Hi Angie, Many years ago after my bone marrow transplant I would get the most painful cramps in almost every part of my body but it was my legs that was the worst of all.
This went on for a long time until one of my friends told me to start taking Magnesium. I did and no more cramps. Maybe you might want to try it as well and see what happens. I hope that it also works for you. 18's Marty On Thu, May 2, 2013 at 1:12 AM, ANGELYN ESDERS <[email protected]> wrote: > 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. > 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. > 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.
