Hello Millie Let me give you a brief overview- - I am 57 and had CML 6 years. I was on 400 mg gleevec for 5 of those years. I have been PCRU 5 years. I had to switch to tasigna because of side effects on gleevec. I have been on 400 mg tasigna since Dec. 27. They gave me a good physical, did an EKG before the drug and 7, 14, and 28 days after at those intervals. There is a risk for QT prolongation to occur. I had none. They started me on it at 800 mg. and I had to go off at 2 weeks. I had an entire body rash, extreme water retention, joint pain, and many other side effects but not the heart ones. THey gave me a 5 day break and then began me again at 400. I have absolutely no side effects and feel normal once again. I Had some real anxiety about the drug. My oncologist kept a close eye, CBC and CMP every two weeks on it. Now I am the regular 12 week visitor to the office and all my tests are normal - a FIRST since diagnosis. I have a friend Joel who was on the trial in the beginning.. He had some side effects for the first 3-4 weeks and then all subsided - on 800 mg. He is now taking 600 mg twice a day My point is this: after the initial reactions, tasigna seems to nestle itself in and get comfortable with its new host and then settles down. I have some information on tasigna if you would like to see it or you can find it on the Novartis site. I get it mail order, and it costs my insurance about the same as gleevec. I believe you are right to be cautious as there were SOME on the trial that responded with heart issues, but it was a small number. I would be happy to share any information I have with you if you write me privately that you would like it.
YOu say gleevec isn't working as it should. Do you have mutations? Be well and good luck. Barb in AZ. On Jun 13, 5:17 pm, "C.M. Houtz" <[EMAIL PROTECTED]> wrote: > Hi Everyone, > > I haven't been on here in quite a while. I am suppose to be starting a new > drug tomorrow. My Oncologist took me off of the Gleevec, but I'm readying > the material on the new drug and it scares me a lot. I have a pace maker and > haven't had an EKG since March. I have had irregular heart beats in the > past, so I'm reading that perhaps this isn't a good time to start it. Think > I'll just take the Gleevec until I can talk to both my Oncologist and my > Cardiologist. I'm scheduled to have an E.K.G. next Thurs. and that's when I > will start Tasigna....the day after. Some times you just have to go with > your gut feeling. It also says that I have to have the EKG's every 7 days. > > My question is.....how many of you are on this new drug? I know it is made > by the same people that make Gleevec, but also know that it's very new and am > just curious to see if any of you are on it. > > I would rather be cautious then stupid at this point. The Gleevec isn't > working like it should, so I need to change. They had me on Sprycel, but it > caused some muscle problems and so he took me off of it. > > Hope to hear from you and I value your opinions. > Millie --~--~---------~--~----~------------~-------~--~----~ [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
