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] 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]> wrote: > > >>From: peg <[email protected]> >>Subject: [CMLHope] TKI Spasticity >>To: [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 >>------------------------------------------------- >> >>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. >> >> >> -- >-- >[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. > > > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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