Here's a big ? for those already off Herceptin--what did you notice ?brain improved?

[Lani]

Are you still on tamoxifen or AIs? are you newly postmenopausal (within past 2-3 years) Were you forgetful, having difficulty finding words, finding your lists of things you didn't want to forget, etc while on Herceptin--any improvement once finished? How long after chemo did you start Herceptin (ie how many of your symptoms were likely due to the chemo and not the Herceptin) Also those who had to stop herceptin due to problems with MUGAs--what symptoms improved after the herceptin was stopped?

Did your dry nose, stomach aching, shortness of breath, breaking nails, rib or hip pains, dry eyes, diarrhea or other symptoms experienced while on Herceptin improve?

Now that many are hitting their one year mark perhaps they can advise others what may be in store?

This has in reality been one big experiment (adjuvant Herceptin) and noone has the answers. The drug companies have little motivation to look into this--they are even slow at doing their post-marketing surveillance ie, looking into what problems people are having while ON herceptin and reporting it.

I am sure many are curious. Well???????????

[hutchibk]

1. I am on Aromasin (did Tamoxifen for a year and was switched to Arimadex for 3 months, then was diagnosed with reccurance... doc took me off AI's and I went immediately into carbo/taxol/herceptin. About 3 months in, he put me on Aromasin). Finished carbo/taxol in Jan. 06 and now am on Herceptin only.

2. 6 treatments of TAC in '04 put me into early menopause.

3. Forgetfulness, difficulty concentrating & finding words seemed to clear up for the most part within a month of being off of chemo. Memorywise, nothing I can complain about too much on Herceptin only. Heart is still strong, too - after 8 months on Herceptin (4 of those combined with chemo).

4. Did your dry nose, stomach aching, shortness of breath, breaking nails, rib or hip pains, dry eyes, diarrhea or other symptoms experienced while on Herceptin improve?
Those symptoms/side effects were what I experienced with chemo, and have definitely improved since I finished chemo. Herceptin by itself doesn't seem to cause any of those for me (dry nose hung on for a while, but is now much better, also - occasional minor rib flanges, but those started on TAC and have continued ever since).

4. I will reach a year on Herceptin in September. So far I feel lucky that it has been a very smooth ride.

5. I definitely attribute most of my persistent side effects (recurrent UTIs, occasional dry nose, minor memory issues, etc.) to lack of estrogen and drying soft tissue that is so dependent on estrogen.

6. The most annoying left over side-effect that might also be related to Herceptin is the stiffness and numbness in my feet, stiff/painful knees, and upon waking - stiffness and pain in the knuckles/fingers of both hands.

[RhondaH]

I TOO want to know (being that I have my last Herceptin on 8/10/06)? Because as you say, this is a BIG experiment. I'll be sure to post MY results once done. Thanks for bringing this up Lani.

Rhonda