GIST Support WikiLinda C
Sat, 29 Sep 2007
I was on Gleevec then Sutent with progression for 14 months, and was told I had about 2 years. I go to MSKCC and was switched to Nexavar and Rapamune, and the tumors are almost dead! Next week I go for a liver embolization to destroy and remaining residue. Tell your father never to give up, just find the right doctor, and hospital, and don't give up until you do!
11 Oct 2007
Hi Linda, May I get your email address so I can ask a couple questions directly. My dad has been on Nexavar for 3 weeks now.
Thanks again Carrie P
Hello Carrie,
I'm being treated at MSKCC in New York. Dr. Maki is my oncologist, he's great! He made sure I could get the medication. I'm taking Nexavar with Rapamune, and almost all the tumors are dead! I go for a liver embolization Oct 5th at MSKCC. I've tolerated Nexavar very well, but the first month I had blisters on my feet. Linda
16 Nov 2007
Subject: Re: Nexavar and Rapamune
Hi, I've been taking Nexavar and Rapamune for 8 months. I take 1 200mg in the morning and 1 200mg in the evening I take Rapamune 1 x a day 2 tablets at the same time 1 mg each, and Acyclovir 400 mg 2 x a day. Just had an embolization at MSKCC, I'll find out on Nov 20th, how I did.
Linda C
18 Nov 2007
Subject: Re: Nexavar and Rapamune
Thanks for your "good luck". I'll let you know how I make out on Nov 20th, when I get a scan and the results of my embolization.
I started Nexavar on April 10th, 07, 2 tablets 2 x a day 200mg. After 13 days the blisters on my feet were a big problem, I was bedridden and couldn't walk for a few days, so I stopped the Nexavar for 13 days to allow them to heal, (which took a long time).When I resumed the Nexavar Dr. Maki reduced the dose to 1 tablet 2 x a day 200mg. and really haven't had and problems since with the blisters. The tumors became more stable, but some still progressed "mixed response".
Rapamune and Acyclovir were added in August, and that's when a much better response was seen. I haven't had any side affects with either of them. Overall, after the blisters I feel pretty good.
I also experienced periods of high blood pressure which were relieved by taking Lotril for a few days. But that too has subsided.
Just a little note....I bought a small tool ( the kind they use at the nail salons) at Sears. Its cordless and rechargeable. I use the small round sanding tool to smooth out the dried blisters, and it worked WONDERS! and helped the blisters heal faster, and made my feet smooth as a baby's ... Ha Ha
Linda Chuyko