For Justwannabe
 

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

Dreading Herceptin tomorrow
 

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

westwon
 

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

Please post your two cents worth on Herceptin "side effects"
 

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.

Herceptin Side Effects
 

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.

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

Is Tykerb as terrible as it is reported by some??? Please reply from anyone on Tykerb
 

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

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!

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.

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.!!!!

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!

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?

Please post your two cents on Herceptin "side effects"
 

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.

Reaction to herceptin
 

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

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.

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!

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.

My two cents:
 

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!!

Heartburn...terrible
 

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

side effects
 

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

Herceptin reaction
 

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
 

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!

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. ??

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.

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

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????

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.

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.

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.

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

Thyroid Difficulties
 

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...

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.

Herceptin questions
 

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

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

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

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.

Herceptin and eye issues
 

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

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.

Herceptin side effects
 

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

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