Hi all, Sorry it takes me a while to catch up these days. Just read Beth's post on spasticity and wanted to share. There are many folks having muscle related problems with all of the CML drugs. The spectrum ranges from the seriousness of myopathy to simple muscles spasms, with everything in between. Gleevec gave me myopathy. Because I was not a good candidate for Tasigna we moved directly to Sprycel back in 2010...before it was front line approved. For me Sprycel causes such severe muscle contractions that I have developed contractures in several places in my body. At first we just thought it was my arthritis causing limited range of motion, but then several months ago finally realized what had happened. I am in physical therapy now to improve my range of motion. We have also had to radically adjust the Sprycel dosing...not just for the contractures, but also the crippling fatigue, mind numbing brain fog, bone pain and Sprycel induced depression. The only time I feel really good now is on Sprycel "holidays".
After many dose reductions here's where I am at...in 2011 we started dropping the daily dose....first 70mg then 50mg. We also tried 50mg every other day, then 20mg daily. All of these changes still held me at PCRU. But even at 20mg daily it was difficult to have a normal life. There was also a concern from the specialist I see who helped develop Spycel. He believes that from what he is seeing, the way Sprycel affects the CML is more related to the size of each dose, rather than the frequency, so he had a concern that 20mg a day would not hold the PCRU. Although I have heard of cases where it is. We also noted that for me a "washout" of a few days off Sprycel helped me recover from the side effects. Without that washout, the affects would load up. So this was when we started experimenting last Oct with twice weekly dosing. Unfortunately 70mg still proved to high a single dose for me, so we did a brief five months at 50mg every third day. However, the side effects from each dose are still so severe, it is like sticking my finger in a light socket, everything in my body clenches. This starts two hours after each dose and lasts for almost 24 hours. Every third day dosing was just craziness, since I couldn't plan around that well...and found myself dragging myself painfully through life every third day...hating every minute of it. We finally realized that the only way I could have any quality of life was to drop back to a twice a week dose and take those days out of my schedule...just plan on being down for the count on those two same days each week. So we are now at 50mg two days a week. I take a muscle relaxer with each dose, and again at 12 hours if I need it. This really helps with the muscle spasms. I lose two days out of my week, but the quality of the other five is much better now. We are monitoring my PCR monthly to see if the PCRU still holds. I can't recommend experimenting for everyone...it carries a risk of becoming resistant. However, the quality of my life had become so bad that the cost of saving my life was no longer worth it. Life in the absence of any quality is simply not a life. For those of you who's reactions to TKI are not as dramatic as mine, adding a muscle relaxer to each dose, even daily, might bring the muscle spasm relief you need. My drug of choice is Robaxin...but to each man his own! Warmest regards to everyone! 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 --- 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.
