Yes a long term with some of the founding doctors of all the treatments for CML On Dec 16, 2011 3:41 PM, <[email protected]> wrote:
> ** > 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]> 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] 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. 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