Been put on hold w/herceptin

[Susan]

Hi Sue:

I was on my 8th month of herceptin, and I also had my blood pressure go up. I was put on a diuritic, then put on a second blood pressure that was a ACE inhibitor. My Muga scores started to drop and I was getting short of breath. I skipped 2 cycles of herceptin, then had another MUGA, and it continued to go down. So now I'm through with herceptin, and the doctors are hoping my heart will go back to normal. I now see a cardiologist, and I haven't had herceptin since August. I am already off the one bp medication, and hopefully my blood pressure will also go back to normal. The oncologist said that there are European studies showing getting herceptin for 6 months is just as good as getting it for one year. I've always been in great shape, exercising all the time, so having this shortness of breath for me was scary. I've noticed in the last 2 weeks, it seems to be better. I'll be interested to see what happens when I have another Muga in January. But either way the oncologist at the University of Michigan says I'm done with herceptin.

Good Luck. Sue

[Sheila]

Sue
What kind of symptoms were you having besides the tightness? I also have Mitral Valve Prolapse and have been on Herceptin 3 years...

[Dianne M]

Susan
Hi, who I the onc. at U of M. that you spoke with. I am wondering whether to do chemo and herceptin or herceptin alone. I have had 2 confilicting opions. We are here at MSU. I have focal microinvasion and I am not sure what to do. I begin radiation next week for 7 weeks. so I do have time.
Thanks
Dianne

[Susan]

Hi Dianne:

I had a lumpectomy first, then AC chemo, radiation then herceptin. I also get a shot of faslodex once a month for 5 years. I see Dr. Max Wicha at U of M. He's really great!

Susan

[MJo]

Sue -- I was very shocked today at my appointment when my onc told me my muga had dropped 16 points since I began treatment. Since I've had nine months of herceptin and I was Stage 1, he was willing to stop the treatment. I told him I'd be willing to be retested and finish my year. So I am on hold for six weeks. My muga is still normal -- 54. But my four mugas have jumped from 70 to 59 to 62 to 54. The "protocol" is to stop with a 16 point decrease. I was really blindsided, because I feel pretty good. As I said in another post, I feel that any Herceptin treatment over 6 months was a gift. But i'd feel more secure if I could finish a year.

The oncologist says that NIH cancer research funding has been cut so much (he blames Iraq) that there are no objective studies in the U.S. on how much herceptin is effective. He said most of the studies are funded by pharma companies, and Genentech, for example, would like us all to take Herceptin for 2 year$.

I'm not happy about this. It was unexpected. But I know I have a lot of company on this board. MJO