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

[Ronnie]

Lien- thanks for your insight and your kind words re: mom. She is my inspiration. Best-R

[AIMhiGh]

My 17th (last?) Herceptin teatment (1ce/3wks) was 6wks ago. It followed 8 dose-dense rounds of A/C-T each followed by Neulasta shots. The 1st treatment was concurrent with IV Reclast and caused 104+ fever and full-out flu symptoms. Radiation started 8wks later. All was interspersed with staggered mastectomies, an oophorectomy, reconstructive procedures & Femara so I haven't been able to make sense of what's caused what. With about 3 wks since the last Herceptin, I thought I'd share what's changed.
1. My nails are already noticeably stronger.
2. Mental clarity is definately improving.
3. Despite great angst about stopping treatment, my energy level has increased.
4. The above may be due to a 7% EF increase at 4wks post.
5. My eyes have stopped thier constant watering & stinging.
6. My nose has stopped that perpetual, tiny water-spicket drip.
7. The invisible but intensely itchy arm rashes have disappeared.
8. I think my eyelashes and hair (both of which regrew but not-quite-right) are getting stronger.
9. The bones in my feet no longer ache.
All that said, had it not been for the compromised EF I'd be doing my 19th treatment tomorrow, but I thought this might prove helpful to those evaluating their options and looking for causes to their SEs.
Good luck to all of you!

[Jackie07]

Sorry for what you've been going through.

I had to stop my Herceptin treatment in January, 2008 because of reduced heart function. We did another MUGA after 4, 5 weeks, but the number had further declined. (I have 'Mitral Valve Prolapse' and had had a full-dose of chemo back in 2003.) There are a couple of members on the board who're able to improve their heart function by exercising and taking certain medication.

Let's hope they will see your post and reply soon. You can also use the 'Search' function to check on previous postings on the subject.

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

[pibikay]

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.

[Jackie07]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[NanaJoni]

I'm in my 9th month of Herceptin - Herceptin only since August 2010. I have to say I don't have much in the way of side effects - but a few annoying things: my nails have gotten extremely thin and they peel and split. I keep a nail strengthener on them and get regular manicures to keep the cuticles neat (it's also a mood booster to get pampered). Since I stopped chemo and went to Herceptin only, my eyelashes have fallen out completely 3 times. Can't do much about that but they come back nice and thick so I won't complain. I usually feel a little tired during the week after tx but napping fixes that nicely. I have started having some really serious problems with gastro/diarrhea though. This started about two months ago. Of course, my onc says it's not the Herceptin but the only other drug I'm on is warfarin which could be part of the problem. The nurse practitioner in my onc's office was very helpful. She thinks my system (stomach, intestines, colon) have just been bombarded by too many chemicals, antiobiotics and other drugs which resulted in all the good and bad bacteria have been whacked. So she put me on a probiotic, an anti-spasmodic and a special diet. I also had a colonoscopy which was good (I don't have to have another one of those for 8 yrs). So not sure what's up - just trying to deal with each thing as it comes up. I really feel better in many ways than I did a year ago before the bc. I've been feeling some dread and sadness as the one-year anniversary of finding a lump and getting a cancer diagnosis is approaching. Don't know whether I'll hide in bed on those two days in March or maybe do a total spa day or lunch with friends. I'm trying to plan on doing the more upbeat positive activities but sometimes things just crash without warning. Just taking it a day at a time.

[kklouisiana]

The only side effect I have may not be femara or herceptin but my ears drain constantly. Periodically, like tonight for instance, I woke up and my left ear is bleeding bright red blood. Could this be a side effect?

[NanaJoni]

KK - I've never heard of any bleeding being a side effect of Herceptin. I would advise you to call your oncologist ASAP and report this to him. The only side effects I have from Herceptin are some mild fatigue in the first few days after a treatment and a constantly runny nose. I take Zyrtec for the nose dripping and it ususally takes care of it.

[kklouisiana]

Thanks, i was hoping it was a side effect, but have an appt with ENT tomorrow morning. Other than this, I have had excellent blood tests during chemo and herceptin and no side effects.

[kklouisiana]

my diagnosis was April 1, 2010. i haven't even considered it an anniversary. i do have very thin and ridged nails on my fingers, though. my nails used to be very strong and grew way too fast. i take pro-biotics and they are great!! Glad you are taking them, too.