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

[dskdrive]

DX as Stage 2, IDC 9/04
ER and PR +
Her2+++
Chemo put me in menopause at age 51
Lumpectomy (tumor 2.5 cm) Sen Node(Neg)
A/C(4)
Rads(33)
Arimidex
Begain Herceptin Aug 05 for one year. Every 3 week dose.
Had infusion reaction on loading dose. Chills. Now premedicated with Tylenol and Benadryl.

Side effects: Crusty nose to begin with, now it just runs. Very dry eyes. Nails are thin and do not grow much. Eye brows are thin on the outer edge. No hair growth much on legs or under arms. Head is OK except is grows much slower. Cannot sleep and have night sweats, again may be the arimidex. Weird dreams. Pain in neck. Just developed basil cell cancer on side of nose. Will have microsurgery for that. Joint stiffness especially in hands and feet. Swelling of hands in mornings. Urine is more yellow. May be damage from chemo. Cannot get enough air when lying down(sometimes) Capillaries in shins burst. Looks like a rash. Does this make sense - I cannot walk as fast as I used to. It could be from weight gain of 20lbs. I feel I have to think about walking but I cannot think fast enough to walk fast????

[bobbiw]

Hello all
I am finding this post very interesting as I just finished my last Taxol 2 weeks ago and am now continuing on with weekly Herceptin. I have been wondering what if any side affects I may have now so this has been helpful to me. I have been on a disability leave from work and am wondering if I should now (since I am just on Herceptin) ask my onc to release me to go back to work. However what I am finding is that when I am at home doing my regular routine of housework etc I do pretty well BUT when I really have to use my brain it just doesnt want to function. For instance my husband and I went to see our accountant yesterday and I had absolutly no attention span and felt like crying I was so frustrated....could not GET what he was saying at all. At my last onc appt I told him that I had driven up to the gas pump to get gas and could not for the life of me figure out how to pump the gas. He said that may be due more to age than anything. Ok so I agree with him SOME, however, before all of this for god's sake I knew how to pump gas! I am going to have reconstructive surgery but have to wait 3-5 months after my last Taxol treatment. So I would only by back at work for a short time as it is. Oh all of these things to consider and decide on....it's never easy is it? Any thoughts?

[Karen t]

Hi bobbi,

I've had lots of time to think about Herceptin. Just finished #90 of my weekly infusions.

One thing that "got" me in your message was how many docs attribute things to old age.... Give us a break.

Being bombarded with chemicals has to have some effect on how the body and mind function. Just how much effect there is on memory has not, thus far, been established.

Based solely on personal experience, my feeling is that my particular types of memory loss are mostly related to stress. Many times I am too stessed or preoccupied to hear information in the first place so, of course, I won't be remembering it.

The other memory problem I have is inability to remember common words. I really think this is also stress-related. When a person is under stress, it's difficult to focus on things other than whatever it is that is causing the stress. This is good: It helps save lives in the face of grave or imminent danger. For many of us, however, the stress is underlying rather than imminent and tends to creep into all daily activity (a real nuisance).

I am not ashamed to be having problems like inability to remember words. After all the things that I/you/we have gone through, we are entitled to be a little frazzled and we are entitled to a little love and understanding.

My coping mechanism is to have a sense of humor. When I cannot remember a word, I substitute the word "bucket." Don't ask me how that word ever came up or how I can ALWAYS remember it, but it works! My husband has become "smart" enough to even figure out what word I really mean when I use "bucket" in conversation, e.g., "Could you hand me the 'bucket,' I can't quite reach it?"

I hope this encourages you to hang in there and to be proud and happy that you are alive and can even be thinking of going back to work.

Love you!!!!!! ^,^

[Cathya]

Hi;

Diagnosed stage 3c in October 2004. Postmenapausal.....for a number of years...I found once my periods ended I forgot all about them so can't remember when I stopped....lol. Following lumpectomy and additional biopsys started chemo mid January 2005. 4 AC, 4 Taxol. Tested for her2 and found to be borderline so began herceptin with the last taxol treatment. Am on Arimidex. I don't know my MUGA in the beginning but am tested every two months. I have been off herceptin 3 months. Originally for low MUGA of 42 (the previous two scores were 48 but onc let me stay on....he pulled me off when the score dropped again). The last test has shown my score to now be 52 but my heart remains enlarged and so he is waiting to see if this corrects before he puts me back on. I had a wee bit of swelling to my right hand (non cancer side) and my right foot during treatments towards the end of taking herceptin. I had weak nails which are still weak, and a runny nose...which is still runny sometimes now but not as often. I have various aches and pains in my joints but that continues and could be the arimidex or the biophosphanate I just started taking (can't remember the name right now). I take it every Friday morning (1x week) and am heading into my third week. I took herceptin every three weeks.....and REALLY want to get back on it.

Cathy

[bobbiw]

Karen thanks for your reply. I just returned from my weekly treatment and broke down and cried to my wonderful onc nurses...gees what a baby huh? But it felt good to talk about it. I too deal with almost every situation with a sense of humor but sometimes I get so tired of being the strong one and I guess this is one of those times.
Thanks again.
Bobbi

[astrid]

I had my first infusion of herceptin yesterday. Currently I am on NO other medication. I was tired yesterday due to the anxiety etc. Last night I had fever and chills. Fever reached 100.5 and I called the doctor. They were not concerned unless it went above 101. The fever is gone today and I feel dizzy but that is passing also.

[astrid]

Started Hercpetin June 14th and I am on NO other drugs but Herceptin. (will start tamoxifen today). I had bad headaches on day four and again on day seven. The head aches are so bad, my vision is blurred and I feel very dizzy. Feel fine today.

[simimom]

I finished my one year of Herceptin in Feb. 06 and finished chemo in July 2005. I attribute most of my side effects to chemo, but I still have neck, shoulder, back, and hip pain. I also have "chemo brain," numbness in my feet, hand and feet cramps (sometimes very severe), stuffy nose, can't sleep (or stay asleep), constipation, headaches, weight gain (around middle), and can't seem to get my energy back -- extremely exhausted by end of the work week and end of sleeping at least one entire day on the weekend. I do consider Herceptin a miracle and feel that it's saved my life -- dx with IBC in January 2005 and now according to path report cancer free!

[julierene]

1. Joint Pain!!

2. Nose Bleeds - just drips right out sometimes 2 times a day.

3. Chest tightness - feels strange to take a deep breath

4. Sinus pressure and headaches

5. Diarrhea

6. Weight gain

7. Eyebrows won't grow back after chemo

8. Pimples - pretty consistently right after treatment
9. Very tired after treatment
10. Have trouble reading, I've really had to slow down


Stage 4, 2nd dose of 3-week Herceptin 6mg/kg, NED, 31 years old

[maryb]

tykerb is the drug that supposedly crosses blood brain barrier...I've heard of epirubicin being used as an alt. for adriamycin...take care maryb

[Vanessa]

I have been on Herceptin since June 15th of this year, along with chemo. I started them at the same time, so I don't know for sure which symptoms are related to chemo and which ones are related to Herceptin. Some of my symptoms are weight gain, water retention, sinus problems, bloody nose, tight chest, anxiety or feeling wired, troubling sleeping or sleeping too much, fatigue, sore muscles and sores in my mouth.

[atdec05]

Hi all,

I've noticed alot of women have mentioned joint pain as a side effect. I've completed 33 of 52 weekly treatments, and over the past few months have started experiencing pain in my back, legs and feet. It feels like I imagine arthritic pain would feel like. Last week after my annual visit, my doctor ordered blood work to check if this is thyroid or arthritic related.

For women who are experiencing joint pain - do you notice more creaking and crunching? I hear crunching around my knees and shins when I go up and down stairs. To me, that sounds like arthritis. I started taking glucosamine, but my blood pressure has gone up (a known side effect) so I'm thinking of switching to glutamine.

- Anna

[Cathya]

I have noticed the soft fingernails and likely have other symptoms as well as I do get arthritic pains in my hands particularly. I don't really pay much attention to these as I don't know if they're from the herceptin, arimidex or actonel. However, I was taken off herceptin for four months and have just been back on it for the past three weeks....getting my fourth weekly treatment today. I was fine during week one (following the loading dose) but after my second treatment I started having dizzy spells. These would be getting up from bed or even as I lay there and I would almost fall over. I've never had them before and had about 5 or 6 of them over a weeks period. Naturally I was concerned about brain mets and so I mentioned them to the nurse during my last treatment and she sent over the on call doctor. We decided to monitor them going forward and if they weren't resolved within more weeks I would get a brain scan. My last CT scan (taken about 4 months ago) was clear except of an old brain injury I didn't know I had. In any case I have not been dizzy this week at all and so am assuming that it was caused by the herceptin. I had a muga done last Friday but no word yet from it so it must be ok I'm thinking. Hope this helps.

Cathy

[Carolyns]

Hi All,

Below is what I know about the timeline and my experience with BC and Herceptin. I don't have all of the specific details like some of you who seem to be so well educated on the subject. This is as much as I know. Thanks for the questions and answers, my doctor always seems interested when I report back to her what I read.

32 yrs old BC - 89 Rt mastectomy - CAF for 6 months ER+PR+ stage 1

42 yrs old BC - 99 Lt mastectomy - precancer foci (sp) no further treatment stage 1 again?


46 yrs old - 04 Hysterectomy and Implant revision


49 yrs old - stage 4 - bones, chest wall, skin - started with Femara in trial 50% chance Lapatinib or Placebo (Zometa once per month) for 12 weeks. Mixed response after 3 months. Switch to Herceptin / Gemzar weekly for 3 weeks (Zometa monthly). Could not tolerate Gemzar for 3 weeks on and counts dropped too low. Switch to weekly for two weeks with a double dose of Herceptin on second week and week 3 off. Very bad headache similar to a spinal tap headache after the double dose of Herceptin. Pain was like an explosion of pain to the head when I began to move or once I stopped after moving. This happened on the day after treatment. This happened two times. Changed to 2 weekly doses of Gemzar / Herceptin and week 3 Herceptin alone. No more headaches. Received Herceptin about 14 doses so far.

So far so good. I try to drink as much as possible (6 to 8 glasses of water) for the 3 days following infusion. I think this helps me.

Carolyn

[Carol E]

Hi,
I am new to this forum, but I just wanted to say that I was on Herceptin for 5 months, first four months every week, last month every 3 weeks, dbl dose, had runny nose, legs ache, and some rib pain (actually a lot) but it really wasn't to bad,
but unfortunately it didn't help me much, now I will be going on Taxol and Avestin, could someone please tell me your experience with these chemo's, thank you very much,
Carol E

[Quilter1]

Stage I BC. I took Herceptin every week while on the Taxol chemo cycle. Once chemo was done, I was switched to every 3 weeks for a 90 minute drip. I must say I don't know if the side effects I have are from Herceptin or the Arimidex I am taking. I was started on Arimidex immediately after the Taxol cycle was finished. I had 3 mingraine headaches during the Herceptin routine. My nose was not stuffy. It is actually the opposite. It is always runny. Memory is an issue. I had more short term memory loss issues after my chemo was done. Again I can't say if it is the Herceptin or Arimidex. I also seem to have spells of insomnia that still persist. Not every night, but several times a month. I just don't sleep too well. Always in a light stage of sleep.

Hope this helps you in some way.

[Becky]

I have soft fingernails and the skin on the bottom of my feet peel quite a bit. So much so that I get pedicures every 6 weeks (and I never got pedicures before).

My nose is runny and my vision is off. I also have the "can't find the right word" syndrome (which can be from Arimidex). I am tired, especially the week I get the Herceptin. I have been on Herceptin since mid June, 2005 but will end soon (Sept 29). I also feel that my allergies have gotten worse (but this may be coincedence).

I also feel my hair doesn't grow as fast as it used to (this may be due to Arimidex as well as it is a menopausal symptom). I also get chocolate cravings for about 24 hrs but no weight gain.

Kind regards

Becky

[Mary Jo]

Hello,


I can relate to the rib pain. My left rib area often hurts. I'm done with herceptin Oct. 11th and look forward to seeing what happens to my body post herceptin. God willing my body goes back to normal. Whatever the heck normal is. Haha!

I can live with any kind of pain though from all the chemo's/herceptin to be honest. It's better than cancer.

This was a good idea for others to list their symptoms. I was happy to read I wasn't the only one with rib pain (only left side) and occasional dizzy spells.

Mary Jo

[Ora]

I started herceptin in June and take it every 3 weeks. I had a reaction to first dose - chills & fever, but seem to tolerate it now and take benedryl and tylenol with my treatment. I am also on Femara. I think I can attribute some of my ailments to herceptin and some to the chemo. My runny nose, swollen feet, and dull pressure-type headaches are probably from the herceptin. My arthritis is much worse now in my hip and back, but I gained weight with everything so I know that affects my arthritis. The hot flashes are from the Femara and I take 37.5 mg of Effexor for that and it works pretty well. Since I had chemo first, I believe my insomnia started then but I still have it and must take a Xanax and an Ambien to sleep. My mental problems and toe/foot numbness also started with the chemo. Actually, I think my brain is working a little better now. After almost a full year not being able to read a book, I've finished two in the last month. Although I must confess I thought I was going to have to describe Ambien as "bucket"! I couldn't remember the name. I have had the "air hunger" too. I thought it was because of my heart, but it mostly happened at night or when I got into a hot car - it was over 100 degrees most of the summer. I got this tip from my dog. She's a fat black lab and when she pants she will put her face up to the fan. I tried it at night and it seemed to work - the breeze helped me gulp air better. I would just turn it on when I needed it. Herceptin is my wonder drug and I can manage all of these side effects just to be able to take it.

[Carina]

I am Stage IIIa, ER/PR positive and started Herceptin with Taxol once every 3 weeks. Started to get hives and itching on the second day after receiving T + H. Thought this was due to the Taxol. Then got an anaphylactic reaction (hives, tightness in throat and chest) 10 minutes after the Herceptin was started (1 hour drip). I was pre-medicated with Dexamethasone and Benadryl but still got the reaction. I was given more Dex and Benadry and the herceptin infusion was restarted. 15 minutes into it, I got the same reaction again. They stopped the herceptin and never re-started. I have not been given any herceptin since. and have completed Taxol on Sept. 8th. However, I continue to get allergic reactions. Not sure if it is due to the Taxol, Neulasta or residual herceptin or a combination of any or all. Spent several hours at Emergency due to an allergic reaction today. Going for allergy testing on Oct. 4th.

I spoke to Roche, distributor for herceptin in Canada, and they asked a number of questions about my reaction. My onc is trying to get information on others who have experienced an anaphylactic or other severe allergic reaction while taking herceptin. Roche was intially reluctant to release the data. The Roche rep did tell me that at least one patient has died from the reaction to herceptin, but a severe reaction is rare.

I am hoping to be able to safely get back on the herceptin. Thanks for posting this thread.

Carina