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About to start Gleevec trial


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#21 Gidget

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Posted 29 May 2008 - 08:04 AM

Lucy,
I am glad that you are having a positive reaction to the Gleevec. I would like to think it is working but I am not sure. My skin score is 19, so you may very well see results way before me. Good news is that you have made it through your first week! Hurray! Is your trial 6 months or 12? Have fun. REgards, Gidget

#22 Lucy

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Posted 11 June 2008 - 09:40 AM

Hi Gidget,
How are you doing with the Gleevec? What amount are you taking now? I am still at 1 pill a day. There is a bit of a complication and my Doctor needs approval to keep me on the drug give the sever adverse reaction, but so far no answer so I cannot be increased to 2 pills a day. This is not in my head, I am experiencing improvements even on this lower dose. Yes they are slight, but on Monday my message therapist said "what is going on you are a little softer today in your really tight spots arms and legs". She has been treating me for over a years 2 hours a week so she really knows my body. Then today my physio therapist said - gee you are a little looser today. So maybe, just maybe we are onto something?? I checked with my pharmacist here in Canada for 120 pills of the Gleevec is is $3,600.00 Canadian Dollars ouch.
Has anyone heard from Yaya and how she is doing?
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#23 Gidget

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Posted 11 June 2008 - 03:52 PM

Hi Lucy,
I pretty much am on 3 pills a day with the option of taking 4. I can only tolerate the 4 if I have absolutely nothing planned and can spend the day on the couch with no motivation to do anything. Needless to say, I am taking the 3 more often then the 4. I don't have many problems with the 3 and I can still function without a problem. My skin is alot drier since starting the Gleevec - so I am moisturiizing like crazy. I take all 3 pills at dinnertime. This way, I can sleep through alot of the side effects as I was having a problem with nausea. I am glad that the pills are working for you. It has to be such a relief to have something work! Yes, the drug is expensive. I heard $35,000 a year to take it if not on a clinical trial -- ouch is right! Good luck with everything. Regards, Gidget

#24 RobinAustin

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Posted 12 June 2008 - 03:36 AM

I'm new so don't know anything about the Gleevac trials. Good luck and let us know how they go though!!