Wow Angie, your cramping story sounds just like mine, the throat cramps and the muscle that runs along the left front side of my leg is worse. Mycar, I have a 6 speed Trans and I have to push the shifter into neutral and pull off the road and walk it off. Well I flew into Chicago yesterday to see my cancer Doctor at Northwestern University and they canceled my study. Northwestern is doing their own study and Novartis is involved it to. The good thing now I only have to fly into Chicago once a year to pick up my med's. and they are going to be free. I don't have to keep a diary any more and their is only going to be 2 other people in it with me plus 200 globally. She told me that if I want to see a cancer Doctor here in Fort Myers, FL. that's up to me, so that means I only have to get blood twice a year. I started the first study on January 9th 2000 and have been on Gleevec all these years. So their is a light at the end of the tunnel. Getting back to the cramps I still use a bar of Dial soap between the sheets to help with the cramps and it does help some what. So they gave me a year's supply of Gleevec in a bag and I felt like I was looking over my shoulder to see if in one was following me to take it and run off with it. You all take care, Greenie in stormy raining Florida. In a message dated 5/2/2013 1:12:43 A.M. Eastern Daylight Time, [email protected] writes:
I was really bothered by cramping for some years (I have been on Gleevec for 12 years now.). I find that the best and fastest relief for cramping in the feet is standing barefoot on a COLD surface. As my bedroom is carpeted, I used to keep a large plastic covered book beside the bed to step on when the cramps attacked. It was, at least, cool to my feet. Any movement repeated a few times with effort will cramp me....peeling potatoes, polishing silver, cutting with scissors. I have even gotten a cramp in my lips while putting on lipstick. The cramp of the throat muscles while yawning is the MOST uncomfortable of all. I hate getting a foot cramp while I am driving at high speed on a freeway. I tried potassium supplements, and drinking orange juice when a cramp struck. After so many years I still get them but they are fewer and farther between. I always look around and see unfortunates whose lives are worse than mine, and I am grateful for the ability to live a pretty normal life despite CML. What lies behind us and what lies before us are tiny matters compared to what lies within us.... Angie -----Original Message----- From: ICANDOALLTTC <[email protected]> To: cmlhope <[email protected]> Sent: Wed, May 1, 2013 2:28 pm Subject: [CMLHope] Jim and Millie and all Thanks Jim for all your support. You there Millie? Just wondering how you are? Jeanie<3 In a message dated 4/30/2013 5:51:30 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: Hi Peg, I also have the cramping, I'm on Gleevec since it was approved in the USA. I was dxed 4/12,1997. I've experienced many of the known side effects. Eye bleeds, cramping in the legs(upper and lower), feet insteps, forearm, hands, I inquired abut muscle relaxers and Onc. gave me some and it didn't help. The legs and hands respond to hot water, the feet don't! My Pcr test is negative that's a plus that we are so happy for. I'm 68 and the side effects aren't bad enough for me to want to venture into the unknown with a different med. that may not even work for me or the side effects are worse than what I currently have. 18s to all my fellow warriors we must never give up research is making head way as never before who knows what they ill come up with next. some day the big "C' will stand for CURE. I pray every day for that AMEN. God Bless us all. Jim Rodeghier --- On Mon, 4/29/13, peg <[email protected]_ (mailto:[email protected]) > wrote: From: peg <[email protected]_ (mailto:[email protected]) > Subject: [CMLHope] TKI Spasticity To: [email protected]_ (mailto:[email protected]) Date: Monday, April 29, 2013, 10:57 AM 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_ (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. 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