I am a phase 1 protocol participant for AMN107 or as it is now called Tasigna. I started the protocol in the fall of 2004 after developing Gleevec resistance. I am blast and I am alive. This fall will be 4 years on Tasigna. Once everything stabalized I have had very few side effects and all have been mild. The worst was the rash but it wasnt that bad. I was in really bad shape by the time I started the new drug and feel fortunate to still be alive. I cant say much about pain as I was in severe pain before taking the drug, spleen about the size of a football hurts, hell my whole body hurt. Anyway, the drug saved my life and is working wonderfully for me. I get an EKG once a month to monitor my heart and all have been good, no problems. I do know that a couple of people did pass from heart failure during the trial but believe that they were very high risk for heart problems but since they were phase 1 study it had to be noted. I am not 100% positive on that but think it is correct. Good luck and my prayers are with you. Norm
On Jul 16, 3:33 pm, sassy <[EMAIL PROTECTED]> wrote: > Hi All > I haven't been paying attention to the list for a while. > I guess when things are going ok you forget to take part. > My husband Joe is the one with CML dx 1996 has gone > from hydrea, gleevec to sprycel. Now he may have a problem. Oxygen > level was 83 so he is now on oxygen > 3.5 all day. > I e-mail Dr Druker since we were in touch when Joe > went off gleevec.Joe wasn't able to go back on Gleevec > it didn't work any more, Dr Druker suggest a trial for > Bristol Meyer Squid in Dallas Tx we were lucky they took Joe. But he > wasn't able to take 140mg of Sprycel > soo he had to leave the trial. > Today he is on 5mg of Sprycel and has congestive heart > failure. > So Dr Druker suggested nilotinib ( Tasigna) any one on it?? Know > anything about it???? I would like any info. > Mary > Joe 120 on Zavie's first list --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
