Now that I have done the obligatory tests, making certain that there is no underlying cause for my pain, I am curious to see just what the next step is. I am guessing that it will be “suck it up” as there are not too many alternatives. I emailed my oncologist, today.
My oncologist really thought that I had a pinched nerve in my wrists or spine, and that that was the source of my pain. He really felt that my pain should not have come on, this late in the stage of my treatment. He claims that he has never seen hand numbness and pain, due to Sprycel, and that the musculoskeletal pain should have shown up right from the beginning, not two and a half years down the road.
Sometimes dealing with medical professionals really makes me want to scream. I knew in my heart of hearts that the Sprycel was the root of my pain. To me it was so obvious; the pain was there when I took the medication and went away when I did not; but not being the “professional” I figured that I had better do as advised, and make sure that there was no underlying “issues.”
I was not sure what I hoped the results would be. If there was an underlying cause then MAYBE the pain could be addressed and alleviated. That would be a good thing; despite the fact that it would mean that there really was something wrong. But if there wasn’t anything wrong, it simply meant that I was just going to have to live with the pain, as I cannot live without my medication.
This pain is unlike any other pain that I have ever experienced. It is not like a pulled muscle or a bruise from an injury. The musculoskeletal bone pain is a pain that is seated deep in my bones and joints; it feels much like a toothache where my bones themselves, just ache. This often causes my hip joints to ache, as well. It is interesting because this pain is asymmetrical, and it travels. Oddly enough, the most consistent way that it seems to travel, is when it gets so bad, I finally get to a point that I take a Sprycel break. It usually takes two to three days for the pain to completely go away, and then, a few days after resuming the Sprycel, the pain generally finds a new area in which to set up shop.
The peripheral neuropathy, or nerve pain, is even worse! It is a pain that I can only describe as excruciating. It typically is located in my feet; how weird is that? It feels like someone has sliced off the top layer of the skin on the balls of my feet, or my heels; exposed the nerves and then is constantly blowing on them. It totally sucks and doesn’t do much for my dancing!
The muscle pain is interesting; it isn't like a “pulled” muscle where when you move, it hurts. It is more like a searing pain that sometimes pulses and sometimes cramps. The cramps seem to tighten in my back and just stay contracted. Once the muscles become inflamed, it seems as though they just stay that way. Occasionally they travel, too.
The manner in which I have been attempting to control these pain issues is by using Voltaren Gel, a topical, nonsteroidal anti-inflammatory drug, sparingly. I attempt to use it only when I am desperate as I do not like to take any unnecessary medication, but maybe if I used it consistently, I would have better results? I may experiment with this.
I also take Baclofen when my muscle spasm are acute, and use Lidocaine patches when I can no longer stand the pain, or am going dancing. I suppose that there is one part of me that worries that if I use these “tools” on a regular basis, that they may not be effective, when I really need them.
I do not want to take narcotic pain relievers and too many over the counter pain meds are not good for us either; I figure that my kidneys and liver need all of their strength in order to deal with my toxic, daily chemo pill, and I do not want to tax them with additional medication.
So, what is the answer? I do not know, but I would love to hear what you do, to deal with your pain. I will likely continue to search for an answer and hope to make a loud enough noise that the researchers will address this issue while they are coming up with the next, new, latest and most improved TKI!
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