Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 Greetings all, I haven't posted in awhile...I've been waiting for my zero. Just thought I'd give you an update. In February I learned I had the T315i mutation and I started the Deciphera trial Phase 1 in Michigan with Dr. Talpaz. I started with PCR 104%, dropped to 37%, even down to 0.4 but that was short lived and jumped back to 38%...latest PCR was 10% with a FISH of 50%...not very conclusive or encouraging. I had been taking 600 mg once a day and traveling weekly, then every other week and am now traveling once a month to Michigan from Minnesota. After meeting with the doctor last week he put me on twice a day doses (same 600 mg)- 300 in am and 300 in pm. He thinks the medicine is getting flushed out of my body too soon so hoping by keeping medicine levels more stable would help with my counts. The good news...I continue to feel great and my blood counts remain normal. The only side effects I have is a dry mouth- pretty minimal. I am one of about 10 people on this medication so they are really trying to figure it out with dosage, timing of dose, etc. Having patience is becoming difficult, but would really like to continue on with this medication. If Dr. Talpaz can figure this out it will be a great drug option for T315i mutation. They have Ariad as a backup for me as it will be entering Phase 2 in the coming months (hopefully). Just wanted to give you all a clinical trial update! In Hope, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Best wishes for health success. Sent from my iPhone On Jul 16, 2010, at 5:08 PM, Linscott <karenlinscott@...> wrote: Greetings all, I haven't posted in awhile...I've been waiting for my zero. Just thought I'd give you an update. In February I learned I had the T315i mutation and I started the Deciphera trial Phase 1 in Michigan with Dr. Talpaz. I started with PCR 104%, dropped to 37%, even down to 0.4 but that was short lived and jumped back to 38%...latest PCR was 10% with a FISH of 50%...not very conclusive or encouraging. I had been taking 600 mg once a day and traveling weekly, then every other week and am now traveling once a month to Michigan from Minnesota. After meeting with the doctor last week he put me on twice a day doses (same 600 mg)- 300 in am and 300 in pm. He thinks the medicine is getting flushed out of my body too soon so hoping by keeping medicine levels more stable would help with my counts. The good news...I continue to feel great and my blood counts remain normal. The only side effects I have is a dry mouth- pretty minimal. I am one of about 10 people on this medication so they are really trying to figure it out with dosage, timing of dose, etc. Having patience is becoming difficult, but would really like to continue on with this medication. If Dr. Talpaz can figure this out it will be a great drug option for T315i mutation. They have Ariad as a backup for me as it will be entering Phase 2 in the coming months (hopefully). Just wanted to give you all a clinical trial update! In Hope, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2010 Report Share Posted July 18, 2010 Thank brave for this update. Wish you a quick result and better results on the new dosage. Please keep us posted. GOD bless you. T Sent from my Verizon Wireless BlackBerry Re: [ ] Deciphera Trial Best wishes for health success. Sent from my iPhone On Jul 16, 2010, at 5:08 PM, Linscott <karenlinscott@...> wrote: Greetings all, I haven't posted in awhile...I've been waiting for my zero. Just thought I'd give you an update. In February I learned I had the T315i mutation and I started the Deciphera trial Phase 1 in Michigan with Dr. Talpaz. I started with PCR 104%, dropped to 37%, even down to 0.4 but that was short lived and jumped back to 38%...latest PCR was 10% with a FISH of 50%...not very conclusive or encouraging. I had been taking 600 mg once a day and traveling weekly, then every other week and am now traveling once a month to Michigan from Minnesota. After meeting with the doctor last week he put me on twice a day doses (same 600 mg)- 300 in am and 300 in pm. He thinks the medicine is getting flushed out of my body too soon so hoping by keeping medicine levels more stable would help with my counts. The good news...I continue to feel great and my blood counts remain normal. The only side effects I have is a dry mouth- pretty minimal. I am one of about 10 people on this medication so they are really trying to figure it out with dosage, timing of dose, etc. Having patience is becoming difficult, but would really like to continue on with this medication. If Dr. Talpaz can figure this out it will be a great drug option for T315i mutation. They have Ariad as a backup for me as it will be entering Phase 2 in the coming months (hopefully). Just wanted to give you all a clinical trial update! In Hope, Quote Link to comment Share on other sites More sharing options...
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