Kneesrbad....thanks so much for the helpful information. I don't think my issue is PAH but I will look into it. Thanks also for the dose info. It will help in my treatment to know that others have been on a lower dose. I took Tasigna, then Gleevec...couldn't tolerate either...now on Sprycel. See history below. Sounds like you are a long term CMLer....hope you are doing ok! Love your screen name....old basketball player? Tom in KY
Tom Dunham, BD: 8/1941 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 In a message dated 12/16/2011 3:07:49 P.M. Eastern Standard Time, [email protected] writes: Tom I am graced with Dr Talpaz one of the doctors who developed and tested Sprycel. I was test today at the U of M for PAH. I was put on 50 mg of sprycel after 7 Years on Gleevec. After 3 months he moved me to 70 mg but due to folliculits, which is a side affect of sprycel, he moved me back to 50 mg and is treating the folliculits with an antibiotic. His protocol is 50 mg first. If it works keep it there. If it does not move to 70 mg. See how that works. He was adimat not to start at 100 mg and work down. Look for Dr Talpaz credentials and awards for treating CML. He is one of the pioneers for Gleevec , Sprycel, Tasagnia. On Dec 16, 2011 2:21 PM, <[email protected]_ (mailto:[email protected]) > wrote: Beth...I just had to stop Sprycel because of pleural effusion...when it gets back under control, I will go to a lower dose of Sprycel. How did you arrive at 50mg? My doc is suggesting 70mg/day...what were your side effect related to effusion if any? Tom in KY In a message dated 12/16/2011 1:02:22 P.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Great news SuzieQ - you are holding your own beautifully. I have qudestion for all my CMLers out there..is anyone taking sprycel at 40 mgs or less successfully? I am on 50 but am having some unmanageable side effects. I m afraid to go less fo rfear of reistance, but it' the balance between my sensitivity to the drugs and problematic side effects like elevated CPK, swelling, and needing to get and stay in remission. Any input would be appreciated. Beth -- [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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [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 _ (http://groups.google.com/group/CMLHope) -- [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
