Hi Tom and all, My onc doesn't want me to reduce my meds, he says if it's not broke don't fix it and told me not to worry about PE, but I do worry about it and I took it upon myself to reduce down from 100mgs to 50. I am doing good; still in full remission. I think it is the fear that keeps us from not taking it as prescribed because I still worry I am not taking enough. The fear comes with what we go through when we are first dx. I had to have the blood cleansing done twice during my first 6 years of being treated. Gleevec quit working in my fifth year and I was put on Tasi which caused me all kinds of havoc. It completely quit working for me and I was put on Sprycal after a battle with my doctor. I think I had pancreatitis as that is when my right side started hurting me bad. I haven't had PE and my onc at Moffitt says I don't have to worry about that. I just don't believe him sorry. I'm doing good; BCR/ABL RESULTS WERE 0.001.924 I'm sure they are lurking in there and waiting for a chance to get out. Just take one day at a time and hope for the best. Good luck everyone, Jeanie<3 In a message dated 6/6/2013 10:19:31 A.M. Eastern Daylight Time, [email protected] writes:
Carol.....I had the same problem....what finally fixed the Pleural Effusion for me was to reduce the dose....They (MD Anderson) took me down gradually from 100 mg/day....and I have been on 20 mgs/day for over a year now and it seems to be working....no PE and good blood results/PCR's. In addition the other side effects are much better at the lower dose! Everyone reacts differently to these TKI's...so you need to do this under good supervision. As you can see from my complete history below I took a long journey to find the right one/dose. Hope this helps! Tom in KY Tom Dunham, BD: 8/1941 Updated::4-7-13 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 Q-PCR Bone MDA-<0.01...3-5-13 On Jun 6, 2013, at 7:46 AM, [email protected]_ (mailto:[email protected]) wrote: I haven't posted in a while, but always read everyone else's...now i have a question for everyone on Sprycel. I was switched to Sprycel 2 years ago due to kidney issues with the Gleevec. I was diagnosed in July of 2001.Have been undetectable for years...now I am getting pluerral effusions. I just had the second one drained yesterday....The onc has taken me off Sprycel for 2 weeks.....In everyone else's experience does that seem long enough. I took an 8 day break a month ago but the effusion was back in 5 days....probably was going to happen anyway....I think he is being very cautious, but just wondering what everyone else has done...went into the archives and learned a lot....but need a little more advice to argue my point of a longer break....thanks....Carol Kalat -- -- [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.
