Beth...my journey is outlined below....Good to hear that you are doing well on 50 mg. I am going to try to go to that level and see if it helps with the tiredness. Keep in touch! Tom in KY Tom Dunham, BD: 8/1941 DX CML 12-23-2008 MDA Protocol: Tasigna-400 mg, 2xday-1/09 On FLecainide for Atrial Fibrillation...episodes Q PCR bone @ 0.17 on 7/09 Acute Pancreatitis-7-5-09; Stopped Tasigna Q PCR Blood; 7-29-09 Undetectable Started Gleevec-400 mg/day--7-31-09 Developed rash-8-19-09..worsens 9-22-09 Stopped Gleevec-9-28-09 Restarted Gleevec 300 mg/day 10-8-09 Stopped Gleevec..toxic rash..10-13-09 Q PCR Bone: 0.05 Started Sprycel @ 100 mg/day-10-20-09 Some AF, Increased Flecainide (1&1/2 per day) Q PCR Bone; 0.07 (ZM's Club #1292) 2-4-10 Stopped Alcohol/Caffeine ..AF stopped Q PCR Blood 0.01-- 7-27-10 Q PCR Bone 0.01...1-25-11 Q PCR Blood-Undetectible: 5-19-11 Pleural Effusion, CE, 12-7-11..Stopped Sprycel Prednisone 50 mg/day..gradual reduction Pleural Effusion clear 12-21 11 Started Sprycel 70mg/day 12-23-11
In a message dated 2/28/2012 5:16:15 P.M. Eastern Standard Time, [email protected] writes: Yes, 50 daily is a half dose, which I have been on successfully for my blood labs for 15 months. I am going down to 40 a day next Month to see if it helps with some elevated CPK or muscle enzymes that cause a lot of fatigue for me. I know many people on 50 sprycel in complete remission. Just as a word of reassurance regarding potential side effects, I had very bad headaches in the beginning which do go away in a few weeks, but needed to pre- medicate for them to keep them from getting too bad. If your son has a hx of swelling, then they may put him on a diuretic to ensure that he doesn't have this issue. I wish him and you lots of good luck and well wishes. May he find a low dose of sprycel very effectivie and not need to ever go up on his dose. Warm regards, Beth in Chicago. -----Original Message----- From: Tom Dunham <[email protected]> To: cmlhope <[email protected]> Cc: cmlhope <[email protected]> Sent: Tue, Feb 28, 2012 12:57 pm Subject: Re: [CMLHope] Young and Strong Hi...have been on 100 mg Sprycel for 18 months. Developed pleural effusion...now on 70 mg....will keep u posted. Hang in there! Tom in KY T.E.D.---Sent from my iPad On Feb 27, 2012, at 11:51 PM, Joyce Mesnarich <[email protected]> wrote: My husband (72) was put on Sprycel about 2 years ago---50 mg, the lowest dose according to Dr. Talpaz, a great CML specialist. It has worked well for him and he has less side effects than when he was on Gleevec, which he could not take, as it turns out. Hope your son does well on Sprycel. We think it is a great drug. Joyce in IL On Feb 27, 2012, at 9:21 AM, David Stroud wrote: Hi Group I have kept up with this group now for almost 9 yrs. My son Jonathan was dx in 2003 at the age of 9. Many I know will remember him. Zavie was a great encourager for us. I know he is missed. Jonathan recently has had difficulties with his counts bouncing around.. 84/100k 47/100k 28/100k Use to continue at 3-5/100k He is now loosing weight also but was never a big guy.. 5'9 at 109lbs. Alittle concerned. Doc thinking of taking him off the gleevec of 400mg daily to the new Sprycel. I want to statr at a low dosage if so. Depression has set in also. But alot has to do with teenage life. For those that have switched to Sprycel.. what is the "low Dosage" isn't it 50 daily? Each One Take care Fran Mom -- [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 -- [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 -- [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 -- [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 -- [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
