Hi Peg and thanks so much. I started on 150 megs because they couldn't get my platelets and WBC down even after I blood apherisis. I stayed on the 150 for about 2 months until my counts were going down too low. I was then put on 100 mgs. I am in PCRU and it was proved by BMA but my onc still won't let me lower the dose. Thanks again this was great! My doctor wants me to take Bystolic a beta blocker. Do any of you take a beta blocker? Thanks Jeanie<3 In a message dated 10/2/2010 1:19:05 P.M. Pacific Daylight Time, [email protected] writes:
Okay... for Beth and those waiting for the outcome of my meeting with the doc that did Sprycel developemental research...here it is: 100mg IS the recommended dose. Does he have patients on less?... Yes...and here is his criteria for reducing the dose: 1. Side effects (he says all side effects on this drug are reversible with reduction or discontinuation)...or...2. Zero achieved and maintained on PCR...verified at least once with BMB. In regard to starting at a lower dose and "tapering" up to 100mg, he said he does not understand why MD's would want to advise their patients to do this, and cautioned against it. He understands that the thought is that it gives the body a chance to "adjust" however, he feels that it also gives the chromosomes a chance to become resistant and could result in Sprycel not being effective. Sort of the same way that taking less of an antibiotic than you would need to overcome an infection allows the infection to become resistant to the antibiotic. For those who are changing from Gleevec because of serious GI side effects and are concerned that Sprycel might be the same... he said that Gleevec is well recognized as the cause of severe gastritis and severe diarrhea in many folks. While there have been some incidents of Colitis with Sprycel, not many, and generally speaking most folks will not have any serious GI side effects on Sprycel. However, a break between the two is recommended to allow GI irritation from Gleevec to settle before introducing Sprycel. In regard to pain medications for headache, etc.... Contrary to popular belief, with Sprycel, Tylenol is OKAY! However, Aspirin, Ibuprofen, Advil, Motrin, Aleve, Naproxin Sodium, or narcotics containing any of these ARE NOT OKAY. They can thin the blood too much when combined with Sprycel. Caution must be taken when adding any med to Sprycel that can thin the blood. In my case, I do occassionally use Celebrex, which can cause the same problem, however, he said it is probably okay as long as my platelets are normal and I only use it occassionally. He believes that current research will soon produce something better than the current TKI's but for now both 2nd gen TKI's, Tasigna and Sprycel, are stronger than Gleevec and should produce better results at supressing CML in more people. Hope sharing this is helpful to you. Keep the faith! peg -- [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
