20 replies to this topic

[pennyarizona]

Hi Everyone,

Lately I have been having alot of problems with leg cramps and spasms.  I ended up going to my primary doctor and he prescribed me Amrix.  (It is a muscle relaxer.)  Is anyone else here taking Amrix and Gleevec together?  Did Amrix help?  Well just thought I would check and ask.

Thanks,

Penny

[pennyarizona]

Hi Everyone,

Ok so it's me again.  I tried the Amrix and it didn't really help it just made my muscles feel even weaker.  My legs were twitching, spasming, hurting, cramping, etc.  It got to the point where I could barely walk to the bathroom.  It was horrible!  I got a hold of one of my old oncologist and he said to try taking ibuprofen.  That did help a little.  After finally getting a hold of my current onc he said to stop taking my Gleevec for a week and see if my legs get better.  It's been two days that I haven't taken my Gleevec and I can tell a little bit of a difference.  Still have the twitching and spasming though.  I will keep you all posted.  I hope this all gets figured out it's very frustrating, uncomfortable, and depressing.

Thanks for listening,

Penny

[scuba]

Could be Magnesium/Calcium depletion?  Muscles cramp up when these minerals are low.

I had some cramping in the legs, and I started a supplement with Mg and Ca. and the cramping is gone.

Just a thought ...

[simone4]

Penny, I have "restless legs" at night wth I lie down. Ibuproven seemed to

help, althought I don't know why. I also drink a glass of tonic water with

lime every evening to help with the cramping.

Hope it settles down soon.

Simone

[pennyarizona]

Hi Simone,

In the email I received from you, you mentioned anemia.  It's funny you mentioned that

because when I went to the ER on the 17th they did say I was a little anemic.  And yes

my legs do get worse at night.  They do get "restless".  But during the day I just have

an overall weakness and they feel sore.  I do wish and pray it gets better.  It's so

fustrating not to be able to walk normally.  I have not tried tonic water yet.  I have mixed

feelings about tonic water.  I thought I read somewhere on here that tonic water has

something in it that isn't good for you but then I keep reading that lots of people still

use it.  I think I am just going to have to break down and try it.  I can't take it anymore.

I am hoping being off Gleevec for a week will help my legs go back to normal.  Thanks

for your response.

Penny

[pennyarizona]

Michael,

Thanks for your input.  I may have to try that too.  I am going for a lab test next week and if I am low on those then I will talk to my onc about starting mag and calcium.

Thanks,

Penny

[Susan61]

Hi Penny:  Lately it seems like everyone is complaining about leg pains and cramps, even friends I have that do not have CML.  I am up a lot at night with pain, and the only thing helping me is the Ibuprofen.  I am not supposed to take it, due to other health issues.  I do have Arthritis in addition to side effects from the Gleevec, therefore, its hard at times for me to tell the difference.  I have tryed used a heating pad at times also.  I had my Magnesium levels checked, and they were normal.  My husband uses tonic water for leg cramps.  He hates the taste plain.  He mixes it with his ice tea, and it really has stopped his leg cramping.

It could be so many things, but I hope you stay on your Gleevec.

    Make sure anything your primary doctor prescribes is checked out with you Oncologist before taking it.  You have to watch your combinations of drugs.

Susan

[Tedsey]

I would try to find a tonic water that doesn't have sodium benzoate or any benzoate or acesulfame potassium if you can.  I cannot handle the taste of tonic water.  And interesting you all mention leg cramps.  I have been having them too.  Some people here have tried straight quinine (what is in tonic water).  Not sure if that tastes better.  Hope the cramps go away soon.

[pennyarizona]

I found this story today.  It scares me bcuz it sounds like what I have been dealing with.

http://www.drugs.com...mage-12658.html

[HeatherZ]

I was getting the kinds of muscle cramps you describe but they went away over time.  I also got horrible bone pain in my legs and arms that I ended up taking narcotics for.  I am now getting bad muscle cramps in the arches of my feet.  I mostly get them in the late afternoon, evening, and when I am in bed.  They hurt like heck but I am trying to push through.  My Onc keeps saying that the side effects will dissapate as my body adjusts to the Gleevec.

That article was pretty scary.

[pennyarizona]

Hi Heather,

I'm sorry to hear you are having really bad muscle cramps in your feet.  How long have you been taking the Gleevec now?  I was on Gleevec for almost a year and at first I was doing okay with just a few issues here and there, normal stuff.  Then about 4 to 5 months ago my leg and feet just started slowly over time getting worse and worse until it got to the point where I could barely walk.  I don't know if maybe I have muscle damage like the story.  I hope not, I don't want this to be permanent.  I started taking the lower dose of Gleevec but after taking it 3 days in a row all my pain is just starting up again.  I am probably going to have to be switching to Tasigna now and that scares me to death.

Thanks for your response,

Penny

[Steff]

I am interested in muscle pain associated with Tasigna.  I was diagnosed in June of '09 and was started on Gleevec which worked well but had lots of side effects.  In January I switched to Tasigna and the side effects have been considerably better.  But, for the last two months I have increasing muscle pain and lower back pain and was told by an orthopedic doctor that I have muscle weakness which was quite a shock.

I wouldn't describe my pain as cramps though - mostly soreness.  So I'm not sure I have the same thing you do.  I wouldn't take any meds witout discussing it with the oncologist.  There is drug interaction to be concerned about and I want to get to the bottom of what is causing the muscle pain.

A CPK blood test was recommended by a neurologist and orthopedist and has something to do with muscle enzymes. I will try to learn more about what this means.  The concern I have is that there might be permanent damage affecting my ability to get around and be active.  Anybody know anything about this?  I'll post whatever I learn.

Steff

[pennyarizona]

Hi Steff,

I am sorry to hear that you are also having problems with your muscles.  It sounds like what you are dealing with is similar in a way to me.  Most days my leg muscles do just hurt and feel weak.  Other days I will get sharp pains like they are burning.  Then other times I may move them the wrong way and it feels like they want to cramp up like a charlie horse.  Sometimes especially my lower legs will jump and feel like there is something moving around in them which will make my legs twitch.  Mostly though the majority of the pain and problems or in the back of my thighs.  To this day I am still having the problems.  I can't walk long distances, can't stand in one spot for to long, and I can forget stairs.  I haven't gone to a specialist yet.  I see my oncologist this Thursday to discuss switching to Tasigna.  Now I am a little nervous because you are saying that the Tasigna might be causing your muscle problems.  Let me know what you find out.  I really would be interested to hear it.  Take care and I do hope your legs get better and it isn't permanent.

Penny

[Steff]

Hi Penny

I've heard that many people have muscle problems with Gleevec.  I had lots of other issues with Gleevec - severe rash, hair loss, fatigue, swelling and nausea.  Since I switched to Tasigna in January all that has vastly improved.  All I'm left with is the muscle pain and some fatigue.  My muscle issues aren't as bad as yours so you should look forward to switching to Tasigna.  With Tasigna, have no more nausea, just a slight rash, my hair is back and I lost 5 lbs of fluid.  My oncologist said that the side effects one person has are usually different when they change meds.  Good luck with the Tasigna you will probably do well.

Steff

[pennyarizona]

Hello Everyone,

I thought I would give you all an update.  It's been about two months that I have been off Gleevec 400mg.  (There was three days I did take 300mg.)  My oncologist thought by taking me off the Gleevec I would slowly get better.  Well I haven't!  He is stumped.  I have been in so much pain and I am now bed ridden.  I am now using a wheelchair.  I have been to the ER twice, have had several blood tests, and have had an MRI on my back.  The blood tests and MRI showed nothing.  I have an appt. for a pain specialist tomorrow morning.  I hope they can help.  I am so frustrated and depressed I am on the edge about to go over.  I know everyone has their own problems but I just ask my leukemia friends please pray for me.  That's all I have been doing is praying, praying that God will lead me to the right people who can figure this out and help the pain go away.  Thank you for reading.  I will keep you all posted on any changes.

Take care,

Penny

[nadee546]

Penny,

I am so sorry that you have been so ill. I wish I had some words of wisdom but I'm sorry to say that I don't. I will tell you that you will be in my prayers and I hope they find out what is happening to you. t might not be CML related at all. Have they started you on any other medications such as Tasigna or are you med free at present? I hope the pain specialist can help with some relief. God Bless          Nadee

[pennyarizona]

Hi Nadee,

Thanks for responding and for your prayers.  My onc wants to switch me to Tasigna but we are waiting until we can figure out what's going on with my legs.  I told him I know how serious cml can be but my number one priority right now are my legs.  I can't live like this in pain and bed ridden.  So I am currently only taking nurotin and vicodin for the pain.  I really hope that the pain specialists figure out the problem.  Thanks again!

Take care,

Penny

[VickiW]

Morning Penny,

First, of course I will pray for you!!!  I am a 3+ year CML survivor and spent 2 of those years on Gleevec.  I am on Sprycel now.  I had, MUCH milder than you, but similar symptoms on Gleevec.  Same, but milder yet, when switched to sprycel then slowly increased until June this year and things went crazy! I never connected the foot pain, then spasms, new "different" cramps, etc.  When I developed the burning pain in my thighs, etc. my Onc knew right away what it was, peripheral neuropathy, and put me on Neurontin.  What a difference!  After a few weeks of adjustment to the new med, I have my life back!!! I have since gathered some resources and been on several neuropathy websites and from what I have read, boy, your symptoms sure sound familiar.  I am no doctor, just a fellow survivor, but it might be worth looking into.  Most of the info you will find is geared for diabetics because they are the most common sufferers, but as you dig more you will find those of us being treated for cancer (aka taking or exposed to toxic drugs) get it too.  In fact, I now know I had mild neuropathy before dxd because one of the potential side effects of Leukemia itself is peripheral neuropathy.  Check into both sensory and motor neuropathy.  Sounds like you could potentially be dealing with both, as am I.  Prayers of course and keep us posted.

Vicki

[CallMeLucky]

Hi Penny - So sorry you are going through this.  As others have mentioned it would seem you are suffereing from Peripheral Neuropathy and possibly the broader condition Fibromyalgia.  Fibromyalgia is tough to treat/diagnose becuase it's symptoms can be general and apply to a lot of things.  It sometimes becomes a catch all bucket for unexplained pain etc and sadly, I have come across quite a few doctors who just roll their eyes when you even bring up the topic.  Doctors tend to not like things they can't diagnose with certainty.  I went through a 6 month bout with this 2 years ago, prior to my diagnosis.  It is believed that it was caused by Ebstein Barr virus.  I often wonder now if it was the onset of my CML, or if perhaps the severe Ebstein Barr virus I had played in roll in me developing CML.  Anyway, at the time I had a lot of trouble finding anything that worked.  I saw a neuro surgeon, when he determined there was nothing to cut out, he sent me on my way.  I wound up with a very knowledgable Infectious Disease specialist.  These doctors tend to be real detectives and really dig deep to see if they can come up with what the problem is.  It might be worth your time to consult a good infectious disease specialist.  You should probably also look for someone who specializes in Fybromyalsia.  You just don't know what the cause is, CML in general? TKI drug? some other infection like Lyme or maybe even Ebstein Barr, or any other number of possibilities.  For me, nothing worked well for the pain, with the exception of Lyrica.  I started on neurontin, it worked for a little while then stopped and they switched me to Lyrica.  Lyrica is pretty good.  It is more potent than neurontin so you don't have to take as much of it.  It also supposedly binds to the pain receptors better.

These two links are worth reading.

http://www.healthfitnesswellbeing.com/fibromyalgia/causes/peripheral_neuropathy_fibromyalgia.htm

http://www.nursingcenter.com/library/JournalArticle.asp?Article_ID=601981

I hope you find some relief soon.

[Susan61]

Hi Penny:  So sorry to hear your getting worse with your pain, and it does not sound like its your medication.  I hope they can find out what is going on with you real soon.  I certainly will keep you in prayer.  Keep us updated, and you know  you can always get the support you need from all of us.

This might not have anything to do with your CML.  You need a good specialist to find out where this pain is coming from.

Take Care and God Bless

Susan