Guest guest Posted March 12, 2010 Report Share Posted March 12, 2010 Claude, It seems you are not alone in thinking about getting off the drug. There are several studies underway to determine if Gleevec + low dose Interferon could result in a drug free status. A trial with Sprycel is to be added too. Yesterday, Jerry Mayfield who runs the www.newcmldrug.com site posted this message about Dr. Talpaz (who is arguably one of the very top CML docs) who is recruiting and using the word CURE. Imagine! Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?). by Jerry Mayfield Dr. Talpaz needs volunteers to participate in trials which combine TKIs with interferon and possibly other drugs with the goal of stopping all drugs and remaining CML free (Can you spell " CURE " ?). He says that the present trials are proceeding very slowly due a lack of trial participants. He is very optimistic that this approach might bring a cure to many patients and is planing additional combination trials for the near future. Right now he is doing a Gleevec/Pegulated Interferon trial and plans another using Sprycel in the near future. He also has other combinations in mind including drugs that kill CML stem cells. If you are interested, please contact me and I will give you contact information. Regards, Jerry This is clearly exciting stuff though it will only be an option for the small percentage of patients who achieve PCRU. But it starts a path and perhaps it points the way for the rest of us longer term. I am not a PCRU patient, indeed after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this approach but I would if I could. I was dx'd before Gleevec so I was on IFN and Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to try it again, I know I would for the opportunity to get off all meds. I would only do so with a CML specialist and preferably in the confines of a trial. Not only would I be thrilled to be off all medication, my bank account would be better off too. I pay a minimum of $500 per month as a co-pay in Canada. Contact Jerry or Dr. Talpaz to get more information. Best to you, dx 11/98 > > I have been taken gleevec since October 2007 and I am remission. I believe the bone marrow can reconstruct itself. I asked the doctor to see if I can stop taken Gleevec for awhile to see if my bone marrow is functioning normal again. He says I have to take Gleevec for the rest of my life. I know what is going to happen to my body eventually, I am going to die from all the toxic effects of Gleevec. I am thinking of stopping the medication for sometime, because the fatigue is too much for me. Has anyone of you thought about this, or has someone tried to stop? Your thoughts are appreciated, God bless you all. > Quote Link to comment Share on other sites More sharing options...
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