Richard.....I do the same thing...and also keep a short summary of my journey that I give to my doctors. It is a handy way to also communicate to other CMLers about one's journey. As you can see, I have been on all three TKI's...and finally doing well with a low dose of Sprycel. I believe it was Zavie Miller who introduced me to this technique. Tom
Tom D , BD: 8/1941 Updated:9-5--12 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 On Flecainide for AF...still had frequent episodes Q PCR bone@ 0.17 on 7/09 Acute Pancreatitis-7/5/09 Stopped Tasigna-7/13/09 Q PCRU blood-7-29-09 ! Started Gleevec-400mg/day-7/31/09 Developed rash ~ 8/19/09 Rash treated with Steroids..improvement Rash worsens~9/22/09 Stopped Gleevec-9/28/09 Restarted Gleevec @300mg/day-10/8/09 Stopped Gleevec-10/13/09-toxic rash\ AF returned infrequently Q PCR bone-0.05 Started Sprycel @ 100mg/day-10/20/09 Some AF...increased FLecainde..1, 2x/day Q PCR bone..0.07 Stopped Alcohol…no AF, ½ Flecainide 2x/day Q PCR Blood…Non Detectible-12-13-10 Q PCR Bone..0.01--2-25-11 Q PCR Blood…Undetectible-5-19-11 Reduced Flecainide to 1/2 per day Pleural and pericardial Effusion: stopped Sprycel-12-6-'11 Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction Pleural Effusion clear 12-21-11 Started Sprycel 70mg/day..12-23-11 QPR bone <0.01...2-16-12 Started Sprycel 50mg/day..3-10-12 Chest pains...slightly more PL Eff 4-19-12 Steroid Dose pack to alleaviate..still on 50mgs Change to 20 mgs/day Sprycel..4-26-12 Chest clear, effusion gone-5-14-12 Q-PCR Blood-Undetectible-6-13-12 Neuropathy moving up legs, weakness noted ~7-12 Q-PCR Blood MDA-<0.01…8-21-12 In a message dated 4/7/2013 12:05:41 A.M. Eastern Daylight Time, [email protected] writes: When I was dx'd in 2003 I made a spread sheet for comparing my tests. I took a copy to my ONC one time and shocked him. He was digging through my file to prep for my appointment. Each time I get my results I update my log. I will test next week to see if I am maintaining my low counts without Gleveec for 41/2 years. Richard H. On Saturday, April 6, 2013 10:52:42 AM UTC-5, ricardo wrote: Less th.1% (1% = 0.01 ) means 2 log reduction Less th. 0.1% (0.1% = 0.001) means 3 log reduction. The goal is to achieve 3. But many people stay in 2 and keep it under control. Keep in mind that what matters is not the number itself but the tendency - I mean you should see the past numbers as well and compare with the atual number. If it increases more than 1 log reduction - It s a warning. If not, lt is fine. If it decreases, very good. If it goes to zero - amazing grace. Em 29/03/2013 10:29, "Ana Burgos" <[email protected]_ (javascript:) > escreveu: can somebody tell me how many log reduccion is 0.07? is it a major molecular response? -- -- [CMLHope] A support group of _http://cmlhope.com_ (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]_ (javascript:) To unsubscribe from this group, send email to _CMLHope-u...@CMLHope-u...@<WB_ (javascript:) For more options, visit this group at _http://groups.google.com/http://groups_ (http://groups.google.com/group/CMLHope) --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+u...@cmlhope+u...@<WB_ (javascript:) . For more options, visit _https://groups.google.com/https://groups_ (https://groups.google.com/groups/opt_out) . -- -- [CMLHope] A support group of _http://cmlhope.com_ (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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
