Hi all, I have been on Sprycel for 5 years this month. I have never had PE and it was the only drug that put me in remission. I went through Gleevec and Tasigna for about 5 years. I have had other issues though and sinus headaches with migraines is one of the main ones. The jaw problem started a few weeks ago and is ongoing as of today. My platelets were a little high with the last blood test. Getting them checked out the end of the month. Hope they went back down. Blessings to all, Jeanie<3 In a message dated 9/19/2014 1:23:03 P.M. Eastern Daylight Time, [email protected] writes:
Hi Peter, While it is true that many develop PE while on Sprycel; the upside is that the PE often coincides with PCRU! And unfortunately diuretics do not reduce the fluid that actually is in the sac that surrounds your lungs. For me it usually takes a break from Sprycel; I know that many people avoid Sprycel because of this risk, but to me, the risk of pleural effusion is less of a risk that the ones that come with Tasigna's Black Box Warning. My PE's have been more of an inconvenience at this point and fortunately clear quickly. Best to you all, Michele On Fri, Sep 19, 2014 at 4:54 AM, Peter <[email protected]_ (mailto:[email protected]) > wrote: >From what I have read here and elsewhere, it seems to me that Sprycel will definitely cause PE, it is only a question of WHEN, not IF. For this reason, I have avoided this drug like the plague. Currently, Tasigna is keeping at a 3.2 log reduction, which is a sub-optimal response. My doctor keeps telling me, that PE is "easily controlled with diuretics". However, I have not heard this from anybody else. Does anyone here know anything about the use of diuretics to control PE? Peter On Monday, September 8, 2014 11:33:33 PM UTC-4, grammie wrote: Have been reading the reports of various CMLers having side effects from the various TKIs. Jut wanted to weigh in with my husband's latest experiences. He was short-winded and family doc ordered a chest X-ray which revealed some effusion. We reported this to Dr Talpaz (his CML specialist) and Dr T wanted him to have an echogram which we were able to do locally with his regular cardiologist. Dr T said to quit taking Sprycel immediately and not to continue until he and the cardio conferred. As of now, he will have another echo in a week to see if there is any change one way or the other. He has an appointment with Dr Talpaz in Michigan the middle of October and it sounds like they are going to have him stay off Sprycel until at least then. It's kind of scary being off the medication that you know is saving your life. But Dr T is not concerned. Don't know where this is going next. All part of the journey. Continue to pray for all the warriors out there. Thank you for your input. Joyce in IL -- -- [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 --- 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]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- [email protected] _www.LearntoBallroomDanceOnline.com_ (http://www.learntoballroomdanceonline.com/) -- -- [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]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [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/d/optout.
