Please post your two cents on Herceptin "side effects" real or perceived! - Page 27

09-16-2010, 11:19 PM

Thank you for replying. I am very anxious about it all

AIMhiGh · 09-17-2010, 01:40 PM

Pamela, If your March-May chemo involved Adriamycin I think the damage is much harder to correct than if it was caused by Herceptin. Perhaps there's a way to better trace it to the cause? If it was the Herceptin, I think your outlook from a cardiac perspective is quite good. Good luck!

pibikay · 09-25-2010, 07:01 AM

Is the phenomenon of the eyes going red during hreceptin infusion a common side effect.
My wife had her 9th and (last) herceptin 0n the 21st and she is having swinging moods and joint pains.The Onc attributes to Herceptin or earlier Chemo.
She will be on Tykerb from Oct 20th

Jackie07 · 09-25-2010, 04:55 PM

PBK,

Read posting number 511, 512, 514 and 518 on this thread. Looks like several members have experienced the same thing and it stops once the treatment ends.

Carol.hope · 09-27-2010, 06:53 PM

Pamela, I took CoQ10, Hawthorn, and a few others, at the direction of my Naturopath. Got my Ejection Fraction back up in short order - I think 2 months (it had gone down to 35%). I'd recommend looking for a holistic MD or Naturopath to support you. The cardiologists were not into these supplements, but they worked.

pibikay · 11-15-2010, 07:03 AM

After my wife started Tykerb with Xeloda she started diaorreah.The One prescribed immodium and it works. He wants her to taper it off.But now she has developed itchy rashes.We cintacted the Onc over the phone and he has promised to mail a prescription for a tablet to be taken twice daily to stop the itchy feeling.This was 5 mts ago.Will follow up when the prescription comes.
BTW lamotil did not work for my wife.Immodium one Cap thrice a day worked and it is now twicw a day.

Mary L · 11-15-2010, 07:39 AM

I was on herceptin every other week for 5 years only taking breaks when my muga showed problems. I have the hot flashes all the time, joint pain, especially in my knees, my hair was very thick and now is thin and limp. My chemo fog is really bad and I forget what I'm saying in the middle of a sentence. I suffer from post nasal drip/cough everyday of my life. My nails are much improved. I suffer from fatigue and take Ginsana for that but I really don't have much energy. I gained 10 lbs but thankfully I was slim when I got my cancer. I have not lost it as I always am hungry between meals and snack. I have very bad neuropathy in both hands and feet. I also am getting cold sores on my lips. Never had that problem before. I had 5 years of red, dry eyes. I always looked like I had pinkeye. That went away after I stopped herceptin. I have been off herceptin for 3 years and I still have most of the side afftects. If I had not received the herceptin, I wouldn't be hear so I guess I can live with them. Mary L

Mary L · 11-15-2010, 08:12 AM

I forgot to mention that I had to receive herceptin over 2 hours as I had a bad reaction from it when they gave it over 30 minutes. I couldn't breath and I felt like I had an elephant sitting on my chest. I also didn't mention that I still have a red face which I can't stand. It comes and goes but it never fully goes away.

Delaney · 11-15-2010, 12:28 PM

MaryL, did you try taking an anti histamine for the red face, also aveeno cream is soothing. I had hot red face after taxotere and the oncologist told me to try an anti histamine, it worked. You have probably tried everything so sorry I cant be of more help. The most important thing is that you are NED, I know you would agree with that!

Mary L · 11-15-2010, 01:00 PM

Hi, yes I had and have all of the side effects that the other women were talking about. It was so interesting to read their stories as I thought I had these problems because I was on Herceptin for 5 years but alot of them were only on it for 1 year or less. My worst probllem is fatigue which no matter how long I sleep or even taking Ginsing{my onc told me to try it as they didi a study of chemo fatigue and this helped} but it really doesn't help. Also, I have neuropathy in both hands and feet. Then of course I have a great case of "chemo fog". I am happy to be alive and cancer free and I can and do deal with my side effects. Hope you are doing well and Herceptin is a wonderful drug and has saved many lives. Mary L

11-15-2010, 08:34 PM

Nancy- I am just diagnosed and trying to learn all I can. Can you explain to me why you are on Herceptin now if you were diagnosed so long ago? Also, have you had any mets since your initial treatment ended? Since you have several year experience with this I will take any information/advise you have to offer. pennington.tracy@menlolog.com. Thank you!

Mary L · 11-16-2010, 07:27 AM

I have been off it for 3 years last month.

pibikay · 11-20-2010, 02:49 AM

We tried reducing immodium to one.But it did not work She is on two immodiums now.She developed rashes itchy ones too on her arms.The tab given to her worked. She was asked to take 2 Capsules a day.But after day 1 of the capsules the rashes went away,She is now having stomach ache with gas formation

Iwannagrowold · 11-24-2010, 08:30 AM

Hello,

I posted on another thread. New to this website.

I have just perused the last 4 years of reported herceptin side effects... very useful!!!

I was diagnosed January 2010, 8mm, her2+++, er-,pr-, lymph node neg,
Had 6 rounds of TCH (Feb thru June), during this time weekly herceptin, then triple dose herceptin every 3 weeks thereafter. (until Feb 2011)

I have experienced intermittant episodes of tachycardia, self terminating, not caught on holter monitor, clearly herceptin related. We returned to weekly herceptin.

Currently, during the infusions, I experience subtle but real (at least in my crazy head) pleuritic chest discomfort that radiates to my throat. I also am lightheaded nearing the end and after infusion.

What I haven't seen mentioned, correct me if I am wrong, is the possibility that our side effects may be related to the stabilizers and preservatives used to reconstitute the herceptin, ie polyvinyl chloride, and not necessarily the herceptin itself. Not that this is any more comforting.

I know there is no way to really know the answer to this question, though I wonder if some of us are able to "process" (via hepatic or renal clearance) these chemicals more efficiently than others and thus the differences in side effects. (As with any drug reaction)

What I'm trying to say is its not all in our heads!!

karenl · 02-12-2011, 02:12 PM

So glad that you started this post!!!! I had invasive ductul carcinoma and ductual cacrinoma in situ. 2.5cm grade 3 invasive and DCIS grade 2, 0/4 nodes. er+,pr+ her 2.5. I had a mastectomy On January 25, 2010 and started carboplatin taxatere and herceptin starting on March 2, 2010 and concluding the CT on June 1, 2011 and herception on December 27th. (terminited myself 3 sessions early). I began to feel the treatments the second round of chemo, the twitching of the eyes, the numbness and tingeling in the hands and feet, dry skin, vision problems, bone and muscle pain, water retention. thin cracking nails, thinning of skin ealsiy bled and also my breathing felt shallow. My memory was effected and I used different words then what I intended. My hip kept on dislocating during treatment. It was all blamed on the chemo!! I also had abdominal swelling. I took alpha liphoic acid and B-6 for the nerve damage and water pills for the water retention. No one ever address the concern that from my hips down my legs felt so heavy and hurt! At 51 yrs. I felt like I was 90 years old. I had to take adavin to sleep at night. I Kept exercising was running, walking and finally switched to yoga as my running was interrupted by my pain and hip displacement. I had contacted some virus around Christmas and could not make my next scheduled appt. due to the virus, then I missed the next one and started feeling the pain going away, my vision being restored and my hip not going out!!! I figured it was from the herception, as I was already 6 months past the chemo. I am so glad that I am off of the drug!!! Now I am hesitant about starting the ferma, I just want to give my body a break. They can reduce breastcncer, but then you damage your body in other ways!! I don't know what is better! I have to sit with my new onc and at this point discuss my recurrance rate with out the Ferna after I do a heart scan and bone density test.

Mary L · 02-12-2011, 03:46 PM

Karen, you are alive. I too had alot of side effects but whrn you look at the whole picture, you realize if it were not for the Herceptin, we may not be here to complain about the side effects. I am so thankful for Herceptin. It saved my life. I was given a 28% chance to survive 2 years and I am still her NED for over 7 years. I wish you the best. Mary L

Jackie07 · 02-12-2011, 04:35 PM

Karen,

I had experienced the 'heavy legs' after getting the booster shots to increase the white blood cell counts during chemo.

My tumor was only tested 5% ER +, but I've been given Tamoxifen. There's new study showing it's protective even after menopause, and I think that's why my oncologist sent me a note last year to continue with Tamoxifen.

As you have mentioned, those side effects stopped when you discontinued your treatment. I would suggest that you give femera or other drug of the same class a try. You can always stop it when experiencing unbearable side effects.

karenl · 02-12-2011, 10:59 PM

Thanks Jackie and Mary for your replys. I just wrote to contribute about my side effects. I know I should be grateful, but I am still trying to feel normal again after all of the treatment. I am also second guessing my treatment for me because they were able to get all of the tumor with clear margins and I had 0 nodes. It just seems like overkill and the treatment is so toxic.

MCS · 02-12-2011, 11:45 PM

well. it's been a long time for me from herceptin. However, all the side effects you described, I had with Taxol, not herceptin.
I took CoQ10 for the heart. I don't run but I took a walk every morning around the block.
I used Sarna skin cream for the dry skin. Used Biotene for dry mouth too.
For the numbness and twitch on feet, I just massaged and massaged. It was while drivng, I stopped and massaged.
The aches, they don't go away with anything. I took vicodent and it did not work at all. actually ibuprofen worked better sometimes. i ended up in bed early evening, usually during the day I would not get it
Genetically, I have never slept well so I was taking ambien before bc. But i was placed on ativan due to anxiety. ativan will not help you to sleep-ask your doc to give you someting to sleep
yoga will be good for you. i do it now and it's so good for pain, flexibility and just your mind.
try meditating-I know it's hard with all going on. put your favorite music- I like the theme from the movie out of africa a lot-then close the door and breathe yoga breath, give yourself 20minutes a day.
look at funny movies
Hope it helps a bit
XO
maria

I'

sarah · 02-13-2011, 12:43 AM

Hello Karen,
we are all nodding out heads reading your post and have suffered many of the side effects but remember the best one is LIFE and we are all here thanks to these poisonous drugs.
Most of my worst side effects were due to the Taxol. I certainly couldn't have run or do other stuff while on it and I'm not sure one should put one's body through so much when you are "recovering" from heavy drugs - I suspect it can further weaken you but....... not a doctor so....
Femara, yes it's nasty but I would not have wanted to risk not taking it. most ot the side effects are manageable but you do need to check if it's eating your bones. It started eating mine and I had to take Clastoban to build back up my bones and they did improve.
Reading was my best distraction.
Be happy every day and if you find your moods are swinging wildly (not necessarily sad but angry and impatient or moody) consider taking a light anti-depressive, I know it helped me when the Femara (I think it was the Femara) made me moody.
Now off everything and feeling good so far.
take care