24 replies to this topic

[p.a.m.]

I've been on Gleevec since 2007. Cramps and Spasms has always been an issue.  In the past 6 months the spasms/cramps have become unbearable at night.  In the past if the spasms began and I could get to the standing position it would eliminate the spasm. The pressure of standing upright had a corrective bearing on preventing the spasm from continuing.  Now every night when the spasms begin...they are unbearable.  They are so intense.  They begin in the groin and continue all the way to my ankle. Only in one leg, thank goodness.  I take Vitamin D, multiple vitamin, vitamin B Complex.  Doctors also have me take prescriptions neurontin  and klonopin....it's not helping!  Has anyone else experienced these types of spasms, if so, any suggestions?

[nathaliece]

P.A.M.,

I get killer Cramps and spasms from time to time and like you, find the easiest way to correct is to stand.  Sometimes my toes look contorted when I first awaken.  I have come to accept that this part of my new "normal"!

Nat

[p.a.m.]

Yes they are horrible.  I'm wondering if requesting a sleep study would be appropriate so they can evaluate what is truly happening.  As I mentioned I used to be able to stand up and the cramps/spasms would cease.  Now its impossible to stand up because the spasms are so severe.  I find it very difficult to "accept this" as the "new normal".  No person should have to endure this kind of pain every single day for the rest of their life.

[hannibellemo]

p.a.m.

What has your response been to Gleevec? Perhaps it's time to discuss a reduction in dose, even if only temporary, or a complete vacation to see if the Gleevec is truly to blame. I say that because I discovered after being off Sprycel for 6 weeks, a very strange rash on my toes only that I swore had to be from the Sprycel, returned.

Good luck and I hope you find a solution to get you through this.

Pat

[Trey]

Muscle cramps have been my #1 side effect for my 6 1/2 years on Gleevec.  They are somewhat reduced on 200mg, but still a PITA.  Extra potassium seems to help.

[Pin]

Hi p.a.m., I had really bad cramps that developed about 10 months into treatment. I took magnesium, which helped a little but then I added calcium and it helped so much! I take calcium citrate (500mg) but I imagine you could take any form of calcium. It made such a difference to me, I hope you get some relief soon.

[PhilB]

Hi P.A.M.

Like the others, I'm afraid I have nothing to offer except sympathy.  The Glivec cramps are a bitch.  I've had to invent a whole new swimming stroke where I press the foot with the cramping instep hard into the other thigh and try to make it to the side without drowning.  After 3 years of practice I'm really getting quite good at it.  Last week I took the kids on the water slide at the pool and made my best ever 'launch' into the slide, swinging from the bar above it, only for the same cramp to hit again when I was basically horizontal in mid air.  Highly entertaining, but not fit for a family audience.

[Marnie]

My muscle cramps and spasms (hands and feet) were awful on Gleevec.  I had a few scary moments on the motorcycle (trail and road. . .but trail especially) when hand cramps occurred.  My fingers would freeze up in the most awful positions.  Try engaging the clutch to switch gears with a frozen hand. . .while going up a technical, rocky section.  Not a pretty picture!  Foot cramps were PAINFUL!!  I have not had a single episode since switching to Sprycel, though all of the TKIs have their own unique side effects.  Good luck.  Your cramps/spasms sound horrific.

Marnie

[GerryL]

I used to get muscle cramps in my calves upon waking and doing a stretch, I've found celery seed has helped, no idea why. But when I stopped taking it the muscle spasms came back.

[Happycat]

I must second Pin on the value of taking magnesium (Mg) and calcium (Ca) supplements. Helped me greatly. Mg gave some relief, but adding the Ca really helped get it under control. I take 2 Mag-ox and 2 Ca- chocolate chews each morning.

Traci

[janne]

P.A.M.

Your cramps sound absolutely horrible. I think all the recommendations offered here are terrific. A woman at the local health food store promoted a magnesium oil spray that helped her with heart palpitations tremendously ...she sprayed it directly on her chest. She was quite convincing and I bought it. I have only had about 3 or 4 very painful leg or foot cramps since starting TKI's in 2008 (prior to buying this oil). I had a really bad one on Tasigna a few months ago, and bought the oil sometime after this.  I have had two incidences of foot cramps since then and I sprayed my magnesium oil spray directly on my foot,, about five sprays, massaged it in quite well.. The cramp resolved within about three minutes. I have never had them in my hands...yikes ! You guys are real troopers.  (It is described as a pure magnesium oil in a highly concentrated spray of magnesium chloride - nothing added and nothing removed. It was only $9.99 and I decided to try it). I have had nothing of your magnitude, but I would certainly try magnesium and calcium orally first if you do not think you are getting enough in your current supplements.

[p.a.m.]

I want to thank everyone for your help.  I do take (Ca) and (Mg) Chelated Manganese, Ubiquinol CoQH, PotassiumCl ER, Multiple Vitamin, B Complex.  Nothing has helped.  I achieved 2 out of the 3 remissions.  The Doctore/Hospital Lab keeps switching what labs they use which is making it a bit more confusing to track, My Potassium still wants to tank a bit, protein 4.9, WBC 2.0, RBC 2.81, HGB 11.7,HCT 34.1, platelets 174-208, neutrophil 1, BCR/ABL UQUANT Major is .0053.   I spoke with Hem/Onc Dr yesterday he said to go ahead and take 300mg until I see him in a couple of weeks. I thought I would try 100 mg in the morning and 300 mg in the night for a couple of days first.  The last time I did 200 morning and night I was just exhausted all day.  I know everyone is different, having this stinks, I was so healthy before and this is so not me, I feel like such a burden to my family. Thanks Again....

[Happycat]

Have your electrolytes been checked?  You want to make sure they are okay.

I had particularly bad leg cramps in front of lower leg last year. Had my dh furiously searching for stretches in mid spasm. I needed to stretch my anterior tibialis. And the stretches are kinda weird, but it did help. Anyway, try googling where your specific spasm occurs and see if there is a good stretch for it.

Sounds like you may have a whole leg spasm?  If so, you may want to confer with doctor in case it is from a major pinched nerve, bulging disc, etc.

[Susan61]

HI:  Your not alone with these terrible cramps as you can see.  I have just accepted it as part of my life after all these years, and I do get them pretty bad.  The one that I get on the inside of my leg from the groin down is the worst, and then I have gotten the ones where my hands just go into a position where I cannot straighten out my fingers.  I get them on the outside of the ankle, very weird.  I am hoping after I see my Oncologist in July that I get cut back to 200mg of my Gleevec like Trey, and get some relief. 

     I do believe this is all from the Gleevec, and nothing else.  I also walk it off when I get them at night and use a ice pack for some relief.  The groin one is a tough one to get rid of.  Just know your not the only one with this.

[valmaria]

I was actually going to ask the same question ....only......I get muscle spasms everywhere .  They are the most God awful, painful and debilitating spasms ever. I get them in my hands, fingers, calves, thighs even my torso, my feet and my toes .   Pretty bad when they start moving and getting stuck in positions that truly are not natural. I have been on Gleevec on and off since Feb 2011 when I was diagnosed. My oncologist tried me on Sprycel and Tasigna but the side effects on those were terrible as well.  (different but still terrible). Not sure bout anyone else but I am ready to buy a gun....and believe it or not I have an extremely high tolerance for pain....but this is insane!   I go back to my onc. on the 29th of this month....of course I will share all this with him, not sure what can be done.  Thanks for letting me vent!

Val

[Aussiegirl]

I also get camps and spams every where the worse ones are the torso ones. My hands and fingers cramp like I have ALS or something.I swear I get them in my organs as well. I have been on 400mg of gleevec for 2 years now and have recently noticed them subsiding only after giving up caffeine salt and white sugar.  Also there are 711 drug interaction listed on drugs.com that helped. Pain killers of any type make them worse. I eat a lot of bananas now too which seems to help that and the big D. The most frustrating part is my oncologist insist its not a side affect of the gleevec. Has yet to be helpful with the spasm issue however I am in remission not that it makes much difference as my quality of life pretty much sucks

[valmaria]

Aussiegirl,

I too get them in my organs....they are awful. I told my oncologist, and he said it is most definitely side effects of the Gleevec. He told me to start taking 200 mg of Magnesium (chelated) and 200mg of Coenzyme Q10.  I just started those yesterday. I won't give up my coffee, that is just not happening. I was using Splenda  but have since found out that its pretty much poison. So I went back to regular sugar.  Just 1 tsp in my coffee. I agree with you, remission or not, quality of life does pretty much suck. (I still get nauseated from the gleevec as well).  But I guess its better than the alternative.
Val

[Aussiegirl]

Thanks Val for your reply I knew I wasn't nuts about the organ cramps even though my dr thinks its in my head lol. I first tried tasniga before gleevec and it was much worse forcing me to change. Your right I suppose every day above ground is a good day. I just wish my dr would quit blowing off the side effects. Now the splenda thing can you pm me some links or info on that as I suspected as much I recently switched to stivia but it has a bad after taste and seems to sweet guess I will try palm of coconut next. Trying to eat healthy to avoid some of the side effects is our only option.

[dennyzb]

My doc also acts like I am nuts when I complain about cramping and bone pain. The side effects do really have a impact on my life. I do like my doc  but wonder why the doc blow off the side effects like they are nothing? I agree with Aussiegirl  when she states the side effects of the meds

makes much difference as my quality of life pretty much sucks I have been eating right and living clean for 10  years before my DX