Greenie...thanks for your response. I didn't remain on Gleevec at 300mg long because the rash worsened. Started to affect my fingernails, etc. Dr's at MDA took one look and stopped it. If the Sprycel doesn't work at a lower level I will suggest giving Gleevec another try. Have a great holiday! Tom in KY In a message dated 12/8/2011 5:53:15 P.M. Eastern Standard Time, [email protected] writes:
Tom, (1) when you started Gleevec and you received the rash how long did it last? (2) when they dropped you from 400 mg to 300mg did the rash start to go away. I started Gleevec in Feb. of 2000 with 400 mg, I also got the Gleevec rash and being in a study at Chicago they had no idea what to think of it. They gave me a cream to apply to the areas put that did not help. They then dropped me down to 300 mg and I've been on this amount all of these years. The rash lasted for about 2 months then it started to slowly go away and never returned. The rash covered the bottom of my feet, my arms, the top of my hands and all over my chest. And their were little bumps on the palms of hands and the bottom of my feet. I don't know if this info will help but this is what happened to me. Their were only 8 people in my study and I don't have any idea what happened to any of them. I've asked but they won't tell me anything. Hope this can help. greenie In a message dated 12/8/2011 10:48:38 A.M. Eastern Standard Time, [email protected] writes: I have just found out that I have Pleural Effusion and a little Pericardial Effusion apparently from my Sprycel use. I have been on Sprycel for about two years (100mg/day) and noticed some shortness of breath and chest pain. Xrays confirmed that one lung sack was about 30% full of fluid and an Echo Cardiogram confirmed the heart fluid buildup. I have just had a CT exam to further define the problems. A summary of my CML journey is given below. I am fortunate to have great Doctors...one at MD Anderson and one in KY who are heavily involved. I have several questions for those that may have been down this same road... 1. They put me on 50 mg of Prednisone and stopped my Sprycel immediately...suggesting that they will restart it at a lower dose when the fluid clears up. Did anyone out there have this same treatment? How do the lower doses do in controlling the CML? Did anyone have problems with Prednisone? I am generally adverse to taking lots of steroids. 2. Sprycel is my 3rd try at a TKI for CML. I was unable to take Gleevec and Tasigna successfully. If I can't tolerate Sprycel, are there any other experimental drugs that you are aware of that are a possibility? I know MDA has several studies going on in this reguard. 3. Do any of you have Pericardial Effusion....and if so, what was done to treat it? Thanks for any help you can provide. I look at this as just another speed bump in the CML journey and feel fortunate that we have so many options available for treatment. 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 -- [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_ (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
