Please post your two cents on Herceptin "side effects" real or perceived! [Archive] - Page 2

dbronson1

09-18-2007, 02:53 PM

I am currently receiving Herceptin weekly (for 52 weeks total). I am on my 27th week , as of this Thursday. At about my 24th week, I started getting a severe reaction. Prior to that, I had a mild itchy rash every week that was cleared up by Benadryl. Since then, I developed a severe rash, with hives. I was put on a regimen of Decadron, 5 of them on day one, 4 on day 2, and so on until I reached zero. As soon as I reached zero, I then went into severe chills, cold sweats, diarrhea, vomiting, you name it. It was terrible. That lasted for 3 days. Then, I had an appointment with my oncologist who said I should be on 2 Decadron (4mg each) the night prior to my Herceptin and also the day after. He started me on that last Thursday. Well, as soon as this past weekend arrived, I am back to a rash all over my back, arms, etc. Still getting the chills, sweats occasionally. I am due back to the oncologist after my Herceptin treatment on Thursday. He has mentioned stretching my treatments out to every 3 weeks because of my allergy, but he wanted to wait and see if the Decadron did the trick. While I want my treatment with Herceptin to continue, I also do not want to go around feeling this way. Has anyone else had a problem like this with Herceptin? If so, what did you or your doctor do?
Thanks for any info. you can give me!!

MAB1943

09-20-2007, 10:35 AM

I am on 3 week infusions of herceptin, I have the following side effects
Ears clogged, memory, bones ache, tired, insomnia or restless sleeping,and very slight nausea.

tdonnelly

09-22-2007, 02:02 PM

I have completed 4 cycles of Herceptin to date and the joint/muscle pain is increasingly becoming dibilitating. I took vicodin for two months as Aleve or Advil did not work. I can not stand for more than 10-15 min. and have difficulty walking. Stairs are out of the question. If I sit too long joints become stiff and laying down does not offer much relief. The pain and joint stiffness I am referring to is in my back, pelvic area, back of legs, hands, front and bottom of feet and knees. I am only 47 and walk like I am 80. My bones are already at risk as I have thyroid disease. Since beginning Chemo 8 months ago TSH has not been stable; the last count in August is high. Any suggestions for non-narcotic meds, vitamin or supplement to help me regain strength? I am postponing Radiation as I am afraid it will cause additional problems.
Tamara
______________
Invasive Ductal Carcinoma 10/06
Lumpectomy 11/06 HER2+
A/C-fin. 06/07 4 cycles
Taxol-fin. 09/07 4 cycles
Herceptin- Every 3 weeks-completed 4 cycles to date

tousled1

09-22-2007, 04:21 PM

Tamara,

Try Glucosamine/Chondroitin Complex. It was recommended to me by my neurosurgeon after my back surgery. I find that it helps immensley with the bone/joint pain from Herceptin.

tdonnelly

09-22-2007, 05:46 PM

I too have brown spots on ankles, left wrist (previous vein damage done at time of Muga Scan) and also on thyroid surgical scar all since starting Herceptin. The one on wrist is painful at times. Ankles are also swollen. What does your dr. say to do re brown spots?
Tamara
Invasive Ductal Carcinoma 11/06

Andrea Barnett Budin

09-23-2007, 08:08 AM

Tamara,

When I was on Taxotere (a cousin of Taxol) I had what I call deep muscle pain in my arms and legs. And I am talking about pain! Constant. I could not find a comfortable place for myself. In bed, propping pillows everywhere. In my comfy chair/ottoman. I could barely walk. Shuffled. Kept catching my toes and tripping. Held on to walls or any thing to keep steady. Literally crawled up stairs to my bedroom on all fours. I could not stand for more than 10 minutes. I was forever looking for a chair. It was just necessary. I was that shaky and wobbly. When I caught a glimpse of myself in a mirror, I was horrified! I too looked like a little old lady.

IT WAS FROM THE TAXOTERE -- and the after effects lingered for quite some time. Eventually, after many mnths when it passed, I would occasionally get it back. When I mentioned to my onc, I know this sounds crazy (a yr and two after that chemo) but I still get that same deep muscle pain in my arms and legs, he told me it was not crazy and other patients of his had reported the same thing. I derived comfort it that.

I took pain killers (Roxicet) when on Taxotere as my defense. My onc repeatedly told me I would get no medals for bravery by suffering. MJ kept telling me -- take the pain killers at the first sign of a problem. Don't wait. It takes an hr to kick in. Don't hesitate. His *permission* helped me greatly. I take Omega 3 EPA 800 & DHA 400 twice a day and I take Flexoral at night -- all I believe help this. Oh, also Ativan! It gives major anxiety relief. Helps me be ME. I have learned (the hard way) that emotional and psychological stress expresses itself physically! My back used to be in pain 23/7. Some orthopedists wanted to operate. Degenerating disk disease, narrowing of the spine, L4...L5... But another doc -- WHO CHANGED MY LIFE -- and was a physiatrist (a real doc dealing w/the entire body and mind) helped me see the connection between being stressed out and my pain and after yrs of agony, I became pain free.

Hate to push pills, but they do fulfill a purpose and sometimes we need help. It's okay to need help. Anti-depressants chemically alter our anxiety-ridden minds and bring us relief. They give us back our lives. I was on Zoloft after metast and am now on Effexor. I feel joyful and serene, functioning and more like the true me!

I have been on a supplement regiment since '98, during chemo and now as I take Herceptin ev 3 wks. Herceptin does leave me feeling very fatigued w/somewhat flagging red bld cell counts (which are extremely low for ME and leave me feeling zonked). My cancer center isn't giving Aranesp to boost these to *non chemo* patients. Herceptin is a monoclonal antibody. I CALL IT DISCRIMINATION. BASED ON $$$$$. The injection is billed as $8,000 and Medicare and many insur co's aren't paying. (But that's a whole other discussion.)

Some of the supplements are for ENERGY which is a big issue to be grappled with. I have listed my LIST in a 6/30 thread TO "SUPPLEMENT" OR WAIT. I recall trying to list dosage and the reason for each. If you have more questions, contact me, please.

Tamara, honey, you need to whip yourself into shape as best you can. These are all the tools I used to get myself together and they have had miraculous results. I wish the same for you. Do not despair. Bc is a frightening place to be and chemo, as terrible as it can be, is the best weapon we have to annihilate those cancer cells. So, try to see this horrid phase as just that -- a part of a process -- taking you to wellness! Mentally try to troll throughout the day to find those fear-riddled thoughts, experience them, vent them, talk them out, post, post, post -- we don't mind the whining, it's THERAPEUTIC. We understand. And as soon as you possibly can, in a hr or so -- replace those awful thoughts and images with thoughts of you being victorious. Seeing yourself far into the future in vivid detail. Crossing the finish line with your arms raised in triumph. Much to do, but so very worth it...

Sending you big hugs and much loving, healing energy. I feel your pain. I have lived it. And I have survived. So will you, Tamara. So will you.http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/celeb-boxer
Andi

BonnieR

09-23-2007, 08:43 AM

Andi, lots of good suggestions there. Thanks. You were supporting someone else but I needed to hear it too! lol. Especially the part about "no medals for bravery" by trying to slug through without benefit of the meds that are offered to ease the bad times and/or pain...
Just this morning I was telling my husband that I need to remember to take an Ativan prior to chemo next week. Last time I did not (wanted to be "clear" when seeing the onc) and it was stressful when they had trouble finding a vein. And just stressful in general.....

Andrea Barnett Budin

09-23-2007, 10:04 AM

Bonnie, Glad you could reap some benefit from my experience. Before bc I thought I would live to be 100 and never take more than an aspirin. I would look at all the pills older people were taking and wonder what that was all about. When I was a newbie, I was all about thinking that I'd do the chemo and soldier through. Bite the bullet.

Then came the nausea! And the pain. And the frequent moments of being overwhelmed. I was facing my own mortality and I thought I could do it on my own. I found talking to those who've been there (and w/a stellar attitude) great to talk my feelings through with. And I found writing to be cathartic. Immensely so. My daughters were helpful, as they were full of love and their own fear and much support, which touched me deeply. They would relate in a general way when facing a major adversity. One extremely logical and compassionate. The other is definitely an old Soul with this spiritual way of perceiving things and a unique, gentle wisdom that stirs people. My husband was great but obviously more scared than I was. I did everything that needing doing that I was too weak to tackle and took me to every doc and test and tx -- standing stalwartly by my side. But his face! I kept asking him, Do you know something I don't know? We'd made a pact that there would be totally open honest communication between us, as had been the case all our *normal* lives together. He is the Duke of Gloom and so cynical and pessimistic, the Yin to my Yang, as I cannot stop being hopeful. It comes from my core.

But I embraced Zofran (the big guns) for the nausea, and Phenergan which worked best for me when I was just generally queasy. Night and day. Sooo much better w/these aids. Then came the sleepless nights. Then I was reading about studies that say those who work the night shift have (I keep forgetting -- is elevated or diminished) T cell counts, indicating a compromised immune system. People who do not sleep at night heal more slowly. So I set about to ask for sleeping aids (Ambien, whatever) and make it MY DUTY to get a good night's sleep every night. Lord knows I feel beyond lousy and non-functioning the day after I've been strolling through the house till 3:, 4: or 5: AM. Who wouldn't?

And I am eternally grateful for my Dr. MJ, or just plain MJ, as he calls himself when he calls. This is MJ. I just love that man! He is brilliant, kind, thoughtful, caring, cutting edge aggressive yet totally compassionate. He hears every word you say, and intimate, and responds immediately. He returns calls the same day, no matter what. He travels the country, and the world, attending, or giving, lectures and specializes in bc and lung. He can remember every detail of my med history to this day without looking at my chart (as far back as '95) and he is busy w/a horde of other patients. He has called me from airports to just check in and see how I'm doing! And when I failed to call back (the # I wrote down led me to some Chinese restaurant) -- he called the next day! You didn't call me back. I explained. He laughed. I had the right #; it was some fluke. But, the point is, he followed up. So when MJ says, You know they give medals out for bravery in this, I heard him. And I have found that advice to be irreplaceable.

I, like many, felt I'd become addicted or something. On the contrary, I take what I need and need what I take and I am functioning without pain or despair. I am the true me and for a while there I couldn't be, I was so inundated with feelings of I don't think I can do this and grave uncertainty, believing I was walking hand in hand w/death. With med help, I have the strength to work through those feelings (talking and writing) and then discarding them. Then, when I am free to connect with my Spirit, this magical power infuses me with what I call pure, unconditional Universal Love. Life becomes more beautiful than ever before and ATTAINABLE, within my reach. I can feel the sacredness of each day and I rejoice over each. I am filled w/joy and the serenity comes with the faith in my heart that I am empowered to help heal my body, command my body to do a better job. And all of us have this power! We have only to claim. It was given to us a our birthright, as we were born into this world. And we are meant to evolve to come to understand and utilize what scientists say is the UNUSED 95% OF OUR BRAINS. Surely we were meant to grow and become all we can.

Forgive my usual rambling. I just always seem to have to much more I want to say. Wanting to empower every one of us! With much loving energy...
Andi

MaryLou

09-23-2007, 11:17 AM

I finished my 52 weeks of Herceptin on 9/20/07, and wonder how long it will take for my body to return to "normal". Dx with invasive ductal carcenoma 5/1/06. Lumpectomy on left breast (1cm tumor), tissue margins and 3 lymph nodes were clear. Doctors said I would only need radiation until they saw the pathology reports. ER-, PR-, HER2 +++. Had 4 rounds of A/C (beg 6/29/06), was to have 12 Taxol along with the Herceptin, but had allergic reaction to the Taxol so had the Herceptin alone - 52 weekly treatments - during that time had 35 radiaiton treatments. Side effects including - joint and muscle pain (hands and lower back especially), brittle nails, memory loss and unable to express thoughts, trouble sleeping, weight gain, vision problems, runny nose, extreme fatigue. I lost all my hair 14 days after the first A/C treatment, but it started growing back within 3 months after finishing the A/C, while on Herceptin. it is growing quite fast and is extemely curly (Praise God). I have followed this group throughout my treatments, but have not posted until now. It has been a blessing to be able to look up different effects and see that I was not alone, Thank you all.

Mary Lou

gin-tx

09-23-2007, 05:31 PM

Side effects of Herceptin.

I too am on Herceptin and have joint pain but have not had the other drugs that you have mentioned you were being given. How does your thyroid problems affect your joints and bone pain. My onc sent me to a pain mgt dr who was not sure he could help me, he had my records from onc and my health history. He gave me an Rx for a pain patch and it has helped tremendously. I cut them in half, original pain was mid back, so I would use a half patch, it can only be used for 12 hours on, 12 off. I got relief and the pain got better, which the dr was quite pleased. Then I began having pain in the lower back just below waistline. I would use a whole patch which I did several days last week, got relief. I don't know if this is something to be used over long term but you might ask your dr about them. Every situation is different. I am much older than you are and have some leg pain, my biggest difficulty in walking is in a shopping center or grocery store, the floors are concrete and I don't last long so I don't get much done. Keep me informed of your progress. And if you are going to be doing radiation will you begin soon? I had a tumor on my spine that was detected right after bc diagnosis and it had to be dealt with (had 18 radiation treatments to shrink the tumor from pressing on my spine) so I missed doing any radiation. By the way I had BC in 1995, no chemo, only radiation at that time which was pretty standard treatment.

hugs,

ginkott1@aol.com

tousled1

09-24-2007, 07:20 AM

Mary Lou,

Sounds like you managed to get through your treatment without too many side effects. As to when you will begin to feel normal again -- big question! Everyone is different and responds and bounces back differently. The hair, eyebrows, eyelashes, etc will grow back and about at the 4 month mark you should have a decent head of hair. A few months after you finish Herceptin you should start to notice improvement with bone/joint pain, running nose, etc. Just take things one day at a day and enjoy each and every day. You may find that you tire easily and this is quite natural. It takes your body a long time to get over all the effects of chemo. Good luck to you

Kathy S in Tokyo

09-26-2007, 08:57 AM

I've noticed light vaginal bleeding for two days after each Herceptin/Taxol treatment. I get Herceptin weekly and anti-nausea, steroids and Taxol three weeks out of four. For the past 6 Herceptin/Taxol weeks I've noticed light vaginal bleeding and a little discomfort (like the beginning of a UTI) for a few days, sometimes beginning while I'm having the IV. It always fades away by the wnd of the third day and my onc. doesn't seem concerned about it.

We'd talked about a total of 12 combo treatments before reverting to Herceptin alone (hi ho the dairy oh, Herceptin stands alone) but now he feels that as the treatment is so effective in shrinking my lung mets and I've been tolerating it so well, I should stay on the boat for up to 20 treatments before setting the Herceptin cruise control and going into maintenance mode. Yesterday was treatment 12, so I'm not done yet after all but am kicking some major butt while I can.

Has anyone else had this kind of spotting?

tousled1

09-26-2007, 10:01 AM

Kathy,

I'm so encouraged to read that the Taxol/Herceptin is shrinking your lung mets. I have a personal interest as I too have lung mets and am on Taxol. I'm getting Cqrboplatin with the Taxol though. I noticed that with my first 3 treatments of Taxol that I had a burning sensation uopn urination for about 3 days after treatment. Told onc about it and she did a urine test -- everything was fine. I don't have the problem any more.

Andrea Barnett Budin

09-26-2007, 02:06 PM

Tomara, I have some brown spots on my calves. Docs don't why, suggest because I take 81 mg aspirin a day??????? They have faded over the yrs. No pain involved. Swollen ankles. And feet. A family trait, but... I am on hydrochlorthiazide (for water retention). Do not add salt to anything. Watch salt. Yet...

ANDI

AnneRM

09-26-2007, 03:06 PM

Hi Everyone,

I didn't know about this site until I put a posting on BCANS looking for someone on Herceptin. I was having alot of side effects and I wasn't sure if this was normal. Return posting suggested this site. (thanks Alaskangel this site is great)

My name is Anne and I had a right mastectomy Dec15/06 at the age of 46. Started my first of 6 rounds of chemo on Jan 30/07. At 3 weeks apart my first 3 rounds of chemo were 5-Fluorouracil, Epirubicin and cyclophosphamide. The last 3 rounds were docetaxel, which was the worse because it left a rotten taste of copper (something like that) in my mouth for 10 -14 days. Started menapause in Feb. and I wasn't ready for all the fun stuff that goes with it.

I started the first of 17 treatments of Herceptin in June. Five down 12 to go.

Here are some of my side effects:

earaches
headaches
sore throat
gas (reflux)
shortness of breath at times
hard to swallow when lying down
swelling in hads
rib pain only on the right side
back pain
sore teeth
sinus
vision problems
no energy I seem to be going backwards with this. The doctor told me that my energy level would improve after a couple months after chemo, but it's getting worse.
mood swings - I blame this on menopause
very, very sore legs

It's great not to feel so alone with these side effects. Love this site.

Hope this will help
Anne

ps. I am open to any feedback on this

Kathy S in Tokyo

09-26-2007, 04:17 PM

Thanks Kate, the burning sensation is what makes me think it isn't a cervical problem and the repeatedness after every Taxol day makes me think it is definitely chemo oriented. It may be mucous membranes acting up, like the insides of my nose (I get a pink tinge when I blow my nose during the same 2 or 3 post Taxol days). I continue drinking lots of water and will ask again next Tuesday when I go for my Herceptin only (yay a Taxol break!). The shorter IV time gives me time for another cardiac ultrasound to test ejection factor too. I expect it will be fine as I feel pretty good in general.

Paris

09-26-2007, 05:27 PM

Has anyone experienced fatigue that they think is from Herceptin? I've been on it since May and I have these really bad fatigue spells. I'll be fine for a week then crash. It's like I can't get my body back in the shape it was before bc. I exercise, eat right, my scans are clean and bloodwork good. Had thyroid and vitamin d tested and all fine. I'm thinking either it's herceptin or maybe adrenal fatigue from all the stress of diagnosis and treatment. My initial chemo was 4 rounds taxotere and cytoxan, finished in April, and I did okay on it. It's driving me crazy trying to figure it out!

Jamie

Andrea Barnett Budin

09-26-2007, 05:53 PM

The lingering effects of chemo can last up to a yr or more. The stress from the dx and tx impacts us often after the dust settles. What you are experiencing is *normal* for what you have been through, Jamie. I've been on Herceptin since '98 and fatigue is a reality for me. You can read my experience below. I have good days, and bad. I have good hrs and bad. I have peaks that last for a while, and I get suckered into thinking, I'm sailing smooth finally and then, I fall into a valley for a while. It's the new normal. But each day is a divine gift and I appreciate and revel in each one. I do my best every day. And every day, your best changes. I accept this as my new truth and I work with it, as best I can. Be good to yourself. Be patient with yourself. Sounds like you're doing everything right.

If you can, try to post your signature w/details. It helps for all of us to understand exactly where you are in the scheme of things. It doesn't matter what stage you are -- you are a Sister, welcome and accepted and supported here...
With love, Andi

tdonnelly

09-26-2007, 07:08 PM

Andi,
Thank you so much for taking the time to help me understand what I am going through. What an inspiration you are! I'm posting your comments on my refrigerator as my daily reminder to Live Strong. I took your advise and called the onc. for a refill on my pain meds. I too am afraid of becoming too reliant on them, but know for now they are necessary to help me work and do all that I need to do daily. I see him Monday and hope to have a bone scan soon and figure out what's the best way to handle this neuropathy. I have never been one for vitamins/supplements but now realize their importance. I met a new coworker and soon discovered she had bc in 1992, she only had surgery, no chemo., no radiation while at Micheal Reese hospital and has been cancer free ever since. I am overwhelmed by how much is truly involved with bc. The surgery, chemo, radiation, meds and numerous side effects. This disease just goes on and on, which is what makes it so scary for me. Especially taking Herceptin when no one really can tells us about long term effects and how it can effect our heart/lungs. Thanks again for your kind words. Have a great day.
Tamara

MAB1943

09-27-2007, 03:34 PM

Anyone out there on herceptin that has neuropathy of the feet and fingers from chemo?

Paris

09-27-2007, 05:50 PM

Hi Andi, Thanks for your kind reply. You are inspiring! If it is the herceptin that's making me tired then okay I'll deal with it. I definitely appreciate life alot more these days even with the fatigue! I grew up on Long Island. Where did you live?

MAB I didn't have any neuropathy. The fatigue has always been my problem. Otherwise chemo wasn't too bad.

Jamie

BonnieR

09-27-2007, 05:54 PM

MAB, I have neuropathy from something I'm taking (THC). It is intermittent. Worse right after the infusion. I take 10 Gm three times a day of Glutamine. You mix the powder with juice or what have you.....
Seems to help.

Andrea Barnett Budin

09-28-2007, 02:08 PM

Jamie, Any questions you have shoot them over to me, as the poster child for Vit H, I have accumulated a lot of knowledge, hanging out in chemo rooms for the last 12 yrs.

I grew up in Rockville Centre. Got married, lived in Manhattan (22nd & 2nd), then an apartment in Lynbook, till we could afford (or stretch to afford a house). Had to go way out to Dix Hills to achieve that. Lived there 29 yrs raising my babes and my Silky Terriers. Now have 2 Maltese bros that we rescued 4 yrs ago.

Moved to Manhasset as I was initially dx in '95. That was interesting. Then moved full time to our part time town Boca. Moved from NY and from southern Boca large apartment to northern Boca house -- so I could take all my *stuff*. That move was just after finishing 9 mnths of Taxotere. That was impossible. It's amazing what you can do when you have to. And here I be. Or, as Flori, morning glory, says -- HERE AM I!

With loving energy going out to my Sisters and Bros... Andi :)

myraazzopardi

09-29-2007, 08:52 AM

Hello girls. Changed hospital and have a really unsympathetic onc here Spain.
I sort of stated that prognosis for Her2 positive was not good. His answer yes that’s why we are giving you herceptin. I then asked what when the herceptin treatment is finishes. His answer “ Would have been better if you were node positive as we would have given you a tablet for five years” Anyone know what tablet and after all is it true that I am worse of being node negative. Second question. Does anyone else have discomfort with the operated breast? It’s now nearly a year and a half and I am sometimes still supporting my breast with my hands. My nipple area very sore to the touch and I am still wearing a constraint on my car seat belt so that it does not touch my breast at all.
Hate being a cry baby but hope someone can answer my questions. Love and hugs to all my hamster sisters.

tousled1

09-29-2007, 09:17 AM

The tablet or pill he was talking about was Tamoxifan which has nothing at all to do with node negative or positive. It has to do with whether you are estrogen/progesterone postive. I think you need to get a copy of your pathology report.

myraazzopardi

10-01-2007, 06:44 AM

Hello Tousled. Thank you for replying. My report is in Spanish and though I speak the language not I think for some medical terms. I am her2 positive I CDI (carcinoma ductual filtranete. 1.5cm. with 10% intraductal Grade 3 with what seems to be hormonal receptors negative B2 3+ Oh dear I really need to see if I can get this all English. All my best wishes. Myra.

BonnieR

10-06-2007, 09:35 AM

yes, it sounds like he was referring to "hormone" positive, not node. I know you said you speak Spanish but are you and the onc speaking the same language? I mean that in a couple of ways really. Sometimes I dont feel that my doc and I are speaking the same English! I dont always understand what she has told me. That is why I am sure to write my questions and her answers to be able to review them later. And ask for clarification. My husband has been with me during appts and he will hear things very differently than I did. And he is usually right. Anxiety can cloud our comprehension.
And get that report translated into English. Or at least have it explained to you...
Keep the faith,
Bonnie

myraazzopardi

10-07-2007, 02:26 AM

Hello Bonnie. Than you for replying to my question especially as you are so recently diagnosed and we all know what we go through in the first few months. You are totally correct about the language. I will check out my pathology report. I wish you, your dear husband and all you family all the love and care in the world. Myra.

kat in the delta

10-07-2007, 08:09 PM

I have always heard of finding the" NEW ME" after treatments and have discovered that the NEW ME IS really the "OLDer ME"-with all these damages from the chemos, rads,possibly surgery, and HERCEPTIN, too.
I am Still in PAIN..., and the ONCS will not believe me until they SEE a Recurrence.. I wish I could give them some Adrimy/Cytox, then 12 doses of Taxol or enough so they couldn't feel their fingers or toes, then add some rads. during the same time, and finally top it off with that Final Year of "Herceptin " . None of the ONS (I HAVE BEEN TO) will talk about the long-lasting side effects of all these combined treatments . Then, it is too late.--- a year, then another year or so may pass by and you still feel like s- - t !!!--still in PAIN and maybe some neuropathy--even neuropathy never considered as such--like not being able to let go of Things in your left or right hand....probably more...+ if you have had surgery adn the removal of 1 or 2 breasts--and the Emotional IMPACT IT CAN HAVE ON A WOMAN !!
Yeah, they can rid you of the cancer and some are PROUD as roosters(if a man Onc.) , but WHAT nobody tells you is that all of these chemos., rads, and surgery-....Can and wWILL usually cause a lot more Devestion to your body, than the Cancer itself !!
But WHO WILL TELL YOU THIS WHEN YOU BEGIN ?? Not the Oncs, they need some $$$$$ and then they tell you when all has been done and there is no evidence of disease :
that you do NOT have Cancer ..anymore..!! Voila --get in the kitchen and start cleaning(family thinks). The ONCS are so Proud of the fact that , if you are so lucky, THEY HAVE GOTTEN RID of your cancer..-for the time being at least--..and now YOU ,"ALONE" , can now try to COPE with any and all thePAIN and Forgetfulness and Neuropathy, and any HEART DAMAGE-causing poor circulation and swelling in your feet and ankles,etc..and causing poor circulation if you see those Brown spots on your ankles,too.
ONCS, seem to fail in informing you about all of THIS when YOU 1st begin your first and 2nd yr of treatment.

Have any of you had Oncs that DID talk about this at first or at all ?? I'd like to know.
RSVP ----- kat in the delta

Kathy S in Tokyo

10-08-2007, 05:42 AM

Hi Kat,

My newest oncologist always discusses the treatments and lets me know how awful things could be so I can decide which is worse, the cancer of the the degeneration due to the drugs. We carefully watch and decide when to kick in with the heavy artillery (20 Taxol treatments now because I needed to shrink the cancer in my lungs enough to breath a little last June) and when to wait and watch the cancer which will never go away while maintaining the absence of its growth with weekly Herceptin forever or until my heart protests even slightly. He warned that the first Herceptin treatment might cause a severe reaction, even death, and that if I coughed even a little during the first I.V. I'd have to stay at the hospital overnight or for a few days. I had to mentally confirm the status of my underwear before signing the release for that treatment, just in case I ended up in the emergency room. He asks at every visit about neuropathy (here the big deal is not being able to keep one's slippers on dur to numb toes, so culturally oriented to Japan!). I suppose I'd feel differently if I knew I'd ever be NED, but it seems that the expectations for stage IV are that I can probably have a nice long life by living with cancer and striving for "stable." I appreciate the onc.'s concern for balancing treatments with quality of life at this point. It sure would be nice to have a day or two when I forget to even think about cancer though.

Connie Jean

10-08-2007, 10:13 AM

I was on herceptin for almost 2 years, every 3 weeks. I began taking it with Gemzar and Taxotere right after my mastectomy. I gained 10 lbs as my appetite increased. I deveoped a mass in sinus area (not cancerous) which gives me problems several times a year and I have off and on positional vertigo. My nails are soft and thin and my hair which used to be thick and bushy is thin and straight.
But I love herceptin for keeping me NED and these side effects were very tolerable.
I am now on Tykerb (2 months) and still NED. Praise God! Life is good.
Connie

harrie

10-08-2007, 11:22 AM

Hello Kat S in Tokyo,
Before herceptin I was getting a little leary because I was reading about all the side effects many were getting. So I opened up a thread asking who was out there that have been on herceptin and got little if any side effects and many responded that they did in fact got minimal effects. I have been on herception since Feb this yr and so far (knock on wood) I have not noticed any side effects. Also, during treatments, from day one, I have been able to wear any type of shoe that I wanted. Neuopathy has never been an issue with me.
Good luck, hope all goes as well with you as is with me.
Maryanne

kat in the delta

10-08-2007, 01:16 PM

I got neuropathy from the taxanes..I took Taxol..some take taxatere...(sorry about the spelling--in a hurry)..
The new thing is just going for a
Targeted treatment that fits You..!!!!!.. Now, some people are not getting the old adriamycin and cytoxin... nor Taxol or Taxatere... Only the herceptin... or the Tykerb.
The smaller number and duration of chemo. drugs, etc... you get seems to be associated with the # of side affects one gets from their treatments. Less chemos and duration of them = less side affects you wind up with.... --This is my personal opinion.....
I got it all !!!! After finishing all + surgery at first and rads,too, I was in Bad Shape-- but it has shown up WORSE after I had finished all for a year!!! .OOoo.and I forgot the Zometa ..the Onc gave me every 2 mos. for Osteopenia..which I stopped...after hearing the
Teleconf. on Bone Health from Cancercare or lbbc.org or y-me.org--think it was from cancercare.org... Listen to some of the past and future teleconferences that the MD Anderson and other Professionals. It is excellant for bone METs...but for what I have..only 1-2x per yr is recommended....
. --I have LEARNED a lot from some of the TEleconferences......... Keep in touch.
Hey and I have talked to gals in Stage 4 who are going on vacations to Fla, etc and who have had S.4 for 10 yrs+++ ...............kat int he delta.

dhealey

10-08-2007, 04:36 PM

kat in dthe delta, I have a woman oncologist by my choice. I am Stage IIA, she told me right up front that my breast cancer would most likely come back at sometime and I would never be "cured", since I was her2pos. Says we have to treat it like a chronic disease. She has always been up front about the side effects. Is particularly watchful of my heart as I was on adramycin/cytoxin first and now herceptin. I have gotten alot of joint pain from the arimidex which is bad for me as I am very active. Walk alot. We have changed this to aromasin but the joint pain is back. I have a hard time defining the new me, but it is a work in progress. I have never felt embarrassed because I have mastctomy scars and I don't feel any less attractive, after all we have the right to chose whether or not we want a particular treatment. For now I chose to live each and every day.

misskuwait

10-09-2007, 12:12 AM

Thanks for posting the article on the board. I really agree that the drug companies do not follow up after the drug has been marketed. My onc never asks searching questions its as if they dont want to know the side effects.
I am thankful of course for the Herceptin but my main side effect has been total back pain since one third of the way through the yearly course. I still have it pretty bad and no one can tell me if it is due to the herceptin or a combination of it and Tomaxifen. I often wonder will I have it now for the rest of my life?
Its great we have this board to post our thoughts on. Is there anyone out there with a similar story to tell?

sandy truett

10-09-2007, 08:40 AM

stage 2+, her2neu+, 2nodes+, radical mastectomy, AC/taxol Herceptin 5/05-5/06 weekly. I actually felt well during treatment. I do have more floaters in my right eye but that occured after my first AC. I did get bad upper teeth pain in the 11th month of Herceptin. Went to my dentist who couldn't find anything wrong and then to my doctor who sceduled a scan thinking maybe sinus but couldn't find anything wrong either. Teeth pain went away one month after stopping Herceptin.

Paris

10-10-2007, 07:10 AM

Hi DHealey-I'm curious why your onc. said you'd never be cured since you were HER2+. While I know in reality breast cancer can't be completely cured why was the HER2 such a negative? On the one hand HER2 has more aggressive characteristics but you hear people referring to herceptin as the "magic bullet". I am er/pr- and I've actually had people tell me that I should feel happy I don't have to do hormone therapy or worry about my ovaries.

Jamie

Brenda_D

10-10-2007, 08:27 AM

And my Onc said "we are going for the cure", even though I have been staged at IV and the original pet scan showed bone mets. Later bone scan says NED, so that leaves me confused as to whether they were really there or not.

But, I think it depends on how your Onc views treatment and how your mental outlook can affect your overall health.
My Onc said 10 yrs ago, I wouldn't have had much of a chance, but now we have Herceptin and later Tykerb.

dhealey

10-10-2007, 03:03 PM

Paris, I think my onc says I will never be cured and will have to treat this as a chronic disease for several reasons. I have tested positive for the gene, my tumor was large and grew in a short period of time. Not there in July discovered large lump in Oct., when you are herceptin positive the breast cancer is aggressive. Herceptin in some women can stop working at some point. I am Er/Pr positive and have tried two different hormone therapies both of which have caused me some side effects, only one more to try. It is not that she is giving me a death sentence, just bein up front that it will return at some point and we treat it again and again. I rather like the fact that she is up front about this. My mother's bc was same as mine only she was 58 when she was diagnosised (I was 52) she lasted 8 years, 5 years with no recurrence, then it came back with a vengence. I have done a lot of research on this and there really is no cure. They can keep us in remission for a long time though, and keep treating it with more effective drugs, but like diabetes it is a chronic disease. Many women who are stage IV go in and out of remission and can live for a long time if recurrence is caught early enough. I hope this answered your question

gin-tx

10-10-2007, 03:39 PM

I do have some pain in back, worse sometimes than others, but I don't have the extreme side effects that you seem to be getting from treatment. Wish I had a suggestion, I did use pain patches given to me by a pain mgt dr which helped tremendously. I have more left to use when I need them. Don't have a lot of pain in feet, some, none in hands. Just keep asking what they can do for you.

ginkott1@aol.com

tfouts

10-12-2007, 08:46 PM

Everything you state as your symptoms are what I am experiencing! My doctor keeps telling me that Herceptin really shouldn't cause these problems. But I'm telling ya, I'm not going crazy! I'm 43, and I feel really old! I only have two more treatments and am hoping that these symptoms will get better. I do want to add one more symptom though: I still have extreme vaginal dryness which has continued after my four AC and 4 Taxol treatments. My doctor said he hopes that will get better after I have completed my Herceptin treatments. My husband really hopes so. I haven't seen anybody address this issue here yet. Has anybody else experienced this too?

Kathy S in Tokyo

10-13-2007, 12:37 AM

Hello Maryanne,

I should have been more specific, my neuropathy is from the Taxol and not the Herceptin :-). We added taxol to the weekly treatments (3 weeks on, one week off w/herceptin only) last June to shrink lung mets and I've managed well enough on the first 13 of 20 treatments. I notice how much better I feel on the Herceptin only weeks so I feel that the side effects are from the Taxol and not the Herceptin. The plan is to stay on Herceptin for as long as it continues to work (hopefully years and years). I haven't had any ejection factor decreases so far.

dhealey

10-13-2007, 03:59 AM

I have experienced the vaginal dryness also. Onc tells it is from the chemo and now on aromasin. All of these have interfered with the production of the estrogen which causes the dryness. I have tried the k-y vaginal capsules, these helped some. There is also a product out called replense, works the same way as the k-y. Just another annoying side effect of this disease.

sandy truett

10-13-2007, 08:00 AM

I was on herceptin weekly for one year. I had some upper teeth pain (sinus?) about the 11th month but it disappeared 2 months after finishing the herceptin. No weight gain or any other pains.

Grace

10-13-2007, 09:31 AM

There's an extensive post somewhere on this board that discusses vaginal dryness with lots of good advice. You might try a search. It may have been started by Brenda or Becky, and it's worthwhile reviewing.

rinaina

10-13-2007, 10:04 AM

do you have dryness anywhere else besides your vaginal area? I have extreme dry eyes and dry mouth too. my skin is also dry and never use to be. It does get better after treatment, at least for me it has, but i still have dry eyes and mouth.

rinaina

10-13-2007, 10:05 AM

gin-tx

10-14-2007, 07:33 AM

Dear Kathy,

I don't know why your onc scared you so about side effects of Herceptin. It is one of the best drugs around for treating bc. I've been on it for 15 months with no problems. Just had an Echo and am waiting on results of that. One time when I was in treatment I began to cough, the nurses came running, they had it dripping too fast and that's the reaction, slowed things down and I was fine. Yes there are some side effects, the day after treatment I'm usually wiped out, sometimes two, and I have some back pain but that is another issue with my Stage IV bc. I have no neuropathy and am fortunate in that regard.

Keep in touch and let me know of your progress.

ginkott1@aol.com

Andrea Barnett Budin

10-14-2007, 09:49 AM

Hi, Kathy! As you can read I'm a 9 yr Herceptin honey. My plan is to stay on it forever, or until they come up w/the cure. I am on maintenance. Fatigue, yes. Dryness (which began w/Taxotere in '98) is rampant. Severely dry eyes. Dry nose. Dry skin (I'm Shisidio's best customer for moisutizers and cleansers). It seems gentle exfoliation gets rid of the dull dead cells. My cuticles are dry. My nails are thin, like when I was a little girl, and they peel. My hair is dry. I *used to be* in my former life, before bc -- oily. Skin and hair. Hair is thinner, thank you Taxotere. Oh, and thank you Taxotere for putting me into remission. Guess my multiple tumors got all dried up too.

I get my Vit H (thank you Dr. Dennis Slamon, Dr. Mark Pegram and Genentech's team) in a 1/2 hr infusion. Began at 2 hrs. Moved to 1 1/2 hrs, then to 1 hr, finally am good at 1/2 hr. BUT I have it mixed w/500 ccs saline vs standard protocol of 250. I find I feel less shaky and spacey that way.

All these many yrs after Taxotere I still have residual and rare pains (like deep in muscles of legs) and am a bit cloudy-headed. Maybe that's just the new me. Does chemo totally alter your DNA???

One weird anecdote I'd like to put out there and hope for responses from the panel. You ladies rock! I am a perfume addict. I generally wear Angel. I walk in the street and strangers say, Is that Angel? I love that smell. It's so clean! Waiters ask, Who is it that smells so good? Friends kiss me hello and say, You smell so good. You always smell so good. WELL -- NO MORE! At first I thought the Flea Market sold me a watered down version. I've tried a batch of perfumes. As of October '06 -- my skin no longer retains the scent of any perfume! And I really miss that. And all the nice comments I received DAILY. Every day. DOES ANYONE ELSE HAVE THIS *SIDE EFFECT*??????? What's that all about anyway???

Be well! Feel well.

With hugs,
Andi http://cdn-cf.aol.com/se/smi/0201e05fca/06

Kathy S in Tokyo

10-14-2007, 04:45 PM

Gin-tx and Andi,

Thanks for the comments. When I learned that I could have Herceptin I did the math after seeing Andi's history in her signature and was greatly encouraged. Gin-tx, I'm glad that you don't have neoropathy. Is your back pain from bone mets? I had this year's bone scan last Friday and will get results tomorrow at my pre-treatment visit with my onco. It's a little hard to type with my fingers crossed :-).

Every time anything ever hurts I jump to cancer or drug side effect conclusions when lots of stuff is probably from getting older (the goal of the treatments) and overdoing things (playing softball with the PTA or jumping on a trampoline at a park with the kids). I guess I should act my age a little more or work out more often so it isn't such a shock to the system when I do excercise.

I think my oncologist just wanted to make sure that I was really aware that some patients have reactions the first time as I was fairly laid back at the appointment when he may have expected me to be more tense about starting a new drug. I'd heard from members here and on another site about what to expect and hadn't been sitting at the edge of my seat during the appointment. I had no infusion reaction that day and have been on weekly Herceptin since March now. Dryness wasn't so noticeable in the humid summer months but now that it's cooler and more dry, I broke out the Vaseline intensive care healing skin lotion this week and do notice a big difference when I use it after bathtime.

I'm more fatigued after the lengthy Herceptin and Taxol dual treatment days than I am after the Herceptin only days. Some of the fatigue I have may be from the train commute through Tokyo and back once a week as I tend to stay around home and only go where I can cycle or walk. I'm sure that the weekly Taxol which was added to the treatments in June is a big cause of the fatigue too. I have 7 more treatments to go until I reach the magic number 20 and will return to Herceptin only in my maintenance mode. Some of the lung mets are still there, but most of them have disappeared completely thanks to the Taxol. I'm very glad that I haven't had any signs of ejection fraction decrease and that I can remain on the big H for a long time.

Having a weekly (or more if I can't get various tests scheduled on treatment days) expedition downtown has made this year fly by very fast. It seems like I just had a CT scan and it's already time for another. On the Herceptin, the results showed that the cancer was still there but in check. On the Taxol, the results have shown much shrinkage. Once I'm back on Herceptin only, I'm counting on it to keep the reduced mets in check.

Best,

Lani

10-14-2007, 05:40 PM

your currently being on an antihormonal

Just be aware of the ingredients of Vaseline Intensive care lotion --including methylparaben, lecithin (often from soy) and "soy sterol"

If you are on Faslodex, which causes the Estrogen receptor to fall off all the cells in the body that it gets to (still unclear to me if that includes the brain),
these may not be a problem. If you are trying to minimize Estrogen and similar compounds (phytoestrogens) you might want to check with your oncologist if it might be. The degree to which these compounds get absorbed varies from what I understand.

Brand Information
Brand Name: Vaseline Intensive Care Lotion, Aloe & Naturals
Form: liquid
Product Category: Personal care/use >> Skin Care >> body/hand moisturizer
Customer Service No.: 800-243-5804
Date Entered: 2001-02-23
Related Items: Products with similar usage in this database

Manufacturer
Manufacturer: Chesebrough Ponds USA Co.
Div., Lever Bros. Co.
Address: 33 Benedict Place
City: Greenwich
State: CT
Zip Code: 06830
Telephone Number: 203-661-2000
Fax Number: 203-625-1602
Toll Free Number: 800-243-5804
Date Info Verified: 2007-02-07
Related Items: Products by this manufacturer

Health Effects
Enter text or highlight term...
The following information (Health Effects, Handling/Disposal, and Ingredients) is taken from the product label and/or the Material Safety Data Sheet (MSDS) prepared by the manufacturer. The National Library of Medicine does not evaluate information from the product label or the Material Safety Data Sheet.
Warning from
Product Label: Keep out reach of children. For external use only, Not to be swallowed. Avoid contact with eyes. Discontinue use if signs of irritation of rash appear. If irritation or rash persists, consult a doctor
MSDS Date: MSDS was not available, or issue date was not indicated on the MSDS.

Handling/Disposal
Handling: No information
Disposal: No information

Ingredients from MSDS/Label
Chemical CAS No / Unique ID Percent
Fragrance(s)/perfume(s) 000000-00-1
Glycerin 000056-81-5
Stearic acid 000057-11-4
Methylparaben 000099-76-3
Triethanolamine 000102-71-6
Butylene glycol 000107-88-0
Glycol stearate 000111-60-4
Glyceryl stearate 000123-94-4
Disodium EDTA 000139-33-3
Aluminum magnesium silicate 001327-43-1
FD&C (or D&C) Yellow #5 001934-21-0
FD&C Blue #1 003844-45-9
DMDM hydantoin 006440-58-0
Tocopheryl acetate 007695-91-2
Water 007732-18-5
Lavender oil 008000-28-0
Eucalyptus oil 008000-48-4
Sunflower seed oil/extract 008001-21-6
Lecithin 008002-43-5
Almond oil 008007-69-0
Orange oil 008008-57-9
Sage oil 008022-56-8
Carbomer 009003-01-4
Dimethicone 350 009006-65-9
Titanium dioxide 013463-67-7
Cetyl alcohol 036653-82-4
3-Iodo-2-propynylbutylcarbamate 055406-53-6
Aloe barbadensis/vera extract/gel 085507-69-3
Soy sterol 999999-32-6
Stearamide AMP 999999-34-6

Note: Brand names are trademarks of their respective holders.
Information is extracted from Consumer Product Information Database ©2001-2007 by DeLima Associates. All rights reserved.

Hope this helps you ask and get the best information possible. I don't have the answers.

futurefocus

10-14-2007, 08:54 PM

It may be possible you are allergic to the reconstitution solution that comes with the Herceptin. It is a perservative for the drug not for you! You may want to have it reconstituted with sterile H2O. It helped me and I have and had servere problems -neorp muscular, pain etc. Hope this helps.

futurefocus

10-14-2007, 09:01 PM

Andi,
You are an inspiration to me....I imagine you have gained a great deal of knowledge over the last 12 yrs. I noticed you are "borerline ER & PR"...Did they put you into menopause? My cycles returned after chemo and it scares me. In days past they couldn't determine the specificities of the disease and the chemo or the onc automatically put BC woman into menoopause...Why don't they do this today? ANy help is appreciated.

futurefocus

10-14-2007, 09:10 PM

I wonder if essential oils from which perfume is made would be an alternative? It obsorbs...one can even bath in very small amounts with warm bath water ....I personally like the essentials as they are the purest of pure.

Kathy S in Tokyo

10-14-2007, 10:16 PM

Hi Lani,

You're right, I'm not doing anything about the hormone side of this cancer right now. I had recurrance while on Tamoxifen so I stopped and blasted with CEF then Taxotere last year. The next attempt at hormonally controlling things was Torimifene but my new onc. decided that Zoladex to stop the menstruation that had not been stopped by chemo and daily Tamoxifen should keep the hormone hungry tumors at bay. This was based on both the original cell work and my new onc.'s lab's examination of my tumor cells. We tried this for 3 months during which the tumors in my lungs basically tripled in size and multiplied so I stopped and got ready to start Herceptin.

The Herceptin stopped the growth in its tracks and I was walking around doing well enough in maintenance mode while I had my weekly IVs. When I caught a cold in June though, my onc. decided that the cough was a symptom that could justify blasting away at the tumors to make more room in my lungs for oxygen so Taxol was added. Unlike the previous chemo regime, my periods have stopped with the Taxol.

I will ask my onc. about the Vaseline Intensive care and other Japanese brand lotions and see if he has any brands and products that he can recommend. Thanks for the advice.

Hugs,

MAB1943

10-19-2007, 05:00 PM

was put on herceptin w/taxol and finished taxol in June started herceptin @ 3wk

MAB1943

10-19-2007, 05:05 PM

@3 wk intervals for 90 min infusions.
here are my side effects
muga down to 53% in Sept. they want me to cont w/herceptin thru March 08
runny nose/sinus swelling/nose bleeds.
terrible knee joint and muscle pain also in hands and fingers
terrible taste in mouth
foggy brain focus ability bad memory not too bad but decreased and yes I too
stop in the middle of a sentence and forget what I was saying and can not get the proper word out at times.
neuropathy is worse at times and insomnia after treatment for few days
sluggish and very tired. urinary track irritation. and dryness. hair stopped growing back. hope it will start when I am finished my treatments.
that is all I can think of presently.
Mary

Andrea Barnett Budin

10-19-2007, 06:54 PM

Did I mention that I have recently discovered, on my own, through a friend who was describing why she went off Effexor -- that my terribly spacey, shaky, foggy brain could well be NOT from my low red bld cell counts, but from Effexor! I called my onc immediately and told him I wanted to go off, knowing you need to wean off.

When my friend described her symptoms in detail, I realized that was exactly how I was feeling. I JUST READ THE POSTS SINCE 10/14 ON THIS THREAD AND AM AGHAST. WHERE HAVE I BEEN? It's like that. Whole segments of my life disappear and when I discover them, I am appalled! I kept thinking what is happening to me? Is it 9 yrs of H? Is it my HGB? Never put the Effexor in question, nor did my onc, who has heard my *complaints* for the last 5 mnths.

I was put on E to help my hot flashes. 37 1/2 mg, then 75, then still flashing up a storm, we added an addl 37 1/2 to nail it. Well, after a while I asked to go back to 75 as I was somewhere OUT THERE. I am now remembering... Slowly... So I got put on 37 1/2 for a wk. Felt better in a day. Even better after two. Now after a wk, I'm on 37 1/2 ev other day for a wk, then 37 1/2 ev 3 days for a wk. Getting better and better.

Now I'm reading these posts, and I am floored. May I say how delighted I am to hear I have been an inspiration. News to me. Also, I wanted to chime in here.

I get H ev 3 wks w/a half hr infusion. I get 500 ccs of saline vs the standard protocol of 250 ccs and I believe I do better this way. It was just the way I always got it since '98, then new pharmacist and I saw this little bag and questioned WHY, and he came out and explained. I felt dizzy and disoriented and wobbly after that infusion and now insist, through my onc, that I return to the old method. I know some do the infusion over an hr and feel better. Every one is different. Find YOUR best niche, I say!

Future -- to clarify -- I was borderline in '95 at initial dx. I was put on Tamoxifen after Adria4 and 8 CMF. When the bc recurred in '98 in my liver, I was told I was ER/PR- and to flush the Tamoxifen, it wasn't for me, could have caused the recurrence in my case. I was in peri-menopause for 6 yrs (age 40-46). My last period was '91. I was dx at age 50, post menopausal for 4 yrs.

I'm intrigued by the essential oils post, as I mentioned that for the last yr perfume does not leave any lingering scent on me as it always has. I am wondering about this annoying new thing and what it means.

Mary, I sent you a PM, but returned to the thread and see you were on Taxol, cousin of Taxotere, which I was on for 9 mnths ('98-'99). I had terrible deep muscle PAIN from the Taxotere during tx and long after. It even occurred at intervals yrs after. My onc confirmed that other patients reported the same thing, yrs after. The same was true of the foggy brain and memory thing, but worsened w/Effexor! I had neuropathy on Taxotere but not w/H. Insomnia across the board, no matter what, as friends who never had bc or chemo are experiencing at this age.

I am sluggish, but take supplements for this that help enormously. SEE *GAINING CONTROL OF YOUR LIFE* THREAD for my list and other important details, please! It's 12 yrs of gathered knowledge and experience I feel compelled to share w/all who'll listen.

Dry eyes started w/Taxotere. I'm talking severe! I had to use REFRESH+ saline drops every hr for wks before the eye pain went away (like ground glass was caught in there). Dry nose, use vaseline at night. Slightly drippy, annoying, mostly when I eat, which is inconvenient. A dab of tissue is good. During Taxotere I had to clutch a tissue every waking hr. I had to keep a ziploc in my bag to gather all the soaking wet tissues from constant tearing running down my face that tickled and drove me nuts! Pp kept thinking I was crying. So many were so kind, even the guy behind the counter at the Motor Vehicle Bureau when I moved from NY to Fla. IT'S OKAY. DON'T CRY. He felt terrible. He thought I was having an emotional reaction, like every did.

My eyebrows never grew back after Taxotere but did after Adria and CMF. My lashes hardly grew back. My hairline is pathetic, like a receding hairline. My widow's peak is gone. My thick wavy hair is gone. Replaced w/someone else's thin, bodyless excuse for hair. But it's hair, and I'm not bald, so I won't complain. Much. Still have dry skin. Use moisturizer lack crazy.

Metallic taste w/Taxotere. Not w/H. NO joint pain and no more muscle pain -- usually, which I attribute to my supplements (listed in detail in GAINING CONTROL OF YOUR LIFE) for those interested.

Nose bleeds w/Taxotere. No more w/H. Echo EF at 50 and holding. Supplements listed keep me from plummeting further I believe. Have doubled my PERFUSIA, explained in my list from nutritional oncologist. The fog is lifting going off Effexor. Who'd have thought that was the culprit?

Onc sent me for Brain MRI the other day. ALL IS GOOD, NORMAL, STABLE. That's a big relief. So -- Effexor. And I may decide to continue on 37 1/2, we'll see because it is supposed to contribute to hot flash relief and because I think I need some anti-depressant to feel more like ME, and because it weirdly has stopped my IBS (which I got from Taxotere, and has stayed w/me all these yrs till Effexor). So that's the good news and the bad. And it's really good to be back on the planet again with all your fabulous Warrior Women whom I've grown to love so.
Andi

kat in the delta

10-20-2007, 12:15 AM

I just read in our local newspaper about someone at Duke Univ. doing a study ...and it mentioned also a DR. Slamon or Slaom-spelling is not correct from UCLA..CAlifornia.
Anyway, he said with a genetic test if you had the TOPELL(sp) then Herceptin could or could not help an Her2 + person... Help me look that up... It should be written in the Oct. issue of the Journal of Oncology... How Adrimycin damages the heart..then, if you add Herceptin, you are 5x's more likely to get heart damage.
I am sure that is what is wrong with me. I have never had the genetic test but I feel WE ALL NEED to TAKE it.....or we may be getting too Many chemos ..making the drug companies richer.. Insur. and Medicare(gov) would SAVE a LOT of MONEY if we all had TARGETED TREATMENT(s). My ankles swell ....and look like a diabetics or worse !!! I need to walk more to get my circulation going.. My OLD ONC.. gave me Herceptin when my Left Ventricle Output was just 47.... I just read the INsert of Herceptin..and the WARNINGS--do not give if less than 50 !! On a teleconference earlier I taped the ONC saying that 60 was really Normal....so you know if they say do NOT give HERCEPTIN if less than 50 or if it dropped 15pts score.
My New onc.. gave me a Circulating Tumor Test... and he was looking at my only 3 heart scans I had for ALL my TREATMENTS which lasted almost 2 yrs... Well, at least you don't have CANCER now... with a bit of a grin..as he was walking out..(like/ as if to say in MY words: THAT OTHER ONC.. GAVE you so much..s__t you did not have 1 CTC ..but the guy bout blew up your poor heart..)
the New onc is sending me to a good group of Heart spectialists, and I looked at that CTC test..and for now it said I had 0 circulating tumor cells in my body..... but like someone said ..you never know when it will Flare back out full force......... and I HURT --lack of circulation and some lymphedema in arm and chest..etc.. ??? Hope the Cardiologists can help kat in the delta

kat in the delta

10-20-2007, 12:33 AM

I had a masc. in Apr. of 2005. and I am in PAIN.... my new Onc. said my chest was very tight...,my New Onc also asked me if I had been doing my EXERCISES,,?? ,( no one told me to do Exercise for chest..) Anyway. after going to the cardiologist to check out my Heart..&if it was O.K., he said HE was sending me for some physical therapy....
Remind your Spanish Onc. to test your Heart every 3 months while you are taking HERCEPTIN. You do NOT want it to fall below 50. (LVentricle output or Input "score"). Have you all had a genetic test ??
Anyone hear of the gene Topel or Topell...only 8% of HER2+ have it. I do not know if that is good or bad... rsvp,
kat in the delta

myraazzopardi

10-20-2007, 05:12 AM

Hello Kat. Thank you for responding to my email. I am having the heart tests every three months. I will take note of your advice and see that I do not fall below 50. Reading a book by Eckhart "THE POWER OF NOW" Its not religious. It really helps girls. I also stated a couple of months back that I had no side effects from Herceptin. Well now my 7th treatment and yes knee joints bad sometimes (could have been that I was shopping in Marbella with some lovely high heels and unstead of walking like a cripple as I felt the pain and difficulty I strode proud till i got to the car and kicked them off. Will still put on my heels now and again. No other symptoms that I am noticing. I feel for all of you great girls that are suffering so many side effects. Kat let me have a private email and I will send copy of the book. The Power of Now has a simple immune booster. I use my mind as much as poss. Health to you all we will fight this and show that Her2 wont win. Love ya all.

harrie

10-20-2007, 05:38 PM

For Kat in the delta...regarding the TOPO II and adriamycin. About 20% of br cancer diagnosis are HER2 elevated. Of those, they are either TOPO II positive or negative. If you are lucky enough to be TOPO II negative, then you will not need to receive the Adriamycin regimine. Instead you can go with a taxane such as taxotere which does not have the heart risk that adriamycin has.
I had gone for a second opinion on the chemo issue with Dr. Pegram who works in the same facility as Dr. Salamon. They are both very involved with the HER2 research and herceptin.
Maryanne

kat in the delta

10-22-2007, 10:30 AM

Maryanne or Harrie,
Are you one in the same ...or were 2 people on the Hercptin/Tykerb site ?- just wondering.
In that article, I read that of the people with Her2 Positive BC,only 8 % DID NOT / DID have that Topo II genetic factor. Do you know if More " DO" have the Topel IIgene?? --which means they WOULD have to take the ADRIAMYCIN CHEMOTHERAPY ??
I know Adriamy. can caused 5 times the amount of HEART damage,when followed by HERCEPTIN. If your heart's LVF is less than 50 or drops 15 pts, Herceptin should not be given for FEAR of MORE HEART DAMAGE, which if not fixed , could result in a "QUALITY of LIFE" issue. I just read the Package Insert of HERCEPTIN under: "Warnings".-
I did not know this when I was taking it, and never looked at the package insert until NOW after all my treatments are done. I guess I thought the Onc. knew this. I did ask ?'s and even asked several times for my Onc to give me another heart scan- the last months when I was ON HERCEPTIN, but he said I did not need anymore scans..and I always got the same answer: " ARE YOU worried that your cancer is coming back?" I would always anwer, "Yes." Then, my Onc.'s response was always :
"Don't worry...YOU worry too much !!" . ,
I should have switched immediately, but my husband got MAD if I said one negative remark about this Oncologist. My Oncologist NEVER gave me a heart test at the END of my Herceptin Treatments !!! This Oncologist Never mentioned my Heart at all when I complained of pain and showed him the blotchy brown spots on my swollen ankles.. One of the only 2 nurses walked into the room on this visit which was one of my last 2 appointments. She heard me tell this oncologist about my ankles,pain,etc. She told the Onc. that my ankles and feet were very swollen during my Herceptin treatments to collaborate and agree with what I had just said. She told him, "Remember how her(my) ankles and feet were during her Hercptin treatments?" He never said a word... except "YOU ARE going to be Fine, lady."
I think the ONCs will now give Tykerb as the first-line/BASE treatment. WILL you ask your ONC or his associates about this.?..

They seem to be ALL "EXPERTS" on HER2+ positive =breast cancer.
Are they the Originators of HERCEPTIN ? Who is/ARE the originators.. are they even in the GENETECH(DNA) company ?
Does Anyone ON THIS SITE,-- know ?
If these Oncologists, that you see happen to be the originators of the (traszumab -sp?-or better for me to say"Herceptin"), I think they will still keep giving Herceptin as first line/base treatment after a genetic test and a positive Topol II gene in their Her2+ breast cancer patients.
WHY do ONCS in the USA - "NOT" determine the more precise chemotherapy(s) to use by running aGenetic test on every biopsy, in the " first " place??
It is the ONLY LOGICAL THING to DO, as far as I can see.
Is it because the DRUG companies furnish the Oncs some chemos FREE.., which causes a chain reaction for the oncologists and drug companies- BOTH to make more $$$ --as we suffer ...??
IT cannot be because the Genetic test is THAT Expensive..because in the LONG run...
a genetic test would SAVE INSURANCES and the government a lot of $$$ after 1,2, or maybe more years of trying a person out on which Chemotherapy Drug works on each particular person !! What a WASTE of time, suffering and $$$ if this is true.....
What do you think ?
RSVP --(ANYONE to me)= publicly or PRIVATELY.
Kat in the Delta
katcdale@yahoo.com or this site's private messages.
Thanks------------------------- Kat

theresaw

10-22-2007, 11:00 AM

What are the blotchy brown spots around the ankles? I have them too but I have been off Herceptin for 8months now...I never mentioned the spots to my Onc because I didn't know if they where caused by the herceptin or not...can someone explain this to me...thank you my her2 sisters..

kat in the delta

10-22-2007, 12:22 PM

They are from poor circulation back to your heart...and are iron deposits... probably caused by the herceptin...sometimes you may not notice them until 12 months later.... Do your ankle or feet swell, too ?? Go to a Cardiologist if they do.
kat in the delta

theresaw

10-22-2007, 12:42 PM

Yes they do periodically. I will make do that( go see my cardiologist). I had to stop Herceptin before my year was up because of the damage it was and had done to my heart.

harrie

10-22-2007, 04:36 PM

I am the same: "harrie" and "maryanne". I am sure you can guess what is my fake name!!
Hope this answers your question, but if you are TOPO II positive, adrymicin is what is recommended over the taxols.
I have an echocardiogram every 3 months due to the herceptin. I had it during chemo and am still having it done with the every 3 wk intervals of herceptin. Basically it checks the oxygen output on the heart. That will indicate damage or not. So far my output is fine. I notice many at this site have MUGA instead of the echocardiogram.
Swelling, edema, around the ankles is a real concern. It may indicate a heart concern. I remember once I had that and they did the echo and at least we could rule out heart problems and then the edema diminished shortly after. It did not last long, maybe a wk or less.
I believe it is very important to ck your heart during herceptin and ESP with adriamycin. I think 3 months intervals is probably the standard unless there is a problem.
Maryanne

kat in the delta

10-22-2007, 08:11 PM

Hey person with the brown spots, too...,
AS you can see...I am chemo-brained too. I now think IT is also from poor circulation to the Brain..lack of O2.
Do you mind telling me or asking WHAT THE SCORE OF YOUR MUGA WAS LAST--make sure you get all of your scores..before letting your Onc know.. just ask the secretary or if needed --sign a Medical Release form to yourself. Let me know...
Mine went down to 47...but I never got the TRUE ENDING score as my onc would not scan my heart ...just kept giving me the Herceptin.... Glad to know other oncs give the Muga...or echo of heart like YOU had. I had only 3 scans of my heart altogether ..including B-4 Adriamycin/Cytoxin... what about YOU ..HOW OFTEN OR HOW MANY IN ALL ..echos did you have??? kat in the delta
kat in the delta

gin-tx

10-27-2007, 01:53 PM

Dear Kat,

I am not on tykerb, only Herceptin and Aredia. Therefore I have no brown spots at this time. All I know is my onc nurse called and said my echo was perfect, I do not know the numbers but have had 3 in 18 months. I should have one every 6 mo but the time slipped by and it was 9 mo since my last echo. Sorry I can't supply you more info but I'll try to remember to ask onc when I see him the numbers of my echo. The technician scared me, said something did not look right and wanted to give me an injection to get better readings, I refused. I told her if my onc needed it I would come back, obviously he was happy with results and did not need further testing.

hugs,
ginkott1@aol.com

kat in the delta

10-27-2007, 03:19 PM

I read on the package insert of Herceptin recently
that your Onc should be testing your heart at least every
3 month,,,not 6 months.....or MORE often if you have any
symtoms....short of breath.,pain.etc..ANY Symptoms??
Still when you go to your NEXT APT...ask the Secretary
for copies of all of your Echo's or Muga's or Rested-gaited
Heart scans/tests.... YOU YOURSELF needs to LOOK at the
Numbers...... Only 3 tests in 18 months ?? I'd want to see
them if I were you..and I DID GET MINE>>I WAS SHOCKED !!
I never mentioned it to my Onc after that.... I showed him the
brown spots ..told him about my pain and shortness or breath
and NOT being ABLE to Clean a room..much less the HOUSE !!
-------------you need to look at your scores.........MINE READ
ME A PREVIOUS SCORE OF 50%..when it was really 47, which
is too LOW to be giving ME --full strength doses of HERCEPTIN
and never ending...until the end of 1 and 1/2 YRS, like you..
OH,....your ONC should also TEST your Heart at the END of treatments
as well....and GET THAT NUMBER TOO...or you will feel..as BAD,
or worse than ME !!! NOW, don't say a word to onc..and GET THOSE
TEST NUMBERS...asap !!!! Kat
kat

gin-tx

10-30-2007, 03:24 PM

I have not had the brown spots on my ankles up to now but Herceptin and Aredia are the only 2 drugs I am getting. Yes I get an echo every 6 mo, last one was perfect. As far as other symptoms, it could be from other drugs that you are being given. My onc is so good about discussing anything that is on my mind. I feel so lucky to have such a wonderful dr. Good luck to you and keep in touch to let me know how you are progressing. If your heart problems get worse, go see a cardiologist, don't wait for him to send you.

ginkott1@aol.com

trubev30

12-15-2007, 10:52 PM

I was on herceptin before I got bone mets but 6 mos into treatment I was hospitalized with congestive heart failure & almost died. I was supposed to be 0n it for a year. It was scarier than the chemo I went thru. The 2nd hospital stay was from a toxic reaction to one of the heart meds. I will forever be stuck with the unenviable title of having CHF. So much for that. My fav song now is "staying alive"
Am on the newest cocktail of Xeloda/tykerb. Hopeful.

kat in the delta

12-16-2007, 02:19 AM

Dear ..tube... I have chemobrain..
so I couldn't remember your whole name.. sorry.. but,
How are you doing now? Has your heart recovered? What were your Numbers on the last echo-cardio. you had ?? What was your left Ventricle Output?( not sure of the initials..of the LV...=maybe 3-lettered) but tells you how your heart is functioning... You may have even had a blood test.. that may have detected.. something wrong..like (CHF)let me know....
I agree with Andi that you should get an Echo every 3 mos..but MORE OFTEN if you have problems...like you did.. I think ... some Oncs do not know this and that the Herceptin can be stopped ... or diluted.. for a while.. until your heart builds itself...back up.
I have read recently that , in the long run, the researchers are finding that Herceptin does
more Heart dammage down the road , or (early.).as in your case, ...than they thought..
It may be why I have Chemobrain..
It is Probably the LACK OF OXYGEN to my BRAIN..... from getting the Adriamycin, radiation and then Herceptin..I took 12 weekly.. then 1 every 3 weeks at a strong level for the next whole year.
Now, I cannot even think straight or clean up this house.. I think the MORE of these bad chemos..you get the worse you are.. OR really how these drugs affect each of us personally.
Now, that I have finished the IV's ..(can't remember the date.... but it has been a while now...,
my men(husband& 3 sons), give me these terrible downcasted.. looks of disgust...
I did not choose to be like this.. like THEY think...!!!!!!. I wish I COULD go to work.. but I'd never get there.
It is .so frustrating to be like this !!!
I am unvocused... I am so slow..now. I feel like I am 83..but just 53... I used to go to the gym 5 x's a week....and/or Walk.. I have got to make myself.. somehow get going...little by little.... I think this would help my HEART too.-- better than some unknown 3rd pill as I already take Norvasc..and a diurectic...now...
I do get frustrated..with... ME.. being this way, and with them complaining about what ALL I am NOT doing...
It gets down right oppressive around here.. !!
They want me to be mopping and cooking and cleaning and .. acting like SUPERwoman.. in this messy house. The fact is that ..I can NOT do things as before..,
and NEVER WILL BE THE SAME.!!!

They DO NOT TRY TO UNDERSTAND, and will never understand....
I also think that MDs just give too many RX's...and should give you just one at a time... and look at any other ailments you have had in the past... I have had reynauds syndrome, and I know I do NOT want to be given
a BETA BLOCKER..heart med.
I am NO EXPERT on Heart meds.., though..but read the warning of each heart med. that you are, or were given...
I am so sorry it is in your Bones....
Where and When did the C. appear in your bones.. ???
Hope you are doing better ..heartwise..now. That also scares me more than C., but - you are now the wiser one.. on that..
How are you feeling today ???
I'll keep you in my thoughts and prayers...
R.S.V.P.
Kat in the delta

kat in the delta

12-16-2007, 11:46 PM

I had the basic Adrimy/Cytox..weekly and all the hair came out.. which was not too bad..
Before THAT.. I had a Masectomy.. on my Rt. Breast.. That was in Apr. 05..
Well then the IV's started.. and I thing I tried to be was--TOO brave and Tough-Looking on the OUTSIDE, anyway... went to all but the first ones..of chemo alone..
I was suppose to have 12 Taxols.. weekly ..but that is when HERCEPTIN was first introduced to US who had not HAD CANCER.. before.. I thought it might be a miracle... at first.. and when the ONC asked me if I wanted to try it.. I said .. YES.. not knowing ANYTHING about the DRUG HERCEPTIN.. a mistakes on my part for NEVER even Reading the Package Insert.. I just thought the Onc WAS the Expert... so I went along..adding the Herceptin with my 7th of 12 treatment of Taxol.. Well, Taxol was over after 12 weeks..but the Onc decided to catch ME UP ON THE HERCEPTIN by giving me 6 more Weekly doses of IT before I had the Whole year.. of HERCEPTIN which all were doing... as far as I knew.. I did not know of Heart Problems then... and I did not realize that the patient was suppose to have their Heart scanned with a Muga or Echo.BEFORE ADRIAmy..then again BEFORE HERCEPTIN>>> Then, while on HERCEPTIN>> we are or were suppose to be scanned.at LEAST....every 3 mos..and
IF THEIR HEART WAS - NOT STRONG ENOUGH IN THE FIRST PLACE TO EVEN BE GETTING HERCEPTIN..// Well, WE or YOU should WAIT and Build your HEART UP first.. before getting IT at all..
... Well , I had LOTS OF aches and pains.. all over.. I felt a Nawing aches just about every place on my body.!!. and I I am thin... and my ankles were always ao Tender to touch...still are...and so
SWollen...then... and still swell today....... I was out of breath.. and my mind went to pott......... My husband and sons.. just thougt I was acting.. .... They STILL DO... THEY SAID AS SOON AS I DID NOT GET ANY MORE IV"S..... That I WAS FAKING , and they are Pharmacists , a Comptroller and an ATTORNEY..and the MUSICIAN>> I get little sympathy..... I an OUTNUMBERED ... as you see......
--back to my story....
MY ONC. first noticed some brown patches on my swollen ankles..and I told him it was probably the self-tanner I had used..and it wasn't coming off.... Well IT HAS NEVER COME OFF.. I had already been once to the Dermatologist..- had a basal cell carcinoma removed.. , and when the Brown patches did not go away.. I went back... thinking the worst.... He told me that IT Was MY CIRCULATION
and the my heart was not pumping effeciently..(wise older MD.).
..and the Brown patches were left over deposits of Iron...
The Elderly Dermo.. knew alot.. so he gave me an extra fluid pill to boost the Maxides diurected.. I was already taking.
During Herceptin I had to take the STRONGEST diurectic.. because of my poor little, but SWollen patchy ankles.. My mind was also worse.. as I could not organize a THING..
WE had sold OUR house of many years.. and moved into my husband's parents*deceased then. ... House in the same town.
. & THAT WAS THE WORSE MISTAKE ....--I worked hard with some spanish people laying tile and painting ..etc.. after taking care of of my husbands poor elderly sick parents..and I taught school , too.. Hard to believe what ALL I DID a few yrs back... HISTORY NOW !!
After agreeing to move .. I had MY things,, my IN LAWS old things.. boys back and forth .. from college..... always leaving a trail or host of things... behind dumped in this house... Adding to the NOW PILES UPON PILES >> OF THINGS<< BOxes.. and who knows what.. is WHERE>> ANYMORE>> I have just about given UP..I am TIRED... I did this for so.. LONG>.... I am ready to retire from all major housework.. My husband never turned on a washing machine or even the dishwasher.. and didn't know how.. I know he stilll hasn't turned the dishwasher on... Maybe or Not the Washing machine... he goes to the Cleaners... a lot..........
I went from a 4 bedr;;to a 2 bedr..one... with 3 sons....
..and 4 dogs...
My husband just told me my cancer has been over.. and to STOP LOOKING at this site..
the truth is I don't get on this.. ..as much as I used to and stopped completely a while back.............
but have found This site to be the BEST PLACE..
Last time.. HE said /// to STOP Typing NOW>>. HE NEVER even sleeps with me.. and will not take me anywhere.. because it takes me NOW.. a lot ...hrs... longer.. to do things.. The computer is in HIS BEDROOM.. I usually sleep on the couch.. but my middle son has finished Law School ... and takes my place.. so the Packed 2nd bedroom is now my hole. I hafta push the ruble to make room for my 100 lbs body... I am 53..and our marriage is on the edge...
LISTEN TO
www. Y-ME.org and go to the Sharering Network Telephone Conference... tomorrow late PM or for me at 7 PM...Central .. It is on REALATIONSHIPS.... , so please remind me or YOU ALL PLEASE LISTEN IF HE STOPS ME FROM DOING SO>>

It would have been better if I HAD DIED... is all I see in HIS EYES>> and he conveys this message of
my DISABILITIES OF THE AFER EFFECT of CHEMO to my sons===--------.all in their 20's---PRAY FOR ME THAT they can see thru HIS CRUDE remarks... gotta go now gang.. THE BOSS RULES THE ROOST>>> I am now a dead person to HIM...an albatross.........
Please e=mail me any helpful advice on my declining mental state and declining MARRIED LIFE.........

I accept any MEN.. or ladies.. advice ,
and register at thewww.Y-Me.org (http://www.Y-Me.org) site.. for the conference on the Tele..for this WED DEC. 19th.. on relationships..
There is also one around lunch time on the ASCO.. findings.. meetins.. around lunchtime.. check at www.cancercare.com (http://www.cancercare.com) or org.. can't remember ..which.. ...

Kat in the depressing Delta

kat in the delta

12-17-2007, 12:15 AM

I had the basic Adrimy/Cytox..weeklyx 4 and all the hair came out..
which was not too bad..
Before THAT.. I had a Masectomy.. on my Rt. Breast.. That was in Apr. 05..
Well then the IV's started.., my WORLD TURNED UPSIDE DOWN.
,but I tried to be SUPERWOMAN- brave and Tough-Looking on the OUTSIDE, anyway... went to all but the first ones..of chemo alone..
I was suppose to have 12 Taxols weekly ..but that is when HERCEPTIN was first introduced to US who had not HAD CANCER.. before..
I thought it was the cure all miracle.DRUG for her2+ bc., so when the ONC asked me if I wanted to try it.. I said .. YES.--. not knowing ANYTHING about theBad Side Effects of the DRUG HERCEPTIN.. a mistakes on my part for NEVER even Reading the Package Insert.. I just thought the Onc WAS the Expert... so I went along..adding the Herceptin with my 7th of 12 treatment WITH Taxol..
Well, Taxol was over after 12 weeks..but the Onc decided to catch ME UP ON THE HERCEPTIN by giving me 6 more Weekly doses of IT before I had the Whole year.. of HERCEPTIN .
I did not know of Heart Problems then... and I did not realize that the patient was suppose to have their Heart scanned with a Muga or Echo.BEFORE ADRIAmy..then again BEFORE HERCEPTIN>>> Then, while on HERCEPTIN>> we are or were suppose to be scanned.at LEAST....every 3 mos..and
IF THEIR HEART WAS - NOT STRONG ENOUGH IN THE FIRST PLACE TO EVEN BE GETTING HERCEPTIN..// Well, WE or YOU should WAIT and Build your HEART UP first.. before getting IT at all..
... Well , I had LOTS OF aches and pains.. all over..
I felt a Nawing aches just about every place on my body.!!. and I I am thin... and my ankles were always ao Tender to touch...still are...and so
SWollen...then... and still swell today....... I was out of breath.. and my mind went to pott......... My husband and sons.. just thougt I was acting.. .... They STILL DO... THEY SAID AS SOON AS I DID NOT GET ANY MORE IV"S..... That I WAS FAKING , and they are Pharmacists , a Comptroller and an ATTORNEY..and the MUSICIAN>> I get little sympathy..... I an OUTNUMBERED ... as you see......
--back to my story....
MY ONC. first noticed some brown patches on my swollen ankles..and I told him it was probably the self-tanner I had used..and it wasn't coming off.... Well IT HAS NEVER COME OFF.. I had already been once to the Dermatologist..- had a basal cell carcinoma removed.. , and when the Brown patches did not go away.. I went back... thinking the worst.... He told me that IT Was MY CIRCULATION
and the my heart was notpumping effeciently..(wise older MD.).said the Brown patches were left over deposits of Iron...
The Elderly Dermo.. knew alot.. so he gave me an extra fluid pill to boost the Maxides diure... I was already taking.
During Herceptin I had to take the STRONGEST diurectic.. because of my poor little, but SWollen patchy ankles.. My mind was just beginning to get worse.. as I could not organize a THING.. No matter HOW HARD I TRIED..... I could only see things here and there coming at me.. like ADD ... or a blend of ADD and alheim....sp? .......
WE had sold OUR house of many years.. and moved into my husband's parents*deceased then. ... House in the same town.
. & THAT WAS THE WORSE MISTAKE ....--I worked hard with some spanish people laying tile and painting ..etc.. after taking care of of my husbands poor elderly sick parents..and I taught school , too.. Hard to believe what ALL I DID a few yrs back...
ALL HISTORY NOW !!
After agreeing to move .. I had MY things,, my IN LAWS old things.. boys back and forth .. from college..... always leaving a trail or host of things... behind dumped in this house... Adding to the NOW PILES UPON PILES >> OF THINGS<< BOxes.. and who knows what.. is WHERE>> ANYMORE>> I have just about given UP..I am TIRED... I did this for so.. LONG just a few yrs back... But now I just cannot get my ACT TOGETHER !! My things are the worst.. as I am constantly reminded.... I am ready to retire from all major housework.. My husband never turned on a washing machine or even the dishwasher. didn't know how....for decades... I don't think he has ever turned the dishwasher on to this vry day.... Maybe or Not the Washing machine... He may have washed his Hunting clothes.. not sure tho.. but he does goes to the Cleaners... a lot..........
I went from a 4 bedr;;to a 2 bedr.HOUSE... with 3 sons....
..and their... 4 dogs...
present time..again he come to me..

My husband just told me my cancer has been over.. and to STOP LOOKING at this site!!
the truth is I don't get on this.. ..as much as I used to and stopped completely a while back.............
but have found This site to be the BEST PLACE..to go for info and HELPFUL ADVICE>......
Last time.. HE said /// STOP Typing NOW>>. HE NEVER even sleeps with me.. and will not take me anywhere.. because it takes me NOW.. a lot ...hrs... longer.. to do things.. The computer is in HIS BEDROOM.. I usually sleep on the couch.. but my middle son has finished Law School ... and takes my place.. so the Packed 2nd bedroom is now my hole. I hafta push the ruble to make room for my 100 lbs body... I am 53..and our marriage is on the edge...
LISTEN TO
www. Y-ME.org and go to the Sharering Network Telephone Conference... tomorrow late PM or for me at 7 PM...Central .. It is on REALATIONSHIPS.... , so please remind me or YOU ALL PLEASE LISTEN IF HE STOPS ME FROM DOING SO>>...and TAKE NOTES ...and send them to ME.....

It would have been better if I HAD DIED... is all I see in HIS EYES>> and he conveys this message of
my DISABILITIES OF THE AFER EFFECT of CHEMO to my sons===--------.all in their 20's---PRAY FOR ME THAT they can see thru HIS CRUDE remarks... gotta go now gang.. THE BOSS RULES THE ROOST>>> I am now a dead person to HIM...an albatross.........
Please e=mail me any helpful advice on my declining mental state and declining MARRIED LIFE.........

I accept any MEN.. or ladies.. advice ,
and register at thewww.Y-Me.org (http://www.Y-Me.org) site.. for the conference on the Tele..for this WED DEC. 19th.. on relationships..
There is also one around lunch time on the ASCO.. findings.. meetins.. around lunchtime.. check at www.cancercare.com (http://www.cancercare.com) or org.. can't remember ..which.. ...

Kat in the depressing Delta

Mgarr

12-17-2007, 08:09 AM

Ooooh Kat, I am so sorry you are dealing with all of this. I am not sure I can offer much advice but please know you are thought of and prayed for daily. The one thing I would offer is find a counselor asap,(your treatment center should be staffed w/ social workers) -- it is time to take care of YOU now!!! Take time for you, take a little walk, go to a yoga class, If possible change your environment for a while maybe spend time away with another family member or good friend.

With Love,

Mary

Catherine

12-17-2007, 09:14 AM

Dx April 2006, Er/Pr-negative and Her2+++, Chemo given first, 4 rounds of adrimyicen and cytoxin. Then 4 rounds of taxol. All tumors and lymphs shrunk to nothing. Then bilateral mast, followed by 33 rads and then one year of Herceptin. Dx at age 58, postmenopausal.

Herceptin side effects:
Bloody nose at first. Dry eyes, crusty nose. Weight gain, rings are too tight. Achey joints and muscles. Difficulty finding words, I speak backwords sometimes. Read a lot, but can not remember what I read. I work part time, and actually do a very good job with my clients. My last Herceptin is in 2 days. Right now my back hurts. When I go to bed at night everything hurts. Mugas every 4 months, all is well. Actually my side effects were light, but they were still there and I think Gentech should know.

Catherine

kat in the delta

12-17-2007, 11:32 AM

Katherine,
Do you still have these poor memory and pain..all side effects? I sure do.. as you can see I agree that Genetech should know. Is this NOT the site ..that reports the after effects of their great drug..(which we really don't know if it helped up or not..) HERE at this thread?
I did not mean to type so MUCH and ... 3 X's.. !!! I can't believe what I did last night... Oh well,,,, afterlife chemo. has not been so good.. as you well can tell ..... RSVP when you can.. here..
Kat in the delta

mabrooks

12-17-2007, 11:40 AM

I have been on Herceptin alone since May 07. I am considering stopping it. My memory has been failing - and my fingertips are sore and cracking and I have tingling in my hands and feet. The nose issues I have been able to deal with. Have had 1 MUGA scan prior to treatment and one about 2months ago - both were okay - but I am getting nervous about what else this drug is doing to my body. I know I was VERY lucky to not have to go through chemo treatments. I just lost my best friend to colon cancer - she had major chemo and Avastin over a year. I feel for all of you that have had to endure the chemotherapy. God belss you all. I do appreciate the input from this site.

MAB1943

12-17-2007, 12:05 PM

Did Anyone Have Paget's ? Is It The Same As Ibc?

Andrea Barnett Budin

12-18-2007, 11:13 AM

Oh my. Kat, dear Sister, please get yourself into therapy. I apologize for being that blunt, but I have a sister, niece and darling friend w/similar psychological issues as you describe. They are in therapy and on special meds. And they need both of these for them to feel better, less depressed, less manic, less crazed. I am praying for you to help yourself b/c it appears that no one, except maybe another Sister on this site, is going to urge you to do what you must do.

I have heard other women say they see YOU SHOULD HAVE DIED in their husband's eyes. Your relationships are caving, leaving you w/o a bed to call your own, w/o an order midst the chaos. Please call today. Sent with loving energy for you,
Andi

Maryanne, Do you have symptoms of Pagets or IBC?

You're a major hero on this site, who has stood up to canser http://cdn-cf.aol.com/se/clip_art/gstres/badday/raspberry with boldness and tenacity. I love your Spirit and have been thinking of you every day, praying you are home and doing better. What's happening? Please share. You can email me if you'd prefer to fly under the radar. LOVE YOU...

harrie

12-18-2007, 10:50 PM

Andi, am I the "maryanne" that you are addressing that question about the pagets or ibc to? If so, I don't know what pagets is or ibc so I can't answer your question. sorry.
I bet you were asking a different Maryanne.....
Happy holidays anyways....
Maryannne (Harrie)

Kathy S in Tokyo

12-19-2007, 12:42 AM

Depletion of savings, divorce...Not having a good week thinking about how to care for 4 kids 14 and under and stay alive by contolling the cancer with Herceptin treatments but hubby says he's paid as much as he can and I should start being considerate of the family budget and that he'd be happy to move out if divorce might make the situation better. Hmmm, quit treatments for the privelege of staying with this gem...I don't think so.

Sigh

Andrea Barnett Budin

12-19-2007, 11:24 AM

HARRIE/MARYANNE. You can tell I'm still on tx. I thought MAB was Madame Dubois who is Maryanne. It is embarrassing. I don't know MAB's name but she asked about Pagets. Dear Lord. Pictures definitely help. I know your face and your name(s) and your posts. HI!

KATHY, My heart feels wrenched by your news. Of course reach for Life! Your beauty of hubby infuriates me, so I can't imagine what his attitude must be doing to you. You deserve to be loved and cherished. Somehow you will find a way not to descend into anger and resentment over your whole situation, I pray. I will pray hard. You are so sweet and I enjoy your posts. 4 kids under 14 is more than enough, w/o the foolish man and w/o the foolish bc issue. You have a great deal on your plate. I know I sound out there, but please try to meditate. It offers great solace, a connectedness to your True Self and your divine Source. Stay grounded, sweet Kathy. Know that you are very much loved and loveable!! Stay close to us...
Andi

Kathy S in Tokyo

12-19-2007, 03:39 PM

Thank you Andi for the comforting words. I'm actually a lot more calm that I thought I'd be about things and am researching options. I'll probably go cycling along a nearby river this morning to "reset" myself. It still looks like fall here in Tokyo.

tousled1

12-20-2007, 06:10 PM

Kathy,

My heart goes out to you. It's a tough battle fighting breast cancer without adding all the other BS into the mix. Four children under the age of 14 - WOW! You have a full plate right now. Hang tough and do what is best in your heart of hearts. I'll keep you in my prayers.

belle

12-21-2007, 12:31 PM

Hi Kathy,

It's just another hurdle to jump through. Everything will be fine. Kate and Andy are right - kids are your happiness. Hang on there and make it through. I'll be wishing it for you, too!

myraazzopardi

12-29-2007, 08:04 AM

I have now been on 3 weekly herceptin for about 10 months. I must be lucky as I am not noticing any side effects still. Unless the cramp like pain I get in certain positions behind my treated breast could be. I get worried when it happens. My onc does not help. I have also a sore nipple which crusts and sometines discharges when crust bathed off. Onc want to give me a biopsy to see but its been like this for 7 months now and not sure if it can be due to radiotherapy which ended a year ago. Thank god for this site.

Johnnag85

01-14-2008, 07:46 PM

I am stage 3 Her 2 Postive 3/Took Herceptin for 8 months out of 12 months scheduled. I took it ix per week, I was 39 yrs old. They said my age was the reason for 1x per wk, had a better response. During that time I was also taking Taxol 1x per wk for the 1st 3 months of Herceptin. I had to stop the Herceptin because it lowered my heart stengthfrom 78% to 45%. I stopped when it fell below 50%. Luckily within 2 wks of stopping my heart rebounded. I dont know what it is today-1 yr later. I also had 4 rounds of AC before the Taxol-every 2 wks. I had radiation treatments after the Taxol was completed-while I was on Herceptin. I also started 25mg of Tamoxifen after Taxol. Along with the Herceptin.
Small side effects which could be related to who knows!! were: Dry nose, nose bleeds, lightheaded, no energy, fatigue, weight gain, kicked into menopause, back aches, numbness in toes and fingers, hands and feet falling asleep constantly, change of vision-different every week for 3 months-eye doctor monitored it, chemo brain, hot flashes, no vocabulary, slurred speech, headaches. Man, is that it? I dont know, seems like most of them.
Today, 2 and 1/2 yrs after dignosis I am on Tamoxifen and I have a dozen spots on both lungs taht have stayed stable with no new growth in the last year. Yea!
Good luck to you all
Johnna

MAB1943

01-16-2008, 02:57 PM

Hi Johanna,
well that about says it all. you hit about every side effect I have.
I wish you good luck and better health ahead in 2008.
Glad your lung spots are unchanged. So i guess it was worth it after all.
At times I wonder,LOL! I will be going off herceptin the end of March.
I am hoping that it worked, but at least I gave it my best.
Keep in touch,
Mary

MAB1943

01-16-2008, 03:01 PM

I think it would be a good idea to have the biopsy. No sense in taking any chances.
Let the biopsy determine if it is f rom the radiation or herceptin. Which I don't believe it is, but the strange things in the treated breast are quite common.
Good luck and let me know the outcome.
Mary

MAB1943

01-16-2008, 03:08 PM

Harrie/kathy I am MAB. I was told by one dr. that paget's is a invasive cancer of the nipple, with crusty red skin and discharge, but I didn't have any of that, but when th ey did the biop of the mastectomy it showed pagets invasive of the nipple.
then another dr said it wasn't cancer and relayed the same crusty,red discharging nipple. ???? Nobody seems to answer with any back up. I can't even find any info on the internet here.?? so, that was why I was asking, not that it matters anymore now. You know I had a biopsy of the nipple before I had the mastectomy and it didn't show the paget's disease, only the DSI, it didn't show that I had invasive cancer either.?? How can th is happen. Mary (MAB1943)

debski

01-18-2008, 08:24 AM

I have been reading your posts with interest. I think I have the following side effects that are caused by herceptin but it's hard to be sure of anything at the moment.

fatigue
runny nose/blocked sinuses
bleeding nose/sore
fatigue
cramps (think this is caused by tamoxifen but not sure)
depression
mood swings (quite violent actually)
want to go to bed all the time
difficulty in concentrating/my driving is shocking
skin on fingers split at ends
nails thinWell I think that's about it- now what am I gonna do about my curly hair? Any ideas.

Love Debbie

MAB1943

01-18-2008, 09:01 AM

Dear Debbie, I wish I had this thread when I went to my onc a few weeks ago.
Her nurses assistant told me none of the same side effects I have been experiencing were from the herceptin.???? Now you confirm what I have felt all these months.
I don't need the RN Assist to dismiss my symptoms because I have you people on this web site who are taking the drug and experiencing the same
things. Thank you so much. About your curly hair, I don't have an answer for that because mine came in gray and straight. Now the gray hair matches my deep creases in my lip and face area and just does wonders for making me feel like an old woman.
LOL!!!! Just what I need to boost my morale.

Hazel Joyce

01-20-2008, 07:08 PM

Silly me. Edited once again to add: occasional nosebleeds, 2 sinus infections (never had either before H.) LVEF dropped to 51% at one point.

Side effects from Herceptin that I am experiencing are vaginal dryness and terrible muscle cramps in my fingers, toes, feet, calves, thighs and rib cage. The cramps seem to occur more frequently at night or in the evening. I don't know if these effects are due to the 3- week dosing schedule or just because I've been on it for a while. I've been using Astroglide for the vaginal dryness.

Edited to add: the muscle cramps are probably caused by something else. I've been off Taxol for 7 months and this started just recently. Who knows...

I'm regaining my health and recovering from chemo which ended in June 2007.

Andrea Barnett Budin

01-20-2008, 07:16 PM

Hi Hazel!

I believe the sever muscle pains you are experiencing may come from the Taxol. I had the same from Taxotere (a cousin) and for many mnths after finishing T, yet continuing on Herceptin. Finally, I no longer have that terrible pain in my arms and legs. The neuropathy in my fingers and toes has gone.

I have been on H for over 9 yrs and have no side effects but for chronic fatigue, flagging red bld cell count. I hope your terrible cramps soon subside...

BE WELL, Hazel... As you can see from my signature, I am very lucky. Somehow, it can always be worse.
Andi http://cdn-cf.aol.com/se/smi/0201e05fca/06

DianaW

01-22-2008, 12:32 PM

I truly feel blessed to have found this website.... I am her2 positive and will be on for life (it will be a year in Feb that I started) I have been off navalbine for 5 months now and I am still fatigued.... my vision has deteriorated, and have bad sinus problems.... I am told that it can't be the herceptin that it doesn't have side-effects!! please write back if you are in similar situation as it confirms I'm not crazy....

My history: I was DCIS 9 years ago, had a full mastectamy, no chemo or radiation was recommended, 18 lymph nodes removed and clean. I was fine until a year ago Christmas I when was admitted to the hospital with fluid around my heart... when they drained it they found cancer cells. They diagnosed me with Stage IV metastatic, her2 positive cancer.

ElaineM

01-24-2008, 03:13 PM

Hi Diana and whoever else is discussing this,
Yes. There can be side effects with Herceptin, but they may or may not be as intense or as interesting to doctors as the side effects of chemotherapy.
I am happy to hear the Herceptin manufacturer may be doing a study on this. In the meantime patients should be able to get a list from the Herceptin website. I think that might be www.herceptin.com (http://www.herceptin.com).
Each person's body is different, so each person taking Herceptin may not be experiencing the same side effects as other people, but as patients speak up more and more the side effects may become more well known and accepted by doctors.
I get tired. Some of my other symptoms doctors have not been able to find a cause for may actually be Herceptin side effects. Who knows? Anything is possible.
Hang in there. Side effects may be unpleasant, but considering the advantages of Herceptin they may be something we have to learn to manage. At least we are alive and kicking. That is a blessing.
peace,
ElaineM

DianaW

01-24-2008, 04:15 PM

Thank you Elaine.... I agree!! God bless, Diana
p.s. it's very,very cold here in Boston so I will dream of being in Hawaii :)

ElaineM

01-29-2008, 03:55 PM

Hi,
I am wondering if rashes and sinus problems are side effects of Herceptin or Navelbine. I can live with rashes or sinus issues if I know the medicine is working well. I am just curious.
ElaineM

dbronson1

01-29-2008, 04:06 PM

I have had a rash since week 22 on Herceptin. I also have a runny nose all the time. I have had other sometimes serious side effects from Herceptin also. I only have 10 weeks to go, and I can't wait to be off it. For the past two weeks straight, even the Decadron does NOT take away the itchy, hivey rash. I am up most nights (and some days) with cold chills, sweats, and diarrhea. I am not on anything else, except the Decadron, so I know it is the Herceptin. All my doctors say oh Herceptin is a piece of cake. I have felt worse on Herceptin than on any of my chemo!!! My onc. says I am one of a very few he has ever seen with these Herceptin problems. I have stayed on it despite all these problems, because all of these side effects are worth it if my cancer never comes back!! It has never affected my heart, my MUGA scans have been great so far. So as long as I can keep a normal weight, my onc. lets me stay on it.

Kathy S in Tokyo

01-29-2008, 04:12 PM

My opinion is that the sinus troubles are from the Herceptin. I started weekly Herceptin last March and had sinus troubles, then added Taxol to the regimen (3 weeks on, 1 week Herceptin only) in June. On came the muscle pains in toes, feet and sometimes legs, mostly when I lay down to sleep. The runny nose got a little worse because of the loss of the hair in my nose from the Taxol LOL. I'd only had a sinus infection ONCE in my life, about ten years ago, before cancer and subsequent treatment.

Hugs,

DianaW

01-29-2008, 04:16 PM

I agree, minor issues I can deal with happily if it is working. I have been off the navelbine since August and my sinus and eye problems haven't gone away, nor has my fatigue. I did not have a rash. My doctors looked for other reasons for my fatigue and I know I've mentioned my sinus problems in passing but was never told it could be from the drugs. They thought my fatigue could be from depression so my celexa was increased... which didn't make a difference in the way I felt (cuz I'm not depressed) so they decreased it again. I'm just happy that what I am feeling is real..... and I can't wait for my next doctors appointment to tell him :) D
Where in Hawaii are you? I went on my honeymoon... it will be 20 years in May...

DianaW

01-29-2008, 04:23 PM

I agree.... I forgot to mention that I spoke to one of the infusion nurses at the hospital today and she did confirm that she has other patients on herceptin only and she's heard of eyesight deterioration, sinus and drippy noses, and fatigue....
I just wish they would have mentioned that these are possible side effects.. they only talk about the heart...other patients must be mentioning these things to their doctors... this is a major Boston hospital I might add....

ElaineM

01-30-2008, 03:12 PM

Hi,
Thank you very much for sharing the information about rashes and sinus issues. I appreciate it very much. I want to continue Herceptin too, because the benefits outweigh the side effects. Hang in there !!
ElaineM

ElaineM

01-30-2008, 03:15 PM

Hi,
I wish the drug company that makes Herceptin would inform the docs. That may never happen, so I guess it is up to us to do it.
Peace,
ElaineM

debski

01-31-2008, 11:26 AM

Funny that because initially I thought that I had no side effects from the herceptin. But now I have only 5 treatments left I feel quite unwell. Joint pains, aching limbs very tired, blocked up nose etc. My chemo nurse said that they were hearing reports of extreme fatigue- made me feel better actually. I have felt unable to work for four weeks now.

ElaineM

01-31-2008, 03:39 PM

Hi, debski (http://her2support.org/vbulletin/member.php?u=2055)

I hope you feel better soon. Fatique can be a side effect of Heceptin. If you want to go to Medline Plus and search for Herceptin or the Herceptin website at http://www.herceptin.com (http://www.herceptin.com) you will find a list of the side effects. Hang in there. Knowledge is power.
Peace,
ElaineM

debski

02-01-2008, 01:49 PM

Thankyou-I will look up that link. The only trouble is that Doctors have a strange way of brushing aside any suggestions that it might make you feel ill.

I am absolutely sure in my mind that I feel like this because of herceptin. I am sure it is a price worth paying.

ElaineM

02-02-2008, 04:01 PM

Hi Debski and everyone else.
I apsolutely agree about doctors not wanting to admit Herceptin has side effects.
Yes. Having a rash is nothing compared to having more cancer and Herceptin is a mirable drug, but doctors should admit it may have side effects. We can live with the side effects if we know the drug is working well. It would also be nice to know what is causing our discomfort though.
Peace,
ElaineM

Jackie07

02-03-2008, 07:53 PM

I guess the heart problem is the biggest side effect.

jaybt

02-03-2008, 09:00 PM

I am Stage 3 Early breast cancer (locally advanced), ER positive, and postmenopausal. I commenced Herceptin with Taxol and will continue to take Herceptin every three weeks for approx 1 year until July this year. I also started taking Arimidex in December 07.

My two cents is that I believe there is a problem with identifying any particular side effect when a number of drugs are being taken concurrently. Its also well established that chemo does damage to our systems.

My adjunctive therapy was dense dose AC and Taxol/in conjunction with 3 weekly Herceptin. However on the second Taxol treatment/first Herceptin my body became toxic and I moved to weekly Taxol and continued with 3 week Herceptin.

The main symptom of being toxic was breathlessness. No previous asthma history and had given up smoking six months earlier. I was allowed back on Herceptin when it was confirmed after tests that no problem existed with my lungs. On the week that I now have Herceptin there is a tightness in my chest and I feel like I am not getting enough air. My heart races a little at times.

On the week I have Herceptin I have a crusty nose and feel fatigued. I feel "a bit quiet" but nothing bothersome. My heart function results are good over the three eco-cardiograms (MUGA's?) that I have had since taking Herceptin.

My body continues to ache quite badly after chemo (finished back in October 07), particularly the legs, ankles - and I numbness in my hands. I also continue to bloat, sweat and sleep badly some nights. However, I believe this is not caused by Herceptin but not helped with Arimidex as they worsened when I started taking this Arimidex. I will put mood swings, nail cracking and swelling of hands and feet to Arimidex, with fuzzy memory and loss of words to chemo.

My tumour markers have dropped considerably and I attribute this to good treatment which includes taking Herceptin. Obviously something has worked for me. I don't wish to contemplate the alternative if Herceptin was not available (and/or freely provided in this country). Like many of us I am just waiting for the next miracle drug to fix the rest up.

kat in the delta

02-07-2008, 01:38 AM

I feel like I am getting confused with the Kathy that has 4 children who are young.. I have 3 sons in their 20's. My husband looks at me with total disgust.. He will not help me do a thing.. I will never be the same
up and running to do all for all...... as I used to be. I can barely do 1 thing at a time after a masc.. rad.. A/C.. taxol... and Herceptin..then a yr of the Herceptin. mixed in with some zometa..
I really feel like my husband is MAD because I DID NOT DIE !!! still have Pain.. brown patches up both legs.. and sores,too ...
Went to a party without him... and wondered .. did the few men..I dances with.. know i did not have a breast........... I miss not having a breast.. I am sad.. help !!!! kat in the delta

miss di

02-07-2008, 07:53 AM

Hello to everyone,

This is my first post, 2nd round with the cancer beast. Was NED 5 years and then wham, stage IV.
Started Herceptin every 3 weeks in Aug 07. Had whole body rash with extreme chills firt treatment. Take benadryl with infusion now. Aslo had nose issues since day one and extreme diarrhea for 1 week and foot cramps. Next few treatments went fairly well, chills, achiness diarrhea again and foot cramps for about a week or so.
By November though, the side effects all stayed the same, but add cold tingling hands an knees, blurring vision and bone aches, all lasted longer 8-10 days. Weight loss.
Dec. felt rotten as all the same above, add headaches first three days after, constant diarrhea and more pain and foggy head. Same in January, all symptoms but now all side effects lasting full two weeks.
Had PET scan and Muga in Jan. Many Many spots have shrunk, and only one spot seen in liver (had 3), nodes in clavilcle and neck can not been seen at this time. Muga good. Tumor markers all normal!!!
So, Herceptin continues to be my best friend, I'm just going to take a break. Onc is giving me Feb off, then starting weekly in March to see if I can handle lower dose better. She did state that these are not normal side effects of Herceptin but anyone can have side effects from anything. I truly believe it is from the Herceptin, I gave her this website to read because of so many saying the same thing. Now I don't feel like a nut.
My best to all,
Diane

May an angel walk beside you.

gin-tx

02-08-2008, 07:33 AM

Dear Kathy,

Am sorry you are having such problems with Herceptin. I have been on for 1 1/2 yrs, don't know how much longer I have for treatment, have not other drugs you were given so far. I had a very aggressive cancer and this is keeping it from coming back but cannot do this forever. I do have more down days after treatment and I think it's because of the length of time. I'm usually pretty wiped out the 2 days after, I just stay in and rest. Can't force myself to do for anyone. I hope you get better, the brown patches on your legs, don't know what that's about, have you seen a dermatologist? Keep in touch and let me know of your progress. And yes I have a lot of aching in back, neck, figure it's the treatment.

ginkott1@aol.com

Kathy S in Tokyo

02-09-2008, 01:33 AM

Hi Kat, I'm the other Kathy (in Tokyo with 4 kids) but I think we might have the same husband or maybe "soul twins". Some guys are just clueless! I'm sorry that you're having such a hard time. Are you still on the Zometa? The list of side effects for that drug is fairly daunting and after dealing with diagnosis and all the other cancer treatments and also the Zometa it is no wonder you're not feeling so hot.

I'm glad that you managed to get out to a party and dance and hope that next time you won't worry so much about whether your dance partners knew that you were missing a breast. I hope that most guys out having fun are not really so worried about the package the fun comes in but the company itself and that you will eventually be able to relax about body image. Dancing ought to be good for your circulation at any rate.

Hopefully a dermatologist can help out with the brown skin patches and sores.

Big hugs,

BethC

03-17-2008, 04:34 PM

I have been taking Herceptin every 3 weeks since October 1, 2007. For the first 18 weeks, I also had Taxotere and Carboplatin. Approximately 14 days after the infusion, I start breaking out with acne and a rash on my face, chest and upper back. I continue with the breakouts for about a week.

mabrooks

03-17-2008, 04:56 PM

I only have three more Herceptin IV's. I have been lucky enough to not have to have any chemo. My only issues with the Herceptin - is that I have no more eyelashes, my nails and finger tips are a mess - and splitting and cracking and painful - and my nasal pasages are a mess. I will be glad to be done with this drug and I just hope that down the raod they don't inform us that it has harmed us in anyway. I finally weaned off Effexor - that was a nightmare. It helped with hot flashes - but the withdrawal was awful. If you are considering it please google "effexor withdrawal' before you start. MD's are not aware of how terrible it can be to stop it.
Good luck to you all - this is a great site!

runtolive

03-17-2008, 07:23 PM

talk to your oncologist about a clinical trial of trastuzumab-dm1.. its herceptin plus a toxin attached to the herceptin. about 6 gals here on the forum use it currently with good results..

run to live

kat in the delta

03-18-2008, 12:16 AM

Well I haven't been out lately... and I think I stayed in the house for 9 days straight..no sunshine.... after going out that nite..dancing... But it WAS worth the effort and I did have FUN !! Kathy, Do you know any Chinese or Japanese Medicines or alternatives that some people use ??

The bottom of My legs and my ankles have gotten much worse..
They itch and i just hafta scratch 'em at times.....
and I have sores...even more..and in Pain also...!!

. I did read something about these " targeted human growth chemos."..or something close to that... YOU all ...Please HELP ME OUT>>> they were called EFGH's or at least.. Had " 4 " iniatials."..and that these chemos...sometimes turned your cells vs .your SKIN !!! and more....

Anyone know of this??????.

ANYBODY know if HERCEPTIN >>IS classified as one of these?????
I had a bone scan run... abofut 4-6 wks ago by my reg. MD... and he told me to go back for 2 more X-rays... as they may have seen ??2 places( could be arthritis or c.) on my chest and back of my neck.... But I just haven't made it that far yet...!!!
and I lost the only broken at the top key to my youngest son's car--I CANNOT FIND IT ANYWHERE>>BUT STILL LOOKING.. gotta call a dealer with the VIN #..asap. It had been a thrill to have a car-- fairly new + It has a
a CD player ..etc.which I've never had.( being the marytr mom and all).
My Youngest son has my HUSBAND'S " NEW " Truck & he is working with some Amish on a 100 yr old house my husband bought in "Iowa
" near HUNTING LAND, my dear husband bought!!!!

---------------I have been living in LA LA LAND or something!! now
wwwwwwwwoooooooooOOMMMMMPPPPPPPPP !!! what a HIT !!

--( there went the $$$)--my husband is driving his deceased mother's old car ---which is suppose to be Mine. But HE NOW holds the 2..maybe 3 sets of keys..for the moment as he darts a smirk at me digging thru the rubble
looking for that son's 1 Broken key..knowing I have to go to the dentist and do tests..etc....
..... Well, I also thought his parents old house we are now in,
was OURS!!!-- evidently not....
Looks like I gave up my 4-bedr. home for a 2 bedr one.... and got nothing.. for sure!!!! i think that MY NAME must NOT be on this one.
... need to check at the court house..

Herceptin may have gotten the C. for now..., but IT ALSO DID A NUMBER ON MY HEART..as it is not UP to PAR.. LVEF is below 50. My Onc didn't think it was necessary to test my heart.. at the last 6 mos of Herceptin and the Final End one.... ...
...Yes I have finished chemo...

BUT, I feel like I am coming out of a WAR

What WAR??

The WAR of CHEMO.... vs....... CANCER....!!

------and I am hurt--wounded.... in and out.....and do not know where to turn.
.
But for now.. I'm gonna try to sleep on a worn out sofa..with a dog..., not taking a bath/shower either..====... that is just too hard...!!!!

TOMORROW?===.
I have a dentist apt. in the AM...and my husband TOOK the other set of CAR keys from me.............
It's a HARD Enough Trial.to get across town or anywhere these days....and it looks like HE is trying to make matters worse by keeping all keys..and wil Block me from going to the Dentist ...

norwegian

03-18-2008, 01:09 AM

Ah,- I'm so happy about this option to complain a little! It is hard to do it elsewhere, because I feel I should be happy,- and Herceptin is not chemo..and I am happy about that, but....you know..

Anyway, here I go:

Joints pain. Sometimes I feel ( and look like!) as I'm 80 years old when I'm rising from my sofa or a chair. Specially if I've been sitting for some time. I am all stiff in my hips, and my anchles and around the feet. And I walk bend like a really old person before I am able to straighten myself up. Fear:Has the cancer gone to my bone?

Back pain. A strange kind of feeling extremly tired in my back. I went skiing - cross country the other day, and after a short time I had to return because of my tired back - and my short breath.. Often I wake up with this back pain. Fear: Recurrance? Bone cancer

Short breath. Even if I exercise twice a week ( mostly to strengthen my muscles, but also to maintain a better breath. Not heavy exercise!) I don't seem to have any resources! I have checked my heart - and it is fine, but... Fear: Lung cancer? Heart failure?

Nose problems. Soar nose, "crispi" nose, dripping nose, tight nose - hard to breathe.. No special fear (!)

Insomnia.

Hair. My head hair is growing very slowly. On my body - very thin and - well, that is really no problem. I havn't shaved under my arms or on my legs in about one year.

Hot flashes.

Dizzieness. Sometimes only. Fear: Have a guess...http://www.her2support.org/vbulletin/images/icons/icon7.gif

I guess that was it. What a relief to have a little complain about this!!!

4xFEC100 and 4x Taxol. 25 rad.

I will finish my last Herceptin in June. Have had it for one year then, every 3rd week.
The chemo pushed me into menopause.
Have I forgotten something?

Happy Easter to all of you!!

norwegian

03-18-2008, 01:16 AM

- and my swollen body - with fingers like sausages.. and ankels like thighs...

kat in the delta

03-18-2008, 02:34 AM

NORA, Gerri,
Hi ! I've been finished with mine for I think... a yr+( my memory is terrible).
Yes, I am still having some of the side effects,
and a FEW are getting worse!!!

I just read an article in an MD's Journal that gave this opinion(not word for word)..
..as Now more of US are Surviving theChemotherapy & Cancer .Experience..

the researchers are Beginning to see that Dammage from Chemo's,etc.

..may not...even... show up UNTIL...8 to 10+ years AFTER stopping all
chemos,rads,..etc...
No one knew this before NOW...!!..

and......I personally hate to say it ..but most people close to you do NOT understand, nor will Never Understand what this has done to you
...... (( I do feel isolated at times..Thank you for this SITE !!))....
Others may think or Dare to Say:
" NOT HOOKED UP TO AN IV?" Then, "YOU CANNOT HAVE PAIN"!!

Well, I think it is only "AFTER" a PERSON has HAD... ALL ..

chemos, rads, surgery or whatever....
Not until all THIS IS OVER .and the DAMMAGE.. DONE.. IS ..This...
the true..
TIME A SURVIVOR IS STRUGGLING for THEIR DEAR LIFE !!!

This is WHEN almost EVERY CELL IN A PERSON"S BODY HAS BEEN

WRECKED !!! --the DNA or some part of EVERY CELL---SHATTERED !!!!

I think it will take ME YEARS--to build myself back..... if possible I'm trying... to control what I eat.,EXercise.,etc.,
Now STRESS..... is a little hard for me to control..

WHAT DO U THINK .... ???

Yes I have pain.. especially in my lower LEGS!! I think it is Not Only from the Herceptin , but as a result of receiving a combination of Chemo's.,rads.AND Herceptin.... My feet get Swollen...as well as my hands at times... I CANNOT wear any tight fitting socks or other clothing.., my fingers and toes..and feet get numb ..and I feel like I am walking on knubs, my mind seems to wander... and even gropes around trying to find a particular word.... I have a hard time going to sleep .... and really, I just do not look or feel well or LIKE I USE TO Before the Cancer Experience.

I am LIKE I AM>>>>> GOOD and BAD<<< and will NEVER BE THE SAME PERSON AGAIN !!!!!!
NO,, I canNOT do things that were once easily done. I am slower doing and thinking... and I DO NEED MY FAMILY TO PITCH IN AND HELP.

Kat in the Delta

debski

03-18-2008, 03:25 AM

Kat in the Delta

Yes - I understand completely. Sorry to barge in on the chat- but had to say that I feel the same. My oncologist is the most lovely woman you could imagine- so kind and seems to understand. She told me that I may well never get back to normal. That's just how it is so I am going to try to get on with it BUT at the same time I am doing my best to eat well-exercise and be much more selfish.

I totally agree that other people cannot understand. In fact I am amazed at the lack of empathy. If I am being generous I would say that it is partly because they care so much they don't want to believe you feel the way you do- but actually I think we are just all programmed to be selfish.

So I am going to be the same.
Really hope you get through this rough patch soon. I am amazed at the progress I have made recently- but I am not eorking at the moment and that helps- I just sort of collapsed mentally and threw the towel in with work-temporarily.

It is unbelievable what has happened to us all- but I am wondering if denial would be a better place to live!

Love Debbie

miss di

03-20-2008, 04:33 AM

Dear Debski and all,

I totally agree with your onc. It took me almost three years after first go round with the beast to feel better. (chemo and rads after quadrantectomy) People do not understand, they think you are all done with treatment, you should be done! Well it just doesn't work that way. I say, you can not put that much poison in anyone's body and expect them to be the same. I also have scarring on my lung from the radiation. I always believed my breathing "restriciton" was from the rads, but they kept telling me no. On my first scans this time, different hospital, it was the first things on my report, "scarring on left lung related to radiation."
As far as Herceptin, as I stated previously, I took a short break because of side effects, swithched from every 3 weeks to weekly. I did feel much better with the skipped dose, so I don't think it takes long after you stop (in my case) to feel better. I've had 2 weekly infusions now, and side effects creeping back up, but not as bad right now. OWWW, those stupid foot cramps!
My best to all,
Di

Kathy S in Tokyo

03-20-2008, 05:43 AM

The foot cramps are from Herceptin? I was blaming them on the Taxol...
Lately I've had light nasal bleeding, probably from the irritation of a constantly running nose. I just hit the one year mark on the Herceptin treatments early this month and have had Taxol after the Herceptin for 3 out of 4 weeks since last June.

My weight has increased about 30 lbs in the past year although I'm not eating particularly more.

Madge

03-20-2008, 07:12 AM

Very Minor Side Effects--mostly just annoying

Began Herceptin + Taxol (12 weekly infusions)prior to lumpectomy
Stopped Herceptin for 6 weeks while receiving FEC
Resumed Herceptin every 3 weeks -will complete 52 weeks 3/26/08

Acne-- Face, neck and back -began with very first infusion. My Dr. prescribed doxycycline- seems to take care of it (can tell if I miss a day).

Declining vision--although could be age, I'm 43 but never needed glasses prior to treatment

Will take my last treatment on 3/26/08 and feel great---did gain some weight (15-20 lb.) but can't blamed it on Herceptin--my work-outs have slowed down and my eating has not been the most healthy--

looking forward to putting this behind me and dropping those 20 lbs.

ElaineM

03-20-2008, 04:13 PM

Hi,
There was an article in either the current or the previous issue of Cure Maganzine (http://www.curetoday.com) regarding cancer drugs and rashes. Several drugs were tested in a clinical setting and the result was that when people had rashes that is when the drugs were the most effective. Herceptin was not on the list of drugs tested, but rashes and sinus problems are listed among the possible side effects on the Herceptin website.
Also if we are taking other drugs that can also produce rashes the rash might be more of a problem if we are also taking Herceptin.
Family members or friends who appear to be clueless might be going through their own emotional issues, because someone they know or love has cancer and they do not know how to respond or know what to do..
It is difficult to have such people in our lives. I have had people think I should keep up with them 24/7 and people who think I am some kind of invalid. I just chalk it all up to it being their problems and continue to do things my way at my own pace. It is not easy to live with or be friends with some of these people sometimes. Oh well. Life is a learning experience.

ElaineM

03-20-2008, 08:39 PM

Hi,
The family members whose needs, wishes and feelings we should consider are children. Otherwise as long as we are doing our best to take care of ourselves and are working well with our docs that is the main thing.
The best to everyone. Hang in there, side effects and all!

tdonnelly

03-22-2008, 05:19 PM

After my 13th treatment of Herceptin (every 3 weeks) I became very nauseated; this has lasted now for 4 weeks. I feel the constant urge to vomit. I have had no appetite; I force myself to eat 3 meals a day. My recent blood test shows complications with my liver. I decided to forgo my remaining 6 treatments. I fear my body is rejecting the Herceptin; all previous were tolerated. My thyroid disease with liver complications is a real concern. I am just praying my body finds its own way back to normal. No tests, no treatments etc. just lots of rest.
Tamara Donnelly
Invasive Ductal Carcinoma 10/2006 HER2+

ElaineM

03-23-2008, 03:22 PM

Hi T Donnelly and anyone else who is reading this.
I am so sorry you have been feeling so under the weather from your Herceptin treatment. Oncologists and/or chemo nurses might be able to suggest medicine for that. There might be a dietician, nutritionist or natropathic physician in your area who can help you plan a menu that will not make you sick if you decide to try some more Herceptin in the future. Maybe your doc can refer you to somebody for that kind of help. There is a list of Herceptin side effects at http://www.herceptin.com. There might be some information about your side effects there. Everyone's body is different, so not everyone will experience the same side effects from medicines. Hang in there.

fisherac

06-04-2008, 03:04 PM

Wow, all the side effects mentioned seem troubling. Before diagnosis, & for 25 years, I have been a workout maniac and exercised regularly both weight training and cardio. Is there anyone out there like that who can report experiences with regard to its effect on workouts? the weight gain effects trouble me, and if this drug makes one too fatigued to work out, like chemo has for me, i would be curious to know that.

Thanks everyone for repsonses! Anne

harrie

06-04-2008, 11:10 PM

Anne, this is in response to your question about workouts. I am exactly like you....but I am called a "fitness fanatic" according to the inscription on my ipod. Anyways...I had absolutely no significant side effects from herceptin that inhibited my workouts. I, like you, do both wt training and cardio. I also had no significant wt gain from herceptin. Maybe this was partly do to the fact that I was fairly active during herceptin.

I did have to alter my workouts during chemo, but I won't get into that since your question was in regards to heceptin.

Prior to starting herceptin I was also a little concerned like you are because I read so many who had some serious side effects. So what I did was open a thread asking for those who had tolerated heceptin very well and had little if any side effects and I received a good number of responses and I felt better. Fortunately for me, I ended up being one of those who had minimal if any side effects. Hope you will be like that too.
PM me if you have any specific questions for me.
Good luck...
Maryanne

fisherac

06-05-2008, 04:04 AM

Baily, you sound so positive and driven. I hope I can be like you during my herceptin treatment! thanks.

Thanks everyone for the posts!!

Unregistered

06-13-2008, 04:46 AM

I haven't read the whole thread, so please forgive me for barging in. One of my friends recommended this site.

I'm having a TON of these side effects, including a wicked rash that lasts for 5 days, post-treatment. Anyone else have this?
Also: runny, dry, cracked, bleeding nose (by turns)
fingernail flaking
nausea
vomiting
weight gain/loss (also by turns)
headaches
dizziness (could also be the plethora of pre-meds I'm on)
chest pain
tingling in L arm and fingertips

Due for MUGA on Monday morning, but thought I'd post here anyway, just to say THANK YOU for all the wonderful information! It's so nice to know I'm not just a weirdo with these.

I guess I should sign in and make an ID for myself, since I am HER2+++.

Thanks, Janelle (if you're reading) for letting me know about this board!

Becca
DX: 11/30/06 DCIS
2nd DX: 2/28/08 IDC w/DCIS

4 rounds TC - done
52 weeks Herceptin
ER+, PR+, HER2+++

CoachPlayWin

06-13-2008, 04:37 PM

Anne, Mary Ann, etc...
I, too, am an exercise nut. I have done cardio, weights, and played tennis 3 times a week throughout chemo and now Herceptin. I have to say the biggest issue I see is the lack of flexibility in my joints, particularly knees. Also, my muscles seem tight and susceptible to strains. Anyone else? I have not gained any weight on Herceptin; during chemo I picked up a few pounds, but they fell off pretty quickly. If you are worried about keeping up, I think you should be able to do anything you were doing previously.

I do have a "weird" feeling in my throat; almost like a sore throat, but not really. It never really gets worse, just a constant annoyance. Does anyone else have this?

also, the few days right after Herceptin are kind of like a very mild flu...achey and tired. It passes quickly, though.

harrie

06-15-2008, 05:28 PM

Coachplaywin....
Did you ever consider yoga as a complementary workout?
(for your flexibility)
Maryanne

JustwannaBE

06-25-2008, 04:18 PM

Hmmm... I have never posted to this website, but have been reading it since I was diagnosed in May, 2007. I am ER/PR neg, HER2 +. In May, 2007, I had a left breast lumpectomy. Sentinel node biopsy neg. Mammosite done in June 2xday for 5 days.
All is great..Stage 1. Not so fast, pet scan in late June showed mammary gland and supraclavical lymph nodes with cancer. July had port installed. August had mammary gland and supraclivical lymph nodes removed. Started A/C in September 1x3wks for 4 doses. November I started Taxol and Herceptin. With exception to the bone pain of taxol that lasted a week each time (1x3wks for 4 doses), I was in heaven because I almost felt human again on this new treatment. In January 2008 I started Herceptin alone and noticed my hands would swell and my eyelids were constantly swollen, also I seemed to sneeze alot the night of my treatment. Had onc quit giving me the steroids with herceptin and those problems disappeared, but now I find that I have what I refer to as myalga, as I ache all over for a couple of weeks after treatment. I only seem to notice it at night, as I must be too busy during the day working and stuff to notice.. Told my onc and told him I wanted more vicodin, so when I feel achy, I pop a vicodin and it goes away. I also think I have mouse hair growing on me..he he (you know that herceptin is made from the protein of the spleen of mice, don't ya?). Compared to what I am reading, I feel really lucky. Before I started the A/C my lvef level was 75%, after A/C it dropped to 64% and has remained there, as I get it tested every three months. I am kinda worried tho, because in April they found a lesion on my liver and I had a liver resection done to remove it - chevron style - talk about pain.. So, my question to the onc was, if the lesion on the liver didn't show in my June, 07 scan, then how did it grow to at least 1/2 inch between June of 2007 and April of 2008, when I had all that chemo and herceptin...dah... so now I am going to not only be on herceptin, but now tykerb and avastin. I just hope I don't have any problems with that, but after reading some of ya'll on tykerb, I am afraid of getting 'the rash'. My onc says that tykerb will probably cause high blood pressure, which I have low blood pressure now, so I am not thrilled about that. I start tykerb Friday (June 27th), the day after my colonoscopy, so I will know what affects tykerb has without having it at the same time as herceptin. Avastin won't be started for another 4 weeks.

So, I guess I rambled, but in a nutshell, on
Herceptin w/steroid I had hand and eyelid swelling, sneezing only the night of treatment.
Herceptin alone - achyness - myalga (which if you read the side effects of herceptin, that is listed), for which I pop a vicodin - only at night.

tdonnelly

06-25-2008, 06:30 PM

HER2 Friends,
I received my final Herceptin on Monday, June 23. My body refuses to let me sleep. In the past 3 days I have only had 5 hours sleep. I am short of breath again. I also have hypothyroid disease; maybe the two battle each other out:Herceptin & Levothyroxine ?

I cant take sleeping pills etc. This happened to me before in Oct 2006 after my punch press biopsy- 16 days no real sleep ended up in the ER nearly had a stroke. The medical team kind of swept it under the rug and no medical professional ever explained what happened to me; pointed the finger at Mental Illness; no guys it was real not perceived. All things have a way of coming out. The sleep deprivation from bc/treatment has been the most difficult side effect for me.
Tamara
Invasive Ductal Carcinoma 10/2006

Janelle

06-28-2008, 09:34 AM

Becca,
I just saw this now! You're welcome. You should start a new thread so you get more traffic.

Janelle

Rtruett22

07-13-2008, 08:48 PM

DX 12/16/04
Radical mastectomy
2 nodes positive
E-,P-, Her 2 neu +++
Invasive Ductal carcinoma

4 bouts of A/C, 12 weeks of Taxol, Herceptin weekly for one year.

The only problem I had with Herceptin was major top teeth pain starting about the 10th month of herceptin and continuing one month after stopping. I suppose it was sinus but no other sinus problems. I did have problems with my right eye blurring but that started with the A/C. I was able to keep my excercize program during treatment. I finished Herceptin the second week of May 06, backpacked down and out of the Grand Canyon the first week of June 06 and had my port taken out June 17 06. I think the excercize really did it for me, keeping depression at bay.

harrie

07-14-2008, 03:29 PM

Justwannabe,
If you would like, I will be happy to paste and cut your post to start a thread of its own with it. You will probably get more responses by doing so.
Just let me know.
Maryanne

westswon

07-16-2008, 07:40 AM

Hi to all of you. As usual, I am spending the last few days prior to infusion dreading another round of Herceptin. It makes me ill while getting the infusion--to a point that I have copied pages of this forum and am TAKING it to the ONC nurses who keep telling me it is "stress"... (okay you taste and feel this way....)

I am also down to 7 more radiations so the fatigue of it, combined with the H is pretty grueling--along with the lack of sleep, still exercising (mildly now) daily, woke with a nosebleed.

My hope is that I can somehow "make lemons out of lemonnade" with the H..since I have to get it until March 2009... every three weeks...

Anyone out there grinning along with the aches, nose issues, dry eyes, slow hair growth, HORRID foot cramps? I take compazine during the infusion--so the day is basically toast...
Thanks for letting me fuss... I know it is a miracle drug but the side effects sometimes make me wonder if the "juice is worth the squeeze"... Fussy Westswon

Lani

07-16-2008, 12:26 PM

Several on the board have noted that asking for the herceptin to be mixed up with normal saline rather than the benzoyl alcohol has helped relieve some of the joint complaints they noted and had attributed to the infusions (rightly or wrongly as chemo and estrogen depletion whether due to AIs or as a result of chemo don't seem to be too nice to the joints either)
Hope this suggestion is helpful

ElaineM

07-17-2008, 09:29 PM

I know this is easy to say, but most of us have side effects of one kind or another and most of us have our ups and downs. Feel free to share your frustrations anytime.
The way I can live with the side effects and my ups and downs is to think and believe "I am still alive and kicking and that is a blessing" even with the side effects. The meds are helping to keep us alive and that is a good thing even with the side effects.

tweet7805

07-26-2008, 10:51 PM

I was 53 with prognosis of IDC Stg IIB PR/ER neg HER +++ Tumor Grade 3 when I started Herceptin/Taxol for 13 weeks after Lumpectomy & completing 4 X AC. I had bad reaction to Taxol so only completed 3 changed to Taxotere/Herceptin for remaining 10 weeks but stopped after 9 due to drop in blood oxygen to 78% which caused perm dmg to left lung. Took a month off everything then started 33 daily rads with Herceptin every 3 weeks for remainder of 9 months but due to MUGA in Dec 2006 drop to 51% from orig of 83% Herceptin was stopped 4 months early. I have terrible nail(split, break, etc)Neuropathy in both feet and hands so bad I have to look down when I walk as have tore the ACL in my knees from falling so often, no short term memory, have trouble thinking of words to make sense when I talk & bad attention span, have shortness of breath and extreme fatique and this is after being off Herceptin for 18 months. My onc says some of these side effects are probably due to chemo also. I am no longer able to work on disability but I would definitely take it again the side effects are bad but I am still alive and kicking able to be with my husband, family, friends & watch my grandchildren grow and enjoy life to the fullest. God Bless.

Mary Jeanne Phillips

07-27-2008, 03:20 PM

Hi Lani, Great survey. Diagnosed in June 2001,Her 2 positive pro.positive, no lymph node involvement but eschemic evidence.Had radiation regime and then 5FU and Cytoxin I think. Mets to liver, lungs, and bones in 2004, then brain mets in 2006, had craiotomy, mets to brain in 07 and 08, had gamma on them (5 tumors in all.) Started Herceptin after craniotomy in 06. Have taken zometa since 04 I think. Took Femara then for only 6 months. that is all the chemo I have done. I started Macrobiotics in 05. Tumors have remained fairly stable except for brain mets.
I didn't think I had any side effects from Herceptin because I got up evry day and didi my life activities. But now that these things are mentioned I realize I have had terrible sinus, splitting nails, (or thin to no nails) hair condtion. RBC holding but not good.My energy levels have been good most of the time. I am a very high energy person, so that is why I have not taken any systemic chemos up until this point. since Herceptin is a targeted treatment, I felt "safe". I do have terible hot flashes but am post menapausal and have had terrible hot floashes for years. That is why I took HRT for 12 years.
I am in the delimma of what to do now with the offer of Tykerb without Xeloda since there is progression in all the tumors and the mets to the brain.
I hope this helps but basically I am thankful for Herceptin and the low side effects for me. I guess I just take the way I feel for granted and have not blamed it on Zometa or Herceptin.
Would love to hear from anyone about Tykerb. Mary Jeanne

Mary Jeanne Phillips

07-27-2008, 03:34 PM

I don not know how to start a thread. Is there anyone who could help me?? I reply to others but wanted to post one. I wrote it out in the thread section, but didn't know how to send it. THANKS Mary Jeanne

Elena

07-30-2008, 11:05 AM

Hello everyone. I was diagnosed in Aug/07, Stage 2B, ER-, PR-, HER2neu+ Grade 3. Did chemo (Epirubicin, Cyclophosphamide, Taxol) which ended last Feb 1/08, finished 32 rounds of radiation, and now just doing solely Herceptin every 3 weeks. I am so looking forward to the last infusion on Dec 12/08.

Thanks for all your posts about the side effects of Herceptin. It is from the experiences of others that I can validate my own side effects. Since it's been 4 months since my last radiation and 5 months since chemo, I still got to feel some other side effects for which I have Herceptin to "blame". I think the worst side effect I got is a terrible headache from the infusion (once a terrible vertigo), thin nails that get easily cracked, some memory issues (although chemo should be partly to blame this time). My own MUGA tests are okay so far.

Over all, I'll have the s/e anytime as long as this drug will keep the cancer out of all of us. Wishing everyone the best!

rosemary

07-31-2008, 11:28 AM

I was taken off Herceptin in April because of congestive heart failure. I had a dose dense schedule of adriamycin and cytoxan and then taxol and herceptin. While I was taking Taxol every 2 weeks I had Herceptin every week. When I finished with the Taxol I went to Herceptin every 3 weeks.
After 11 months of my year of Herceptin I ended up in the hospital with congestive heart failure. My oncologist said it should not have happened so late in the herceptin treatment or gone down so much so fast. But how would he know I am only his third case of congestive heart failure after Herceptin. The respiratory infection that I had had for 3 weeks may have contributed.
On March my Muga scan showed a left ventricle ejection fraction of 49. On April 29 it was between 15-20 by echocardiogram.
My heart is getting better. My echocardiogram was at 25-30 a couple of weeks ago and I continue to feel like I am improving.
That was the big problem I had with Herceptin. After I had been off of it for a while my fingernails and hair were much better. I can actually grow fingernails again and my hair is getting thicker.
I have less energy but who knows whether that is from my heart, the chemo or herceptin.

Mary Jeanne Phillips

07-31-2008, 06:04 PM

I have to tell everyone, My MRI of the brain after my 5th met to the brain was negative yesterday,. That means all the 5 tumors from the craniotomy and the last 2 GAMMA;s, show no increase and no new tumors. The ones that have been zapped are smaller or non existant and no increase in any of the others. I am a happy camper and so excited. MY neuro surgeon said he would not worry about the brain anymore but would start concentrating on the ones in the lungs. liver and bones.!!! I wonder if anyone out there knows if tykerb has been effective on mets to those places? would love to get some feed back on that issue. Thanks for this wonderful site. I will have another baseline PET to see where I start out with the Tykerb and measure its effectiveness on the brain, liver, lungs, and bones.
I can only believe it will do the job. Thinking of all of you and being very grateful for the wonderful life I have had for the last 7 years. Mary Jeanne My quote is: I want to be ALIVE when Death finds me.!!!!

Alyce

08-11-2008, 11:32 AM

Hi All- I had 4 rounds of chemo with Herceptin every week until chemo was finished. I had 6 weeks of radiation and continue with herceptin every 3 weeks. I started Femara in May. I was early stage with 3 benign nodes removed and clear margins for lumpectomy.
All the chemo side effects seem to have disappeared. I had numbness in one foot and one hand. They are fine now. No memory issues that I could say are any different than pre-chemo. I do have a chronic dry cough that was checked out by my Physician who couldn't find any other connections to respiratory problem. It seems to be lessening. I also have the "herceptin" runny nose. I feel that the lifestyle modifications I have made are serving me pretty well. I swim 5 times a week to keep my joints moving (no pains at all). I eat only fresh fruits,vegetables, beans. Little dairy except for plain yogurt. Very minimum soy products, Rice milk, whole wheat breads, pasta, a little bit of chicken or fish once in awhile. No sugar!
I do still have problems with insomnia as I start to get into too much negative thinking when I get to bed. I am taking ambien for that and it is working well for me.
I am so thankful for Herceptin. The "cancer life" really takes over your every minute if you let it. I keep hoping that time will start to get my anxieties in check. I go for a massage every week, meditate every day, and acupuncture periodically. We have to be our own advocates at times and my goal is to keep working on a healthy life style.
Best wishes to all my sisters!

Her2nSue

08-19-2008, 09:49 AM

Hi Ladies, it has been a little over a year since I've been on this site. If memories are somewhat intact, I was diagnosed with IDC 10/05, had L mastectomy. Luckily, no nodes were involved. Two weeks out of surgery and inn November started with the several stages of Chemo. Cytox/Adriamiacin for once every 3 weeks, for several months, then on to herceptin & taxol for every week for 12 weeks. Body holding up pretty well during this time frame, fatigue, like you would not believe, but doing o.k. After this round of H&T, I was put straight to Herceptin for once every 3 weeks. I believe that was in the month of April and was to continue through the end of Feb. Things started to go awry after several doses of Herceptin. First I crashed on potassium and the nurses wouldn't let me leave until I had 4 hours worth of potassium pumped back into me. O.K. Tried to go back to work, but started having difficulty in breathing like I was going up hill all the time. Time for a muga check...yep just as suspected, congestive heart failure. Out of work and on to meet with cardiologist. Received new meds through him and set up to go back in 3 weeks for recheck. O.K. after a bit of rest, went back to work (special ed. associate for middle school). After 2nd week back to work, I'm feeling drunk all the time, off balance, not saying the words I want to say, want to say white and I say vanilla instead. Husband and family think this is hysterical! I'm getting concerned. Last straw was I got lost in the school I work in. Supposed to be in one room and was totally in the wrong spot with the wrong student, oops. Have made several calls to the oncologist, they say to call the cardiologist as he's the one that prescribed the most recent meds. O.K. have an app't with him, he thinks I'm a hypochondriac, he doesn't see anything wrong, I should go see my family Dr. and see what he thinks. I'm furious to think that this doctor and all his worldly knowledge thinks I'm a nut case!! My hair was flamming (had red hair before chemo, too) I then make an app't. with the oncologist for the next day and explain all that is going on and that I'm not a nut case, something is not right and please somebody figure out what it is. He gave me a sobriety test with touching your fingers to your nose with each hand and standing on one leg for balance, standing on both legs and then see if I can continue to stand and not lose balance while he pushes me. Fail all of the above. Schedule me for an MRI and take blood tests. He gives me a call and tells me I'm in renal failure on top of the congestive heart failure, whoo hoo. Out of work the rest of school year from March thru May. O.k. thinking I'll have all summer to relax and regain my strength and be fully rested mind and body wise with the start of the next school year. Ha! Not so fast....My husband then turns around in June and files for divorce. Now isn't that some kind of man. Only out of dealing in the knowing that I have cancer in 05 go through all the chemo, having side affects, just getting over them and now this. I realize God does not give us what we can't handle, but my shoulders are starting to sag under the pressure. My husband dragged out the seperation for a whole year, with no support, I went back to work, but the immune system still isn't up to par. Had sinus infect., bronchitis (twice) and topped it off with pneumonia. Had stress that just seems to be part of my daily makeup (forgot, it was also my daughter's senior year in high school, too) and had head games played by the husband throughout the winter. Finally got divorced this June and was given 30 days to move out of the family farm. Honestly, Ladies, how much can a person take with out the thoughts of signing papers to be committed to the nearest loony bin??? I have found a small house to rent. My garage is full of my life that has to find a place in this tiny house. I feel so overwhelmed with EVERYTHING on top of the joint and body pain not to mention the never ending fatique. I'm coming up to my 3 year BC survival anniversary, please keep a prayer going that it will be a bright star to celebrate something happy after all of this mess. Anyone out there know of a ghost writer? Maybe I can write a book: If I can keep smiling, so can you" What do ya think?

ElaineM

08-19-2008, 03:41 PM

Hi,
I can't be your ghost writer, but you deserve a thousand gold stars for hanging in there and surviving though all that you have been through. The May/June 2008 issue of MAMM magazine (mamm.com) had a couple articles about people who live with cancer (and its "side effects")and the fact that they should be recognized. All we read, see and hear about are the folks who survive after only a few months of treatment. The folks like alot of the people on this site who live with cancer for many years need to be publically recognized too. Writing a book or starting a blog on a very visable site is a great idea. Go for it when you have the energy!!
I will be thinking of you.

gin-tx

08-22-2008, 05:35 PM

I am so sorry you had such unfortunate side affects to Herceptin and other drugs. I was diagnosed in 2006, second diagnosis, first in 1995, had lumpectamy and radiation, no chemo which I should have had. By time I was diag 2nd time, it was in spine, spread to other breast and is very aggressive. Had 18 rads on spine, and presently getting herceptin with aredia and responding very well according to my onc. I will neve be able to stop the treatment as the aggressive cancer will return. Keep me informed of your progress and I wish you only the best.

ginkott1@aol.com

drnix

11-17-2008, 04:02 PM

I have been on Herceptin since 12/31/98 (for 5 1/2 years it was weekly and now every 3 weeks) and really have not noticed any significant side effect issues. My hair has always been thin; my memory is not the best but I figure age (61) being a factor; leg cramps come and go so I figure diet issues; no weight gain or loss; the darn stuff has been a HUGE blessing for me.

MaryAnn-CA

11-17-2008, 04:22 PM

I have been on Herceptin since January 2007 and will continue on it until January 2008. My first and second echos showed an LVEF of 79 and 71 respectively, however my doctors felt that these were artificially high for some reason. My third echo came in at 65, still good and the last one I had a month or so ago was 58. So, Herceptin seems to be having some effect on my heart but so far there is not enough concern to discontinue it. I have consistently had nasal problems since starting chemo (TCH) - a little bit of blood, dry nasal cavities, etc. - and the problems continue on Herceptin. Recently, I have developed sinus headaches which I plan to report to my onc tomorrow at my checkup visit. I read that quite a few of us have sinus problems on herceptin so I am trying not to worry too much about the headaches at this point. Cheers to all!

Joan M

11-17-2008, 06:20 PM

I took Herceptin off-label every week concurrently with Taxol when I had early stage bc, just before the HER2 trial ended. When Taxol ended I continued Herceptin for a total of 52 weeks.

I resumed Herceptin when I became stage IV three and a half years after my initial bc diagnosis, and have been taking it now for about one and a half years.

The only side effect was a drop in LVEF of more than 10 percentage points (from 70% to 57%) last year, at which point I stopped taking the drug for three months. My LVEF then climbed to about 63%, which is about where it was throughout the adjuvant treatment.

Terri B

12-26-2008, 11:02 AM

I was on herceptin with taxol weekly from june 2008 to Aug 2008. Now after finishing FEC, I am on Herceptin every 3 weeks until June 2009. My side effects that I can see so far:

Pain: Back pain leg pain when i've been sitting a long time

Sinus: Stuffy nose especially when laying down

Nails: like paper

Smell: Medicine smell in urine on day one and two after infusion

Skin: "crunchy" feet. I lotion them all the time. before i go to bed, and i will be awakened by "crunchiness" and have to re-apply lotion!

I'm not complaining though; imagine where we'd all be without herceptin!!

Adriana Mangus

12-27-2008, 12:38 AM

Real? Yes, very....I have been having these terrible heartburn episodes, it only happens when am laying down, it got so bad tonite, I thought I was having a heart attack. Felt like vomiting, sweating, bad taste in mouth...awful!!!!!!!!!!!!

On Tykerb for the last six weeks + Herceptin (since2003)

I have never felt so sick in my life. I thought I had eaten someting rotten.

Will be seeing Doc January 20th, have a lot of questions about Tykerb.

Anyone with similar side effects?

I appreciate a response....Thank you

Adriana

Unregistered

01-25-2009, 11:49 AM

OMG this thread is a life saver. I had ac T and had horrible leg pain with the taxol. And we're talking horrrible crying pain. It went away and then I started the herceptin after surgery and im back to leg and back pain! Nothing like it was the the taxol, but continuous crampy achy legs and cracking pain in my knees, fingers hips. I started jogging thinking that would help, bad idea!!!! My onc has me scheduled for a lower back xray, but im convinced now its the herceptin, just something i'm gonna have to deal with i guess, cos theres no way im stopping!!
Hugs everyone,
Laura

YNieves

04-12-2009, 06:31 AM

I started my chemo this past wednesday. Taxotere, cytoxin and herceptin. The 2 chemo meds were well tolerated. Half hour into the herceptin, My chest closed up and I spent the next 5 hours in the ER! Thank God 2 nebulizer treatments, and magnesium sulfate brought me out of it. The next step was going to be epinephrine and possible intubation. They are considering trying to desensitize me to herceptin so i can try it again and accept it. Seeing allergist on Tuesday. I am Her 2+, stage one, ER/PR neg, 1.4 cm tumor, no mets or lymphm nodes positive. Mastectomy. Previous DCIS 2004 stage 0, received lumpectomy and radiation. Clear lyphm nodes. Herceptin episode was scary especially for my husband. I have to decide if I want to chance having another reaction during desensitization. It is so serious they will only try it in the ICU just in case??? Has anyone out there ever gone through desensitization for herceptin.? I'm a nubie so forgive my excess writing.

Alyce

04-13-2009, 07:02 AM

I completed Herceptin a few months ago and did not have any side effects that I noticed. I did have some issues with fluttering heartbeats that were problematic but probably not from Herceptin. I have heard that many women have had to stop it for awhile. I hope you will have better luck with it and that your side effects will diminish. What has helped me tremendously is swimming, really good diet, meditation, and Anti-depressants!

Rich66

04-13-2009, 12:59 PM

1st infusion, 4mgh/kg Herceptin monotherapy. About 2 weeks in, Mom seems to have runny nose and sores on her lip. She's wondering if these are similar enough to cold sores to be potentially contagious/infectious. ??

YNieves

04-15-2009, 03:46 AM

Thank you for your reponse Alyce and Rich 66. I met with allergist. He is going to set up a protocol for my desentization of herceptin for next Wednesday in ICU. I haven't decided if I am going to do it. Still praying on that decision.

Marily

04-15-2009, 02:30 PM

To anyone haveing desensitivation for Herceptin... I have had to stop my Herceptin due to two very bad reactions in the past two years with severe headache and "an outer world feeling like being outside of things looking in" dizziness and lethargy and muscle spasms. I also had very severe CHF about 4 years after taking. We stopped for 4 months I went on cardac meds and now muga is good. I would really like information on getting back on Herceptin. My Onc already has said he would not restart it unless I was in the hospital. How did you start at what dose and speed? and how fast did you get back to ?loading dose or normal dose? Thanks Marily

YNieves

04-16-2009, 07:23 PM

Saw allergist today. Tested my skin with Herceptin and Taxotere. Showed allergic reaction to both. Face and neck broke out in blotchy hives. Next step desensitization in the hospital ICU so all precautions are taken. I am thinking of fore going the Herceptin for now, finish chemo in June '09 and then try to be desensitized and do the year of herceptin. This is doable , right? AS LONG AS I'VE HAD THE CHEMO I CAN DO THE HERCEPTIN ANYTIME IN THE FUTURE????? Anyone????

rl2

04-16-2009, 08:37 PM

On from 3/2007 to 3/2008. Multiple UTI's, a few red patches on skin (that have never gone away), and for the last couple of months while on it, muscle twitches, particularly in legs, which resolved a couple of months after finish.

Rich66

04-17-2009, 11:16 AM

Interesting. I have not heard of skin testing for chemo reactions...or other medications for that matter. I thought it was lmited to naturally occurring allergens like grass, dust or pollen. That's good to know.

Regarding the Chemo/Herceptin issue. I believe that depending on the chemo plan and other factors, there may be added benefit/synergy to having them concurrently. I don't have the sense that it never matters.

Laurel

04-17-2009, 05:59 PM

YNieves,

I am not certain that you will wish to wait a protracted amount of time to do the Herceptin. One of the reasons they feel TCH has been showing results that are so positive against Her2 cancer is that the Herceptin is begun with the initial treatment. I am no authority. I am wondering if your docs have considered a more modest dose of both Taxol and Herceptin?

Please post this question on a separate post so some of our proper heads can respond. It is lost here on this thread and it seems quite important.

Rich66

04-22-2009, 06:41 PM

Another thought might be to try Tykerb if Herceptin is too problematic. Would probably be "off-label" but possible.

tdonnelly

04-22-2009, 10:14 PM

My thyroid disease clashed with BC punch press biopsy and red pill - Levothyroxine, chemo & Herceptin treatments. TSH too high then too Low. Last Herceptin was Sept/Oct 2008 and recent bloodwork showed too High. Levothyroxine was 175 mcg (purple pill) for 1 yr (too high) reduced to 150 mcg last month (blue pill.) I still dont feel well. Is there a Doctor out there that Knows How to Care for Hypothyroid/Breast Cancer? I gained 65 lbs to date since all this began in 10/2006. Dont tell me to see an Endocronologist I was seen by two quacks already.

All these irradic levels of TSH and Thyroid Pharaseuticals are causing additional health problems.

I put in an email to Dr. Oz on Oprah for investigation and answers...

juanita

04-27-2009, 05:22 PM

i have another sinus infection and i never got them like this till after i did herceptin. that is the one thing that has not gone away. well, that and a little neuropathy but that ain't as bad as these sinus infections.

DianneS

05-01-2009, 04:12 PM

Hi all - again,

I posted a thread about Herceptin related side effects not realizing that this thread was so long! I thought the last responses were in '06. Duh. Good that I found the rest of the thread...chemo brain....:)

I have the nice leg and feet cramps. My family doc gave me a prescription for compression hose, which helps and also helps with the possibility of getting varicose veins. Apparently chemo damages the valves in esp. the legs, causing legs/feet to swell and veins to burst....chemo, the gift that keeps on giving, eh? I'm hoping this is temporary.

Diarrhea almost daily, slowed down somewhat with aloe vera juice mixed with any other kind of juices. 2 ozs a day. Seems to help with acid reflux as well.

I seem to have an all-over achiness in the early morning hours. It disrupts my sleep. But once I"m up and walking around I'm ok. I'm on Herceptin only after finishing 5.5 sessions of Taxotere and Carboplatin March 12. My most recent Herceptin was April 23. I get them every 3 weeks.

Besides the side effects mentioned above, I get a rash in different spots, mostly on my legs.
Dry eyes alternating with runny eyes and nose, fatigue. Some days I feel almost normal but then it feels like someone took my batteries out - my energy just goes!

Is there any evidence to show that doing 9 months or a year of Herceptin makes any difference? I think I read that in Europe, they are finding that 9 months does as much good as a year? I'd like to get off of this stuff.

I think my diagnosis will show up at the bottom....if not, it is:

DCIS 50%, IDC, right breast, 2.1 cm tumor, no vascular invasion or lymphatic invasion found, bilateral mastectomies done 9/08, Stage 1 or 2A (because of tumor size) Taxotere/Carboplatin/Herceptin begun Nov/08, completed March 12, still doing Herceptin x 3 weeks....yuck.....

Thanks all,
Diannes

Terri B

05-04-2009, 02:49 PM

Ladies and Gents:

I recently started having puffy eyes when I wake up that lasts for hours. The kind of eyes you get if you cry yourself to sleep the night before! It is very alarming! Also, i noticed that my lymph nodes on my clavicle on the breast cancer side puff up sometimes too!

The sinuses, the sinueses ugh. and the crunch, burnt, peely feet! whaaa

Alyce

05-06-2009, 08:12 AM

Hi Dianne- Just read your post. Of all the crazy places to find answers- I was having a massage in Sedona, Arizona by an Aruvedic Nurse (yes both nurse and Aruvedic!) I had been having horrible leg and foot cramps. Without missing a beat she said I needed magnesium. Bought some tablets and NO MORE leg and foot cramps. I couldn't believe the answer was so simple. I swim 3 times a week so I don't have any joint or body aches. I attribute any good stuff without side effects, to lots of reading about nutrition, mental health care and actually making the changes.
No more processed foods, only yogurt and a little cheese for dairy, lots of fruits, veggies, whole grains, beans, a little grass fed beef and some salmon. I also continue with counseling and antidepressants. It is a new "normal" that really takes some work. Do you have access to find some support systems?
Alyce
2008 - HER2 positive, stage 1, chemo (4 rounds), Herceptin (one year), Radiation, Femara

StephN

05-06-2009, 09:41 AM

Terri B -
Don't know what to say about "burnt, peely feet" except that mine peeled from the chemos and healed well all the time I was on Herceptin.

If you are feeling VERY puffy and it goes down in the day and comes back during the night, you may want to have your port checked for a clot. The puffy, teary eyes, worse in the morning, was a big sign of my clot.

Watery eyes from Herceptin, but should not be puffy.

DianneS

05-06-2009, 05:40 PM

Alyce,
That is good advice. I tried magnesium but I get diarrhea from even 250 mg cut in 1/2 - so what to do?
I too have changed the way I eat - not that I was eating processed foods to begin with, but I have added more fruit and veggies. We aren't meat eaters except for chicken and I buy that organic. No, I don't have much support as I live in a very remote area in B.C. Canada. I'm not much for joining groups anyway, and feel this is such a personal thing that I don't want to discuss it with counselors who haven't 'been there' so to speak. I'm dealing with it ok, I guess.
My eyes are mainly bugging me right now. The eyelids are red and look like I've been crying. Eye doc said to put moist heat on them which I have not done yet :) I don't have a mediport and never did so it must not be a clot, as one poster mentioned (can't see your post, sorry) I assume Herceptin causes irritated eyelids. Eye doc said my eyes are dry so they over compensate by making too many tears. Did anyone find any over the counter stuff that helps stop this? I hate going outside looking like I've just had a good cry.
Thanks,
Diannes

rondo

05-12-2009, 12:32 PM

See signature for history; currently on q 3 wk herceptin only. 3 treatments to go, I think. Have night lower leg/foot cramps, getting worse, although calcium/magnesium supplements do help a lot. Crusty nose at night. Fingertips split, skin rash, and acne after every treatment. Clears up and recurs every time. Nails are brittle for the first time in my life. Hair is OK. Near vision went bad when started chemo and has improved maybe a little.Weight stable, but I have become a VERY disciplined eater.
Fatigue just came on a couple of weeks ago and it's bad. I never was tired, even while working full time thru taxotere/carboplatin and radiation. Occasional mild diarrhea. Had bad gastric reflux while on chemo but none since.
Here's my question: when I complain about these side effects to chemo nurses they assure me that the worse the side effects are, the better the meds are working. Is this just bull**** or is there some science to back up that contention?
I complain only so they are aware of the side effects; I fully understand and appreciate that these treatments have at least given me the opportunity to live a normal lifespan. Thjat's a pretty good tradeoff.

DianneS

05-13-2009, 02:00 PM

Rondo,

I have fatigue as well, but I just finished 5.5 rounds of Taxotere/Carboplatin (with Herceptin) March 12. Possible I am still getting over the toxic stuff? I feel better than I did 6 weeks ago. But. Yesterday I was out & about doing errands and my energy seems to stop about 5-6 hours - like someone pulled my batteries out! I did have to fast yesterday for some bloodwork so ate late, then took a long walk and was on my feet until dinner time. My legs felt like they weighed 100 lbs more than usual, very achy and tired feet. Headache as well. I just went home & stayed in bed! Today am better because I haven't done anything but hang around the house.

I also have paper thin nails, some parts of both big toes have nails that look yellow, numb toes especially at night, runny eyes and nose but not all the time.

Does anyone else get watery eyes from Herceptin? I went to the pharmacist as well as asked my doctor and both could not find anything about Herceptin causing watery eyes and red eyelids. But I didn't ever have this before I started Herceptin!

As for it working better the more side effects you get, I was told this is not the case by both doc and nurses. I don't think it makes any difference. Some people may be more allergic to the ingredients in Herceptin than others. I have never needed (nor is it the protocol in B.C., Canada) Benadryl before during or after Herceptin.

Hope this helps?
Diannes

DianneS

05-13-2009, 02:05 PM

Hi Terri,

Try a rich, creamy foot cream for your feet just before bed, then put some socks on (I know, not very sexy) and leave them on all night. I did this all through chemo and it really helped....afterwards as well.

For sinuses, try "Ocean" nasal spray to keep the membranes hydrated. There are other brands with similiar ingreds. and at least there are no chemicals in this stuff, just natural.

Hope it works for ya,
Diannes

DianneS

05-13-2009, 02:22 PM

Hi Terri,

So your eyes sound like mine. I look sometimes like I've been on a crying jag, esp. when I wake up in the a.m. Everyone in the medical world says they don't see anything about Herceptin causing it. Yeah right.

Have you found anything to help?

I sent you a reply that might help your feet and sinuses. This stuff sucks...my doc/onc calls it 'baby chemo'. Is she crazy?

Diannes

Terri B

05-15-2009, 11:31 AM

Dianne, Steph,

Yeah, I'll be seeing my onc on Monday. I will tell her all about my issues. I'm almost done with my year. I think I have 2 treatments left. Muga keeps dropping slowly. Last one was 53.

I just feel UGH. slow, sluggy and worthless.

Steph, if i have a clot, will my port work? because my port has been working okay.

It's like I have allergies, and I never had allergies before. I have really bad nights where my nose is so clogged that I snore (at least that's what my daughter told me :D) It's those nights that I wake up with the puffy eyes.

but i have hair!! :D

Terri B

05-15-2009, 01:37 PM

Oh yeah, and I forgot to mention...

My lymph nodes seem to be puffy too. On the clavicle (right side). I don't feel them, like rocks, it is a soft, puffy area. When i look in the mirror, you can tell that the right side is puffed up. I saw my breast surgeon last week, and she said that she wasn't concerned because they weren't "hard". But she told me to point it out to my onc when I see her.

I'm just one big puffy mess.

Cal-Gal

07-10-2009, 07:07 PM

Fatigue
Painful joints- hips, knees, lower back.

pmm10414

07-26-2009, 07:31 PM

I took Taxol/Herceptin prior to surgury and now am on Herceptin only weekly. I will go to every 3 weeks soon. The biggest issues are with my nose -- doctor has me taking daily Claritan which seems to help. I have some soreness but am not sure if that is still from my surgery -- bilateral masectomy 4 weeks ago. Radiation not started yet.

Lani

09-21-2009, 06:30 AM

bumping this 3 1/2 year old thread up. It holds quite a wealth of information thanks to the over 440 contributions from her2support members

juanita

09-21-2009, 09:07 AM

i think the main problem i have still is sinus problems. they just won't go away!

bejuce

09-22-2009, 06:20 PM

My teeth seem to be very sensitive now, especially when I eat something. I haven't had this feeling before and it's hard to explain. Has anyone else experienced weird teeth sensations/pain while on Herceptin?

Thanks!

Cal-Gal

09-22-2009, 07:02 PM

Hello bejuce-

Interesting that you posted this.

Yes-just recently this past week started having sensitivity in my teeth-and I did not relate it to the Herceptin!!!!

I have completed 15 treatments of 52 --

All of a sudden I am sensitive to cold-sweets-

Jackie07

09-22-2009, 07:48 PM

Be sure to gargle with salt + specks of baking soda after every meal and before going to bed.

DianneS

09-22-2009, 08:56 PM

Diarrhea more frequent around herceptin infusion. Runny eyes, drippy nose but not all the time. Leg muscles more fatigued than usual after walking (but I did 2 hr hike today) lower leg/knees/ankle feel sore or puffy or something. My feet hurt first thing in the a.m. until I get moving around.

Hot flashes! Is this associated with herceptin? I was wondering. I am postmenopausal since bilat oophorectomy Feb. 2008. How long do these hot flashes last? I am not taking any Taxoxifen or AI's that might cause it.

Oh yeah. Occasional cough - from drippy nose?

Also my eyelashes are growing towards my eye on my right eye. I have had to have the doc tweeze them out more than once. It's only about 4-6 eyelashes but I never had this before chemo/herceptin. They are recommending I get the offending lashes lasered to kill the follicle. Chemo: the gift that keeps on giving.

Dianne

Marily

09-23-2009, 12:11 AM

I have had very weird feeling in my teeth and sensitivity to cold especially . I have been going to my dentist about every three months since we found weird little worm like holes in a couple teeth ( a friend also had this same thing happen to her teeth on Herceptin.) I have not had cavities but had to have the teeth with the worm holes (sorry about that) drilled and capped. I really do not know the reason? but I have learned not to drink icy cold water etc and just have the dentist watch my teeth.
Not much information on why but hope it helps to know others have had similar side effects.
Marilyn

harrie

09-23-2009, 12:25 AM

Re: teeth sensitivity
The most common reason why teeth are sensitive is because of root exposure above the gumline. Even with a small amt of gum recession and root exposure, sensitivity, can occur. The sensitivity will mainly be to either cold or maybe brushing.
Clenching can encourage this to happen. Many times people clench while stressed.
It is not unusual for people to have more recession as they age. with acidic types of food or drinks, erosion can occur and then can also contribute to cold sensitivity.
To minimize or eliminate the sensitivity, you can rinse with a fluorided mouthwash such as ACT which contains fluoride.
OR...you can use a sensitive toothpaste. (sorry Jackie, but I don't think salt water or baking soda will do much)
If you can pinpoint the spot of sensitivity, you can also dab a bit of the sensitive toothpaste on the spot and leave it on. Dont rinse it off. Put it on before going to bed maybe. It may not work after one treatment, but after doing it for a wk or so, it should help significantly.
HOpe this helps.
Maryanne

Jackie07

09-24-2009, 03:15 PM

No problem, Maryanne. I was just relaying what I was told during chemo. You are probably right, because later on I needed to use the 'Swich' (licodine, malox, and ?)to treat mouth sores. (Sorry, evidently I was thinking about something other than sensitive teeth. But my Father-in-law has also been told to gargle with salt and baking soda to strengthen his gums :)

Brenda S

10-05-2009, 05:31 AM

Since ending my chemotherapy--see below-- I have continually endured significant bone aches. I have an especially painful right hip. The "pain" is ongoing and is ever present.

pmm10414

10-08-2009, 07:38 AM

I had pain for a long time and still do somewhat while still on Herceptin. As painful as it is I see exercise as helpful. I go to physical therapy which also help.

PatriceH

10-26-2009, 07:14 PM

Yeah, I'm not crazy. I finished chemo (taxotere/carboplatin) in June and am just now restarting herceptin...most of my joints are painful. After sitting, it takes me several steps to get going. I tell people "I can't go 0-60, like I used to." My hands hurt, my feet hurt and are changing. I have neuropathy in feet and hands, it is getting better but the middle finger on my right hand...oh my! I had been wondering why I could barely get around...force myself to walk for exercise because I love it.

margiermc

11-01-2009, 12:23 PM

I'm on herceptin every 3x - a long 90 min. infusion. Bad taste, urine
smells, and blow my nose i can smell the chemical. I drink 8 glasses of water day before and after - this keeps all side effects down. I eat small before treatment. After treatment, I eat something light. I sleep after treatment - my family cooks and takes care of things, they know it's herceptin day. I get bloody irritated nose - when I blow, it hurts and same area of my neck and in ear - sinus is really a big side effect. I take saline nose drops - to clear sinus. Other than that, walk and keep healthy diet. But, def. drink lots of water day before and after treatment - it helps the kidneys flush chemicals out.
I learned this all from a handbook rec'd about herceptin at my chemo. clinic.

margie

SoCalGal

11-15-2009, 12:54 AM

after about two years on herceptin, the man in my life leaves. he gets tired of my side effects (see all 23 pages of this post for clarification on s/e's)

I wasn't positive it was the herceptin, but it's happened twice now. Sigh...

ElaineM

11-15-2009, 11:36 AM

Sorry Flori. Some men just can't handle a strong woman like you. There are alot more fish in the sea. Smile.

v-ness

11-15-2009, 04:42 PM

i just started herceptin on october 8th and am currently getting it weekly for my 18 wk chemo tour of duty. i am salivating like pavlov's dog. i'm assuming it's herceptin since i haven't had chemo for over 2 wks at this point. it's weird, but better than having my eyes tear, which happens for about 2 days after H. i've also started having morning headaches and wasn't sure if it was storm Ida that caused it (i get barometric pressure related head stuff) or herceptin. i'm thinking herceptin. the latest is that my whole head feels swollen. i mean literally swollen - my wigs suddenly feel too tight! now that is really annoying. i dig my wigs, especially Desiree, and i don't care to do the scarf or bare head thing at work. one time, though, Desiree was itching me bad (again, i have no idea why that day and no other) and so i took her off and hung her on the coat rack over my pink winter coat, which looked quite comical. i passed the day in my little black velvet oliver twist cap. i have yet to brave going bare-headed (except in my house and backyard). i've developed a fascination for petting my freshly shaved head. velvety soft!
valerie

Sandra in GA

11-17-2009, 09:06 AM

Swallowed my last Tykerb at 7:30 this morning. Had my last Herceptin on Wednesday. Finished!!! (I hope)

I am looking forward to days where I don't have to be in close proximity to a bathroom, can eat fresh fruit, and have stamina to complete projects.

I am very thankful I was able to get into the phase II trial that included the Tykerb with the Herceptin along with the reg. chemo and radiation, especially since ALL my lymph nodes under my left were positive. I understand there are already phase III trials going on that look at Tykerb as a "stand alone" or in combination with Herceptin treatment. Time alone will tell if this combo protects me from this HER2 dragon.

Just wanted to share this very special day with those who understand.

Lien

11-27-2009, 12:47 AM

Thought I'd bump this up.

I didn't get Herceptin. My doc said that he's seeing quite a lot of SE's from it. He said some do better than others, but a few unlucky ones are really sick. He said: "They feel like old women, in stead of the 40-something they are in reality". He told me he'd rather save Herceptin for a recurrence and see how I do without it. So far so good. I'm almost 6 yrs out from diagnosis.

Jacqueline

Cal-Gal

11-27-2009, 05:35 PM

Thanks Lien for bumping up---all my recent SE's fit the Herceptin model--except the dizziness--

pmm10414

12-05-2009, 02:59 PM

I am on my 34th Herceptin treatment. Doctor want me to continue until summer 2010 to give me greatest chance of cure. I have to go sleeveless to oncology clinic. I get hot flashes within minutes to infusion starting. My face is all red. Since I started fosamax I have not had as many joint and bone aches. Maybe just timing not sure but I will take it.

PatriceH

12-05-2009, 04:51 PM

I am perplexed. I received Herceptin as part of my chemo and am now receiving treatments of herceptin alone through April or May - every 3 weeks. I don't think I've experienced anything like what is being described. Are side effects cumulative like taxotere and carboplatin?

DianneS

12-05-2009, 05:19 PM

I finished herceptin in Sept. and have noticed since stopping that I sometimes get what I call the chills. I get really cold even tho I am bundled up. Other times I get hot. It's very annoying.

Anyone else? If so what does your doctor say?

Thanks

Dianne

pmm10414

12-05-2009, 06:55 PM

I sometimes get chills but the hot flashes drive me crazy esp when I first receive my weekly treatment. I react to all chemo though so everyone is different. It seems that for me the side effects other than hot flashes (headaches, muscle and joint aches) are getting to be less with time. I can only hope that it does not get worse since I am roughly half way through my post operation year of Herceptin.

Jackie07

12-10-2009, 03:09 PM

I think one of the side effect of Herceptin is that I am so much tougher now than two years ago. (Psychologically and physically.) The side effect of Herceptin is that I've found so many warriors here that I could immulate and be inspired.
[I'm writing this to get rid of the bombardment of Tololo Ads...

pmm10414

12-10-2009, 06:19 PM

Has anyone had anemia from taking the Herceptin. My counts are still not back into the normal range 6 months after finishing taxol -- still on Herceptin weekly.

Jackie07

12-10-2009, 07:12 PM

I had quit Herceptin long time ago. During the 18 weeks of TCH, I had to have 'shots' to boost both my red blood cells (once) and white blood cells (twice) I did only 4 weekly Herceptin only infusion and had to quit because of decreased MUGA score.

simpo

12-13-2009, 12:01 AM

I have been on 3 weekly herceptin since August 2005. I have had very few side effects just the ocassional flu like symptoms on the 3rd day after treatment. In fact mostly I have felt remarkably well. However I have developed Parkinson's like symptoms, shaking, small writing, weakness in one side; I am due to have a brain scan to rule out a brain tumour, and then I will see the neurologist who will do the diagnosis. I may well have Parkinson's and these symptoms are nothing to do with herceptin, just an unlucky cooincidence. I'll keep you posted.

APRILSHER2

01-07-2010, 11:11 AM

taxol causes hot flashes so herceptin may not be the culprit

Sandra in GA

01-07-2010, 12:11 PM

I finished Herceptin and Tykerb the middle of Nov. and while most of my side effects are clearing up, my hands and feel stay cold. I always had rather warm hands and feet before this bout with bc. I don't know if Herceptin is causing this or not. I do suspect it may be the culprit.

islandgirl

01-07-2010, 07:24 PM

Hi: I am in the middle of year-long herceptin treatment. compared to taxol, there are much fewer side affects, however, as I progress, I have found myself to have increased muscle and joint achiness, lethargy, weight gain. I keep mum about it, due to the comparison to chemo, however, I am definitely not myself..

chezzy

01-26-2010, 03:26 PM

I am almost at the end of my 12 months Herceptin, feeling old and lethargic, still aching feet (taxol?) have very itchy skin on my arms and occasional diarrhea. Not sure how much of this can be blamed on Herceptin, it will be interesting to see how things change when I finish. Like Islandgirl I am definitely "not myself" but maybe that is the legacy of this whole cancer process.

islandgirl

01-26-2010, 07:17 PM

Hi Cheezy: Just got your comments regarding your herceptin side effects. It IS difficult, isn't it, to discern what is what. I'm told I have fibromyalgia now (which, frankly, I don't even like to say out loud because people seem to roll their eyes). I have been an avid gardener and though petite, have always prided myself in being able to lift lots of weight, be strong, tough. Now I seem to pick up the "Joy of Cooking" cookbook and feel sore in my thumbs and arms. I mean, how dumb is that? I wish you well.

Islandgirl

whatz

01-27-2010, 05:16 AM

Hi islandgird & chezzy,
I feel very similar to both of you. At 43 I'm getting off the couch like I'm 70 years. It takes a few tipples before I can straighten up. I didn't attribute this to Herceptin and thought this was left over from Taxol (Mine is not quite as bad as islandgirl though). I finished the Taxol first part of Dec 09 and I feel like it has gradually gotten better (very, very gradual but at least change in the right direction.)

jsouthward

03-19-2010, 09:11 AM

Diagnosed Feb. 2009
Double Mastectomy Feb 2009
Started Chemo (6 rounds) and 52 weekly Herceptin Mar. 20, 2009
Stage 2B Grade 3, 2 lymph node positive.
er+/pr+ HER2+++

I too have had thin cracking nails but am also on Arimidex so thought that was the cause. Have been taking 1800 calcium a day and Boniva once month

Sinus issues. Never have had these problems. Assumed it was residual from chemo. Never thought about Herceptin connection

Feet and leg cramps!! Again, thought it was my shoes!!

Back pain.

As of late I have round finger tip sized spots that appear. Don't itch, don't hurt just appear and then go away in a few days. No sign of a head on it like a bite. Little tiny vein like appearance inside the spot.

Eye pain and discomfort. Was told by an opthomologist that chemo can damage tear production. Put on Ristacia (sp?) for dry eyes. Does not seem to make any difference and has been over a month. Vision in my right eye has continued to worsen and my glasses were new last summer.

Fatigue. Assumed that was from the chemo and all I have been thru.

I have only 3 treatments left!!!

sandyinde

04-11-2010, 06:01 AM

I had stage 1A, mastectomy, HER2+, negative receptors, etc. I completed my chemo on Nov. 17 and am continuing Herceptin every three weeks with 1.5 hour infusions until July unless I change my mind over the side effects.

The nurses tell me to see my primary care doc, suggesting these are not related to Herceptin, but after reading above, I think they are:
. really painful knee problems
. now starting pain in lower back
. the combination makes it very painful to raise or lower myself from standing, sitting or prone positions
. all my finger nails have deteriorated [never had problems before] They break vertically and none are normal anymore
. got first in my life ingrown toenail on big toe. It got infected requiring antibiotics. By the time I got to the foot doc, the other big toe had an ingrown nail. After those were better, the first toe had another ingrown nail on the other side from the first time. It got infected and I was on Cipro before I saw the foot doc. It appeared that there was fungus under the nail by this time. I chose not to get the liver test and do the meds for fungus and now that nail is white, loose and ready to fall off.
. I am constantly hungry and am gaining weight.
. Also feel bloated and my body is bigger than the weight gain. In other words, for a 5 pound weight gain, I am up one size. When I gained that much in the past, it did not affect my dress size.
. recently I have been having numbness in my right hand upon awakening every morning. This morning I paid special attention and noticed that I was not sleeping on it in an unusual manner.
. I have itchy spots especially around the area of the mastectomy and near my underarms.
. My hair is growing back but not as fast as it used to grow.

harrie

04-11-2010, 11:59 AM

Sandi,
Right after chemo my nails turned very dark and some were loose, etc. Went to the nail salon figuring they were experienced and could offer suggestions. Right away they said it was a fungus. (sure did look like it) Contacted my onc and he said it was NOT a fungus and NOT to use anti-fungal meds, but side effects from the chemo and to put tea tree oil on it. Sure enough it cleared up.
Hair: mine grew back slowly at first and after about 6 months, took off like a week!!
Hope this helps.
Maryanne

sandyinde

04-11-2010, 04:57 PM

Thank you Harrie, I'll try to find some tea tree oil!
Sandy

PatriceH

04-11-2010, 06:37 PM

Interesting...My lower back has been hurting a few weeks...still not sure if my monthly is coming back. that is what it feels like.

I feel tired, but thought it was a remnant of all of what I've been through...Though I must say that I've been weaning off of Cymbalta that I was on for neuropathy and I'm not as tired. Hopefully neuropathy stays minimally at bay without being on it...I thought it was worth a try..

And I suppose kind of a blessing...This is the worst pollen in 12 years where I live and this is the first year it hasn't bothered me! It's funny what you trade off for!

sandyinde

04-12-2010, 06:38 AM

Thanks for your comments Patrice. I'm 69, so I don't have the monthly issue. I forgot to mention in my earlier post that I have had a drippy nose for months and sometimes get a coughing spell that I attribute to post-nasal drip. But it seems just about the same now, in pollen season, as it has been for several months.
Sandy

weety

04-12-2010, 12:04 PM

I'm 39 and I feel like I'm 89. I'm stiff and achy all the time and if I even sit in one position for longer than about 10 minutes I get all stiff when trying to get up. I'm not sure if it is the herceptin or the lack of estrogen from the chemo-pause.

I also have the eye problems. I'm not sure if it is dry eye, but I'm going to try some drops and see if that helps.

I'm tired of feeling old and fatigued. I can barely even make myself do a short session on Wii Fit because just thinking about having to lift up my legs for even something as simple as the Step Aerobics makes me tired! I sure hope this gets better as time goes on. . . but I'm scared it might be the lack of estrogen, like I mentioned above, and if so, it will probably be long-term. YUCK.

weety

04-12-2010, 12:17 PM

I forgot to add about the low bloodwork. I'm no longer anemic (4 months out) but my WBC's and platelet scores still seem to jump all over the place still. At my last herceptin treatment my WBC's were only 2.4!!! My onc said "Wow, that's like chemo levels!!!" Last week they were back up to 4.1, but that's still pretty low.

pibikay

05-02-2010, 10:09 PM

I am a care giver and I am just putting down what I have noticed.It is my wife who is undergoing chemo & herceptin.Her cheeks get puffed up and she says she cannot taste somethins.But during the tests after the first herceptin and before the second the RBC WBC count have risen.But the protein has come down as also calcium.After her second chemo last wek with herceptin for the last two days she says that it pains a lot when she walks using the walker.Her musceles nerves and joints ache.But she has got back her appetitie today
PBK

schoolteacher

05-03-2010, 02:16 PM

PBk,

Welcome to the board. The redness could be from the steroids. I had pain in my bones also.

Amelia

Nancy L

05-03-2010, 04:15 PM

I have been on Herceptin since Dec 2004 when I was diagnosed Stage IIIC. Tykerb was added in March 2009 when I was diagnosed Stage IV. I receive Herceptin every 3 weeks. Main side effects from Herceptin are runny nose, flaky nails and leg cramps.

linda b

05-03-2010, 05:10 PM

I was on Herceptin from April 2007 to May 2009, every three weeks. Side effects- weight gain, thin nails, hot flashes (menopause?). My blood counts and MUGA were normal throughout the two years

Whonoze

05-03-2010, 07:24 PM

I have been on since 2/07. Main side effects are runny nose, thin nails, bruise easily and frequest foot cramps.

sailor

05-03-2010, 08:32 PM

I was on herceptin with taxol and then herceptin by itself every 3 weeks for a year. My cancer was stage 3c. I felt no side effects from the herceptin by itself. The taxol gave me mild tingling in the fingers.

Edi

05-04-2010, 12:14 PM

Hi Lani,

first of all, i need to inform you that I’m not English native speaker, hope that you will be able to understand to what i have to say.
My mom is on the 13 cycle of herceptine, her biopsy test is her2 stage 3+ positive of the breast cancer, all the rest was clean (such as bones, lungs liver kidneys etc.), also she is diabetic, during chemo (doxorubicin 6 cycles, docetaxel 4 together with herceptine0. During this period she was fine, she finalized radiation therapy oct 2009 perfectly, after the 12 cycle of herceptine which is taking every three weeks, she got a flu and had problem with lungs, during this period, her oncolog was on holiday, and i had to direct her to another doctor who is just Chest Doctor. He is suspecting on having a spread since her lungs look in very bad condition, (i hope that I’m using the right words, i again apologies).
According to her oncolog, it is impossible to have a spread of the cancer during the cycles, i am wondering is this true or not.

She has 5 more cycles of herceptine to go, but right now, she is being treated from so called lung disease, which made her very weak.

it is worth to mention that, every time she took the herceptine, after 3-4 days she was feeling very bad, and for a week or so, she was recovering. this effects made me think to stop with herceptine, but her oncolog advised not to do so, since according to her it is a perfect medicament.

i hope and appreciate to have an opinion or information on this regard,

Thanks allot, Edi