Norm Thanks for your input.I can't belive I slept thru this drug. Joe is a ww2 vet. was doing well on gleevec he was doing so good he decided to go off. He was fine for 3 months.Then gleevec didn't work.So I was able to get him an appt. with Dr Talpaz in Texas.The long and short of is he on 5mg of Sprycel now with the heart problems don't really know what will happen. I'm so glad you are alive and doing ok with this drug. Thanks again & God Bless Mary
On Jul 17, 8:39 am, Norm <[EMAIL PROTECTED]> wrote: > 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- Hide quoted text - > > - Show quoted text - --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
