Please post your two cents on Herceptin "side effects" real or perceived!

[MAB1943]

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]

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]

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]

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]

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.
Andi

[BonnieR]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Paris]

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