Monday, March 31, 2014

CML Hands; What the Heck?

I know that I wrote about CML hands yesterday; but today I am not only frustrated with my own hands, I am frustrated with the fact that there are SO MANY others that are also suffering with the same side effect.
I have been on Sprycel for a little over three years and have suffered a gamut of side effects; they seem to travel and to rotate; some days it is musculoskeletal pain, other days it is fatigue and nausea; I have even had pleural effusion. Fortunately, there are some days that I have very few side effects at all; these are the ones that I live for!

The frustrating phenomenon that currently has me frazzled, is the overwhelming outcry in our CML groups and forums, of so many others, experiencing the same thing; hands that are so numb and painful at night that they keep you awake, weak, clumsy hands that ache all day, a burning and tingling feeling that does not subside, and the constant “wringing” of our hands, attempting to alleviate these symptoms. Plain and simple; our hands do not work, and cause nothing but pain.

What I want to know is “why”; all of a sudden there is a plethora of CML peeps with this particular side effect. Every single day there are more and more people complaining about their hands. For me, this started about three to four months ago, but the pain has escalated. I have seen a neurologist and had an MRI; a one or two day Sprycel break used to stop the pain temporarily, but now it seems as though the break has to be longer, and the pain does not subside completely.

What I find most curious about all of this is that these side effects seem to change; I have speculated before, that maybe the cause of the changing side effects, is linked to specific “batches” of medication.  Maybe the latest batch is the culprit. This led me to call Bristol-Myers Squibb:

To report an Adverse Event or Product Quality Complaint, please contact us at:
AE/PQC: 1-800-721-5072

I spoke with Natalie and told her about my side effects, as well as all of yours. She took tons of information and said that she would pass the information on to the “Adverse Event” people, as well as the “Quality Control” people.

I do not expect much to come of this, but I figured that it couldn't hurt. Just imagine if the actual manufacturers added too much of something, or not enough of something else, or changed an ingredient and that was the cause of our pain. Imagine if they could fix it! Wouldn't that be so COOL?

My current Bottle of Sprycel is 70 mg, 60 tablets.
The Lot # is 3J75329C.
The expiration date is September 2016.
The NDC number, found on the front of the bottle is NDC 0003-0524-11

If you are experiencing numb painful hands and are on Sprycel, please consider leaving your name and the above information on your Sprycel bottle, in the comment section below; if you are uncomfortable leaving your name, then the other information is probably good enough. It will be interesting to see whether or not any of us share the same Lot number!

Something has got to give as I am exhausted! I actually dread going to bed because it is so much worse at night; I cannot sleep and when I do, I wake up with my hands so numb that I am actually fearful of breaking a finger by getting it caught up in the sheets and moving my hand and not feeling that my finger is caught; it is crazy!

I understand that living with cancer isn't necessarily "easy" but is it too much to ask for a treatment that doesn't make you miserable?


Here’s to better “hand” days! 

1 comment:

  1. I am so sorry you are going through this, Michele. I, too, have numb hands and arms, but I am on Gleevec. After 6 months of enduring this and seeing many different specialists who were all bent on finding some autoimmune side effect from long-term use of Gleevec (15 years), it was discovered through an MRI that two discs in my neck were severely compressing my spinal cord and causing the problem. Cervical spine surgery was the only answer as my spinal cord was about to be cut in half, so that's what I had last November. Boy, that was quite a thing to recover from! I'm just now feeling close to normal - except that I still have numbness in my hands, although it is better. The doc says it might take up to a year to get the feeling back. Anyway, I know what it's like to deal with this. And want to send my best wishes for answers.

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Bricks for the Brave!!