Hello everyone. Well its been a while.So many new faces. I read the forum almost daily, to keep up on how everyone is doing. Some history: Failed on Gleevac after about 12 months. Painful loss of response, never progressed, platelets started to go up. Mutation found, I think it was e355g (355 something). Started sprycel. Had MMR within 4 months. PCRU around 7 months, sustained (Just coming up on sustained PCRU for two years this month) Last PCR was in mid August, still PCRU.
Since Starting Sprycel my side effects though not consistant have been significant.Various bouts of bone pain, Head pressure, hip pressure, spine pressure, burning bone pain in my shoulder blades and hips (often times requiring Hydrocodone). Early on I had this odd tingling warm painful sensation along the back of my hips. Lasted a few days or weeks can't remember. Then several months ago I had a similar sensation deep in my left leg, burning tingling and well felt. Starting at the beginning of this month I had the same sensation in my right leg. Well this month has been rough with bone pain, headpressure, sickness. The deep burning tingling almost needlelike sensation in my right leg has been quite severe. Doesn't bother me so much when I walk but when I set and diffintley when I am laying in bed, it is quite rough. So much so I can't sleep. Hydrocodone pretty much eliminates it but I don't like the hangover feeling I get after words. Has anyone else had this? Worried me so much I moved up my CBC and PCR. CBC shows everything normal. Still waiting on the PCR.
I guess like every CML'r, anything new and bad I think the worst. 4 year cancerversary coming up this Thanksgiving.
Terence in Colorado