Hi All, Thanks for all the solid input. I appreciate it.
Zavie, I will definitely consider your suggestion. My doc is Dr. Ron Paquette at UCLA - he's a great doctor, very knowledgeable, and has been involved in a variety of trials. I've been with him since day one. I was a student at UCLA when I was diagnosed. Not sure why he's pushing for PCRU; I'd always assumed it was the best thing to do but now knowing the statistics I'll bring it up at the next visit in 2 months. I'm sure he knows the stats so he must have some reason. Best regards, Sean On Mar 18, 7:27 pm, Zavie Miller <[email protected]> wrote: > 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 ofhttp://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. 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