Richard, Thank you for this information. It never ceases to astonish me what a broad range of side effects that people experience on Gleevec. I was on 600 mg of Gleevec for nearly 4 years with no side effects whatsoever at least none that my body notified me of. The same was true of Sprycel, but I was only on that for a couple of months. I was beginning to think that there was something wrong with me. In fact I felt that way when I was first diagnosed with CML. My body told me nothing and then I go in for a regular exam and my doc tells me my spleen has migrated down to my groin! What a shock that was. And now I am reluctant to believe anything my body tells me, which is still not much.
I am now 9 months out from a SCT. Other than chronic tiredness everything has gone extremely well. I did pick up a mild case of conjunctivitis a while back, but I went about my business not believing that either. If I can't trust my body to tell me when something is wrong, who can I trust?! After 9 months of recovery, I am ready for the real world again. I am back on payroll next week and am looking forward to new challenges. Doug 56 Dx CML 11/2003 600 mg Gleevec 11/2003-1/2007 70 mg Sprycel 1/2007-4/2007 MUD 6/19/2007 ?-----Original Message----- ?From: [email protected] [mailto:[EMAIL PROTECTED] On ?Behalf Of Richard H ?Sent: Sunday, March 23, 2008 1:45 PM ?To: CMLHope ?Subject: [CMLHope] Re: PAIN ? ? ?You are looking for someone brave enough to thake an extended Gleevec ?Vacation and now you have found him. ? ?In Dec. 2006, Gleevec helped put me in Iron Deficient Anemia and 6 ?months of transfusions for about every 3 weeks. Procrit is not ?approved by insurance companies in Missouri unless you are intravenous ?Chemo. I kept telling my ONC (he was a researcher at a teaching ?hospital when he doing his cancer specialest degree) that I thought is ?must be the Gleevec and I was willing to be his experiment for a ?Gleevec Vacation. On May 23, 2007 after several consults with Dr. K ?at Univ of Michigan, he finally agreed that was our best option to see ?if it stopped the anemia. That is the last transfusion I have had. ?After being closely monitered, in Nov. my QT-PCR indicated a rise in ?Phillies but we elected to redue the test, My ONC did give me a chose ?of how long 1 or 2 months, I chose 2 months to his suprise, but ?expained that I felt we might get better results than inbetween ?holidays because of the excitement of holidays and the people involved ?wanting to catch a few days of family time. In Jan. 2007 the QT-PCR ?had raised enough to end the test and I went back on Gleevec. In Feb. ?the lab punched in the old pcr so the results of it was negative but ?both Dr and I knew that wasn't accurate enough to satisfy either of us ?so Tues. I will repeat the QT-PCR (with a new set of #'s to verify ?that they are requesting the correct test). Now having said all that ?here is the my findings ouside of stopping the Anemia for now. ? ?Much of the Gleevec fog disappeared, Aches, Pain, Joint tightnes ?(swollen) disappeared, leg adema ( always about 1) was reduced. Water ?weight decreased at least 25% but still under 50%, swelling around the ?eyes decreased, ability to see clearly inproved, watery eyes ?disappeared, of course nasal drainage decreased and sinus pressure ?above the eyes decreased. After 2 months back on Gleevec all these ?symtoms have returned to some degree and my weight is almost 5 lbs ?over my highest weight before the Vacation and I did decrease about 5 ?lbs during the vacation (a gain of 10 lbs in 2 months. Sorry to be so ?long, but I know without the background it leaves many of us with ?unanswered questions. Wishing all a happy blest holiday. ? ?Richard H. ?dxd 2/03 ?Gleevec 3/03 ?PCR-U 11/03 ?Q-PCR-U 11/04 ?QT-PCR .0112 11/06 ?QT-PCR .0112 5/07 ?QT-PCR .072 11/07 ?PCRU 2/08 ? ? --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
