Thread: poll/Herceptin
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Old 12-03-2004, 08:56 PM   #17
SusanAnne
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Hi Kristen,

Yes I was in a phase III trial. I was luckily put in the best arm, 4x AC then 12x weekly taxol with herceptin then 40x weekly herceptin alone.

I had very few problems. No runny nose or aches attributed to the herceptin. Tamoxifen was the culprit to cause my aches and pains. I've since switched to Arimidex.

For me the biggest issue was my ejection fraction. My MUGA score started off low normal (55) before any chemo. After AC it fell to 54. After taxol it fell to 51. Does everyone know that if it falls below 50 they will boot you out of the trial? I was very concerned so I had them refer me to a cardiologist. He put me on Accupril and Coreg (the trial had to approve the drugs I was prescribed). I credit these drugs for enabling me to finish out the trial. My EF remained at 51 till the end. Last month I had my last MUGA after being off herceptin for 3 months and it is back to 55 but remember, I'm still on the meds. The cardiologist wants me to stay on them for a year, that's how long they say it takes for the heart to bounce back from herceptin. Then he'll wean me off.

I must say that my hair definitely grew in much better when the herceptin ended. My nails are still pretty crappy though. As far as follow-up goes, I think everyone will be different depending upon your oncologist's routine. Mine does not do scans unless symptoms present themselves. I'm on a three month checkup schedule for the first year or two at which he draws blood for CA 27.29 tumor markers. I do have a surgeon though who will send me for a bone scan at the 2 yr. mark. I am going to see him next week because the other day I felt some lumpiness on my reconstructed side (I had a TRAM flap). I saw my plastic surgeon today and he wasn't overly concerned but said I should have it checked out. Maybe I will be having a scan afterall.

I thought most of the vaccine trials were for those who had never had herceptin. I was most interested in laptanib trials in case I recurred. Have they closed them down? I had heard they weren't going well. Anyway, I am more than happy to answer any specific questions anyone may have. We're all in this together.

Take care,
Susan
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