28 replies to this topic

[nathaliece]

Hi,

I was dx 11/10 and pcru in 3/12 and take 400mg Gleevec.  This morning when I woke up my hands and fingers were numb.  After waiting about 5 hours, it did not improve so I called my oncologist to see if this was a side effect of the Gleevec.  He did not believe it was an sent me to my primary for an MRI of my cervical spine, believing it might be a pinched nerve.  My primary disagrees and thinks that it would not be a pinched nerve since both hands are numb.  He tested for a B12 deficiency and believes the Gleevec could have been the culprit.

Has anyone had this experience and can share information?  The numbness has continued for about 12 hours without letting up.

Thanks,
Nat

[sferrazza]

Hi Nat,

I was diagnosed 3/10 with cml and put on Gleevec, I had numb hands, fingers and sometimes my face a lot while on Gleevec.  I'm currently on Tasigna and don't have that issue but other weird side effects.

Susan

[Happycat]

Nat,

Hasn't happened to me (well, it does sorta but that's related to a whiplash injury I had before gleevec).

However, someone posted about having raynaud's disease (reynauds?) after taking gleevec, or else they had it before and gleevec made it worse. I can't remember if that was only coldness in hands or had some numbness, too. Try searching the posts on this board for reynauds (or however you spell it).

Traci

[Trey]

Peripheral neuropathy has been reported as a side effect of TKI drugs.  Sprycel seems to be most likely to cause it, but Gleevec can also cause it.  It should be temporary.  If not, pursue the issue further with your GP doc.

[hannibellemo]

Hi, Nat,

There have been more extensive discussions on peripheral neuropathy on the www.newcmldrug.com site. What was recommended to me was taking 200-400 mg. of alpha lipoic acid (ALA) daily. This is used by some diabetics for PN. It does not work for everyone but if it is going to work for you you should know within 3 weeks. I got this approved by my doctor and he suggested I not take it longer than 3 months at a time. I've never had to take it for that long. I've done two courses of it and have not needed it at all for 18 months.  This is not readily available everywhere, but I did find that Walgreen's kept it on their shelves.

I experienced the "pins and needles" in my feet on both Gleevec and Sprycel.

Pat

[Susan61]

Hi:  The feeling your getting can be caused by so many things.  Its very common in people with Diabetes like Pat mentioned.  Have you had your Glucose checked, or maybe you are Diabetic?  I do have Diabetes,and I get the numbness in my  hands at different times.  Not real bad, but I do get it.  My  mother is Diabetic, and she gets the numbness or sometimes real bad pain in the hands.   To have that numbness for 12 hours does seem extreme.

I hope you find out where its coming from.

[nathaliece]

Susan, I am not diabetic and have never had this before.  I thought it odd to develop a new side effect after being on Gleevec for 18 months.  The nurse at my oncologist's office said it has been her experience that many CML patients on Gleevec develop more side effects the longer they are on Gleevec.  (Not good news to my ears!)  Pat, thanks for your suggestion.  I will visit with my oncologist at my next appointment.  I am still waiting to hear about the B12 test and the MRI.   Two of my fingers on each hand are still numb today so it has not gone away completely in a day and half.

[Susan61]

HI:  I am glad  your not Diabetic, it just adds to my list of ailments to deal with.  These TKI drugs have so many side effects, and sometimes they are so severe that you have to get switched to another drug.  I hope this is not your case.

With me being on Gleevec for a very long time, I cannot say that I developed anything new to add to my list of side effects.  In my case, I think I learned to just live with them because I was glad that the Gleevec was doing its job, and they were not that severe that I could not tolerate them either.

You did remind me that I need to have my B-12 level rechecked.  I am long overdo, and I have a tendency to run low on my B-12 as well as my Vitamin D.  I hope you get some answers from your MRI also.

[pammartin]

I had pretty severe numbness when I first began the Sprycel, as the weeks went by it kept getting less and less, 6 months into taking the drug I now occasionally have a reoccurrence, but they are not severe and do not last long.  Seems to usually happen when I am driving, not sure if it is because of the way I am sitting or holding the steering wheel.  Best of luck!

[Teresabourgeois]

It could be raynards.  I 've had Raynards for years but it got worse since CML.  my Doctor put me on a vasodilator pill.  It helps but I also wear compression gloves. 

[Happycat]

Pam, 

My whiplash injury affects me when I drive, or anytime when I am essentially reaching out in front of me for prolonged periods. It helps to provide support, so see if using the armrests, or placing your hands at bottom of the wheel and resting your arms on your lap helps.  I must have support or else I get tingly and a numbness that feels like water running down my arm.

Traci

[pammartin]

Traci,

Hey that is exactly what I have (minus the whiplash)  I guess mine is Sprycel-lash.  Thanks for the tip, it doesn't happen that often but when it does it is darned uncomfortable.

Pam

[pamsouth]

Nathaliece.

I truly don't believe it has anything to do with Gleevec.  I have been on Gleevec since 2005!

Way back in the early 1990's I went to a doctor with the same thing you are talking about, and the doctor mentioned the Raynaulds, however you spell it.  I had quit smoking way back in March of 1989.  Which is a good thing as it constricts the blood vessels.

However a few years ago I went to a seminar by an arthritis doctor.  I asked him the same question about the hands and fingers.  Especially some of the fingers turning white when they get chilled, mainly in the winter, or while holding something cold. Then to warm them, putting them in warm water and they turn sort of a purple. It was strange, as he didn't know I had CML, he said that was a sign of an immune disease.

The doctor at MdAnderson told me that CML had been working on me long before diagnosed.  I think we are predisposition to certain things with certain environmental factors.

I read an article sometimes ago that sometimes the blood in the fingers actually gel, and you need to thaw them in lukewarm water not hot.  It is not that the blood is constricted. Therefore, if that theory were true, I would rule out Raynaulds.  Actually I don't know the true cause.  I do know I had this problem long... before.... Gleevec!!!  Even if you were to go to a drug, you would just be trading one daemon for another demon, they are all toxic!

I bet you will find a lot of people on this board who had immune disorders long before TKI's.  I would blame it on the CML before I would blame it on the drugs. Not that drugs don't have their own nightmarish side effects.

Right now I am dealing with tendentious in the left arm and hand.  I go to a chiropractor and do physical therapy. I alternate between cold packs and hot wax treatments.

I Don't think it is the Gleevec.

PamSouth

[Pin]

Hi guys, I've been experiencing some numbness and tingling in my hands, mostly down the outside of my fingers where my pinkies are. My hands have also been going completely numb overnight (must be compressing them). Has anyone had this happen recently that can share some advice?

I've also just been recovering from a gastro bug as well, so it feels as though they are related (it might not be). I am wondering if it caused some mineral deficiencies. Also worried about GBS, but it started during the illness so I think this is not likely.

Urgh, what a week!

[Sneezy12]

Check Carpal Tunnel Syndrome on the Mayo Clinic website. Frank

[Marnie]

Hi, Pin. ..

 

this summer I had the same problem with hands falling asleep at night.  I agree with the carpal tunnel.  Find some exercises.   Also some wrist braces to wear at night work wonders.  It keeps your hands from curling in, which is a classic sign of carpal tunnel.

[mdszj]

I take sprycel 100 and whenever I wake up I usually have some numbness in my fingers, mostly left hand but sometimes right hand.  As soon as I shake my hands or move around it goes away.  I went to a neurologist who tested me with some electrodes stuck in my hands and he said that everything is ok.  I have had this for at least a year.  I told my hemo about it but I dont think he really believes it has anything to do with the TKI.  BTW I also take synthroid for hypothyroid condition.

[Jerry.s]

Yeah I been feeling the same thing in my fingers and my feet, yesterday I had some crazy cramps in my feet.  My doctor thinks in Carpel tunnel in my hands but I never had a issue until i started Gleevec.

[Pin]

Thanks guys, I feel like I am going crazy with this pins and needles in my hands, it has improved a tiny bit, but it is not going away. Maybe I have PN now, I don't know.

Can anyone share some advice, or hope that this might go away. I'm not sure what to do

[gerry]

I've had the numbness first in my right ankle (while on Gleevec) and then in my left ankle after 11 months of stopping. I didn't get pins and needles, just lost sensation of my ankle. Got so bad that I wound up hurting my thigh muscle as I would keep it rigid, so I could tell where my ankle was. I found accupuncture worked.

When it happened again just recently in the left ankle i went straight to an accupuncturist, got sensation back after a couple of retreatments.

I hadn't thought it might be PN related until i read one of Trey's comments recently. Googled it and PN is a side effect for some poeple on Gleevec.