Hi Sean, First a big
*YAHOOO!!! YIPPEEE* *Number 1309 in the Zero Club* *Zavie* Hi Sean, Attaining PCRU is definitely not worth it. This is the opinion of the CML experts. Maintaining a 3 log reduction over time guarantees that you will never relapse with your CML. Maintaining a 2 log reduction over a long time (2 years) has about the same effect. It is beyond me why some doctors will increase a patient's dose or even switch drugs to achieve PCRU. And this usually at the expense of their QOL. You might even consider entering Dr. Talpaz's trial to see if you can eventually go off and stay off all meds. It is very exciting. You don't have to be at PCRU to participate. I would write him, explain your history and ask him if you would qualify for the trial. Zavie *Zavie Miller (age 71)* *67 Shoreham Avenue* *Ottawa, Canada, K2G 3X3* *dxd AUG/99* *INF OCT/99 to FEB/00, CHF* *No meds FEB/00 to JAN/01* *Gleevec since MAR/27/01 (400 mg)* *CCR SEP/01. #102 in Zero Club* *2.8 log reduction Sep/05* *3.0 log reduction Jan/06* *2.9 log reduction Feb/07* *3.6 log reduction Apr/08* *3.6 log reduction Sep/08* *3.7 log reduction Jan/09* *3.8 log reduction May/09* *3.8 log reduction Aug/09* *4.0 log reduction Dec/09* *e-mail: [email protected]* *Tel: 613-726-1117* *Fax: 613-482-4801* *Cell: 613-282-0204* *Yahoo ID: zaviem* *Tel in FL: 561-429-5507* On Mon, Mar 15, 2010 at 1:03 PM, Sean <[email protected]> wrote: > Hello all, > > Been a long long time since I last wrote to this group. Thought I'd > check in. I was dxd in Oct 2002 when I was 21 years old. My WBC at > time of diagnosis was 498,000. Since that time I've been on Gleevec > for the first 6.5 years or so (between 400 - 800mg but mostly the > latter), and I've been on Sprycel for the past year, first at 140mg > and now at 170mg. I'm young, so I suppose that helps me tolerate the > high doses, as I had virtually no problems on Gleevec for all those > years other than minor fluid retention in the ankles. I've been CCR > for a long time but guess I forgot to tell Zavie about that :) > > My PCR tests have been hovering between 0.08% (8x10^-4)and lower, the > most recent at 0.0012% (1.2x10^-5). The switch to Sprycel was an > effort to get to PCRU, but now I've got pleural effusion. It's not > particularly noticeable, but chest x-ray confirmed it along with > increased shortness of breath climbing stairs, etc. Doc said to switch > to 170mg 6 days/week instead of 7. If this doesn't work he may want to > switch me to nilotinib, but that doesn't sound like a fun drug to me. > > Question is: Is PCRU really that worth it? I think I'd rather stay on > a lower dose of Sprycel, rid myself of the fluid as a result, than > switch to yet another drug. The PCR results are already really low. > > Thoughts? > > Hope everyone is doing well, > Sean > > -- > [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 > -- Zavie Miller (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 e-mail: [email protected] Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 Yahoo ID: zaviem -- [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 To unsubscribe from this group, send email to cmlhope+unsubscribegooglegroups.com or reply to this email with the words "REMOVE ME" as the subject.
