I didn't have CML drugs, but rather AML drugs and have had numb toes and forefeet for 5+ years.  Initially it started with an induction round of chemo which landed me in the ICU.  When I came out, 3 weeks later, I had numb feet.  A neurologist (who didn't know much about  cancer side effects) pronounced it as Critical Illness Myopathy and said it would either go away within 18 months or else be with me forever most likely.  My oncologist hadn't seen this side effect prior, so went with the neurologist's evaluation.  Initially I had sharp, shooting pains in my feet and legs which were treated effectively with Neurontin.  I no longer have pains.  Just very cold, numb feet.  I got no guidance on the problem during transplant.  Later, I saw a podiatrist who sees cancer patients and he said that there are some chemo drugs that can cause this.  My guess is that I had one of them.  You might want to google the drugs you've had and add "peripheral neuropathy" to the search and see if anything comes up.  It's been so long, I don't recall what the meds were, but I definitely had one or 2 that can cause this side effect.  Other than it effecting my balance a bit, it hasn't caused me any real problems.  I just try to wear supportive shoes, avoid going barefooted (drat!) and keep moving.  I guess my career as a ballerina is not going to happen!  Best of luck. Let us know if you find out anything further.

Numbness in fingers and toes is listed as a "more common" side effect of Sprycel.  See side effects chart below:

http://cancercare.on.ca/common/pages/UserFile.aspx?fileId=11266

By the way, it says: "May return to normal after treatment."  Huh???

Health care people are taught to love Tylenol.  But it is hard on the liver, so we should avoid it.  Motrin and Naproxin are generally better for those who take other drugs that make the liver work harder.

I have had neuropathy for 5 yrs. & go to a neurologist that specializes in neuropathy. I was checked for all the normal causes for neuropathy ie. diabetes, alcoholism, certain cancers-I cannot for the life of me remember the names of them. I had the neuropathy for 3 yrs. before I was diagnosed with the CML, so it wasn't from the Gleevec I take for that. The neurologist can only find 1 thing that could have caused the neuropathy-the CML. The Onc Doc said he thought I probobly had CML for about 3 yrs. before they caught it. He had no idea that the Neurologist said that the CML was probobly the reason I had the neuropathy & that I had that for 3 years. So who really knows-I just know that it's not from my CML med's. Doesn't mean that yours couldn't be from your CML med's. I do know that certain kinds of cancer therapies do cause neuropathy-but it's not ususally the targeted therapies-it's the kind of chemo that kills not only just the cancer but even the good cells.

My neuropathy spread from my toes to just under my knee's. I also have it in my hands-mostly just from the first knuckle up. But they do tend to get cramped up when I type or rake ect. It seems to have stopped spreading in the last couple of yrs. But I still have pain. I take neurontin which helps with the pain. I walk like a drunk, and have had a few falls and broken toes. I even have had some gigantic slivers in the bottoms of my feet! I find if I exercise like walking on a treadmill or riding the recombant bike helps with my walking. I can't stand on my feet for very long before they really cause me pain or if they get to cold or to hot. It's hard to know whether they are to cold or hot because you cannot feel it-you just feel pain like swelling & like needles poking you & matches burning you. Strange! Hope everything works out with you & it doesn't get any worse. Going to a neurologist that knows about neuropathy (not all do, just like Onc Doc's and CML) can help out with it. Run the right tests and such, put you on the right med's. Outside of that not much can be done about it unless it is caught early & if it is because of med's maybe they can change them. You never know? Good Luck!!!!!     jill

Tom,

Never give up.  New discoveries happen every day - particularly in neurochemical transmission pathways...

Scientific American had an article in the November issue, "New Culprits in Chronic Pain" by R Douglas Fields.  The article identifies hyperactive glial cells as responsible for chronic pain. These cells release glial factor chemicals and cytokines in response to large amounts of neurotransmitters at nerve junctions which are themselves produced by the neurons in order to transmit a message of pain.  Glial factor chemicals reduce neural inhibitory forces or stimulate neurons allowing the cells to fire more easily.  Cytokines produce an inflammatory response that helps mobilize the immune system to repair and heal the damage (that the neuron was reporting as pain to start with).  Because of this enhanced pain transmission ability, the endorphin pain suppression pathway is overloaded, and increased opiate dosage is needed to relieve the pain.  Since this opiate tolerance can lead to addiction, control of the glial enhancement effect is an important discovery.  An example of the overcompensating inflammatory response of cytokines is observable in the large area of swelling and redness surrounding a very small area of actual injury caused by a splinter.  The excessive inflammation response is thought to be the body's way of making us leave an injured area alone so that it will heal properly. 

Several drugs are being investigated to exploit this new understanding.  One takes advantage of the fact that endorphin site suppression by glial factor chemicals can be bypassed by enhancing a cannabinoid neural pathway that also suppresses pain.  Other drugs are being tested that suppress activity of microglial cells and astrocytes that produce the neurochemicals that cause certain types of neuropathy and other chronic pain. 

I hope the neurologist has good news for you!

Doug

Jill, let me ask for clarification... are you saying that the Neurologist told you that CML 'was' causing some of your

neuropathy symptoms? I ask because since being diagnosed with CML in early Oct. I've noticed a slight increase in

what was a 'arthritic' based neuropathy into my hands. I can alleviate it with a bit of Ibuprofen and inversion traction

but it does come back... Thanks .

Doc