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

[atdec05]

It's been interesting to read that others have experienced vision problems. I also have a runny nose, intermittent headaches, weight gain, and trouble sleeping (though I think that's due to chemopause). At 3 month echo, EF dropped from 65 to 60.

I guess I should add chemo brain to the side effects, though that seems to have started with the AC :-) My blood pressure also started climbing after about 6 weekly Herceptins. My onc. thought it was too far out from the AC to be from that, but didn't think the Herceptin could cause it. I also had a facial rash after the first few treatments, but it went away.

Stage 1, er/pr-
pre-menopausal (now in menopause)
4 DD AC (finished 1/25/06)
Feb started weekly herceptin

[Lisa1962]

I too get that "look" from the onc when I mention symptoms - YES I know that chemo symptoms are much worse - but I will be on herceptin indefinitely and these are definite QOL issues

Timeline
March 2005 - Diagnosed Stage IV age 42
April 2005 - began Herceptin, Zometa, Lupron, (every 3.5 weeks)
and Femara daily
Today - still on all of the above

Other Medication
Advair for asthma
Aciphex for reflux

Symptoms - I can't tell if the following are from being slam-dunked into menopause or from the Herceptin:
muscle pain
joint/bone pain
leg cramps and midsection cramps/pain
stiffness
memory loss - difficulty with word recall
slower though processes in general
insomnia
peeling nails
Slowwwwwww hair growth
tingly hands - shoulder/arm pain leading to hands
dry mouth
dry eyes
dry skin
headaches - worse right after infusion
hot flashes
shift in weight - all going to midsection - bloaty
I smell funny for a day or two

I'll edit if I think of others

[R.B.]

Lisa.

I know I grind on about diet and balancing the omega threes and sixes but.....

Asthma is an inflamatory related condition and some writers link excess omega six to asthma.

Dry are are definately helped by balancing the threes and sixes and taking DHA - I can vouch for that personally.

Smart Fats M Schmidt is a whole book essentially about the importance of omega three and particularly the long chain omega three DHA and its impact on brain health - mental alertness, tiredness, ADHD, MS, Bipolar, age realated degeneration..................................

DHA is fundamental to eyesight.

There are lots of links click on search above right.

If you have time and are interested you can find Smart Fats second hand on the WEB.

We have only had access to high levels of cheap concentrated omega six sources oils for the last say 100 years. Fats are fundmanental to our existance and have a role directly or indirectly in many of the bodies functions

I am passionate on the subject. At the worst it should improve your general health - even the doctors sites are officially accepting omega three is important to cardiac health, at best a few studies have suggested risk reduction factors as high as seventy percent.

As always do talk to your advisors about magor dietary changes.


RB

[Lisa1962]

RB - I've noticed your posts about the omega 3s and 6s

I've been overwhelmed with work and mommying - but will be taking an extended sick-leave beginning mid-June and will be able to focus on things like diet... my eating habits have gotten worse -frighteningly worse - since diagnosis - stress and lack of time and energy have turned me into a prepared foods eating person - which I know is bad - but I simply cannot even go to the grocery store - my husband loves junk and that's all the family has been eating

I have 5 weeks to go and some changes will happen!

[R.B.]

There are lots of sites selling fish oil, but here is one I have found recently that is very reasonable, and the product looks like its OK. Life extension are state of the art but likely more expensive.

I have only just ordered and it has not arrived yet but I do not anticipate any problems.

Here is a link for fish oil - they deliver. Your bodies take up tails off at about 2grams a day.

http://www.vitacost.com/CarlsonTheVe...ishOil-169floz

You can significantly alter your breast tissue composition in about three months according to reports in trails.

Processed food generally all has vegetable oils in it and so is high in omega six.

Smart Fats also deals with impact of DHA deficienies in young mums PND etc. as apparently the developing child grabs it even from the mothers brain, and the importance of DHA in development etc.

10/10 for coping with work children BC and a home,


I hope things look up.

RB

[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

[Mary D]

My EF is now 44%, down from a high of 67%. Can anyone out there tell me how low one can let it go before considering stopping Herceptin?
Thanks.
Mary

[tousled1]

Mary,

Most doctors stop the herceptin once your LVEF gets to 50. Then when you're off it a while your LVEF will come back up and you can continue the herceptin.

[Bev]

Mary D I thought it was 45 or a certain percent below original. Lots of people have taken breaks so that may be what you need to do. Hang in there! BB

[Bev]

Carina, Would it make sense to see an allergist to pinpoint the problem. They could tell if mouse is the problem. Herceptin is great but not if it kills you. Sorry they don't have all the answers yet for allergies. BB

[lucky4x]

I asked my onc last time I saw him and he said it depends on where you started... for eg: if you started at 58, and went to 38 this might be a concern whereas if you started at 70 and went to 40 they might take you off it right away. It fluxuates with everyone... my onc says I am off the charts and he won't even consider my mugga right now... it reads 85, 78... back up to 80 etc... he says thats probably too high for a real true reading. I have been on Hercpetin for a year.

I hope this helps... (but I would phone your onc and ask him what he/she thinks). I really think it goes up and down.

[MJo]

My nails are breaking after seven Herc. triples. I also have pain in both little fingers and my ankles and feet -- extremities. In fact, sometimes the little fingers fell like they are going to pop out of their sockets. My last exam, the nurse practicioner wrote this down. She says she tries to collect symptoms.

But here is an experience that reminded me that Herceptin is not like taking aspirin, which is how some oncology nurses and some oncs seem to treat it. I had a very busy week at work last week -- the major annual fundraising dance and silent auction for my social services agency. I'm very involved with planning. I also had Herceptin Wednesday. Usually when I have Herceptin I take it very easy for a few days -- leave work early, lie down a lot at home. This time I told myself, "OK, if Herceptin is as side effect free as I'm told, let's try full speed ahead." Ended up with cold, fever, exhaustion, coughing, etc. In fact, I felt as sick as I felt when I got chemo. Possibly my blood count went down and made me susceptible to germs. Who knows? From now on I will be very careful when I get Herceptin.

[pennyvphoto]

After starting herceptin I noticed very severe joint pain around my left hip,it was so painful I found it hard to sit or sleep..has anyone got any recommendations for pain ,can it be cured by exercise,or by exercising whilst on pain relief will I be making it a lot worse.Penny

[tousled1]

Penny,

I'm still on Herceptin and since I started Herceptin I have been plaqued with severe joint/bone pain - especially in the hip area. My last three treatments I had them reconstitute the Herceptin with saline water. What a difference - no more pain! I get my Herceptin every three weeks. You may want to ask your oncologist about this.

[pennyvphoto]

Kate

thanks for your reply,as far as I can gather they already use saline to reconstitute the herceptin - it would be great to find out what is happening with the joint/muscles,the ligaments seem to be slipping and unable to support the sacro iliac joint,causing instability and thus pain-will attend the osteopath clinic tomorrow for acupuncture which gives temporary relief.

[tousled1]

Penny,

Here is how Herceptin is usually reconstituted.

HERCEPTIN is a sterile, white to pale yellow, preservative-free lyophilized powder for intravenous (IV) administration. The nominal content of each HERCEPTIN vial is 440 mg Trastuzumab, 400 mg ,-trehalose dihydrate, 9.9 mg L-histidine HCl, 6.4 mg L-histidine, and 1.8 mg polysorbate 20, USP. Reconstitution with 20 mL of the supplied Bacteriostatic Water for Injection (BWFI), USP, containing 1.1% benzyl alcohol as a preservative, yields a multi-dose solution containing 21 mg/mL Trastuzumab, at a pH of approximately 6.

I don't know what it is, but I can tell you that since I'm having them reconstitute it with saline water only my bone/joint pain has diminished.

[tousled1]

With so many new members, I thought I'd bring this discussion up to the front again. Perhaps it can help the newcomers