I swear the road that we must travel when living with chronic mylogenous leukemia is often a bumpy ride. It seems as though I just got my pleural effusion episode under control, and now I am facing another new Sprycel challenge.
I do believe that the level of Sprycel absorption, due to the taking it with Bragg’s Vinegar, has caused my symptoms to become exasperated. While this is a great thing for my PCR, it is not such a great thing for my side effects. My last PCR, in April was negative. At that time, I developed pleural effusion and was forced to take a three week Sprycel vacation. The PE resolved on its’ own, my Sprycel dosage was lowered and it has not returned.
This is all good news, right? Well, yes and no…….yes, because the PE has not returned, no because I am now plagued with muscle spasms and musculoskeletal pain. This began gradually after resuming 100 mg of Sprycel, 7 days a week. At first it was just random back spasms, these were managed with Voltaren Gel, occasional Baclofen (10mg), and wearing a back support.
As the weeks went by, the spasms became more frequent and I began to experience pain up my spine and in my hips. This pain continued to radiate to my ribs and my back pain became so severe that I could not bend forward, at all. It was becoming extremely difficult to get dressed; especially putting on my shoes! I was, however, able to continue to dance, a bit, as long as there were no ducks and the music was not too fast! Lol It really was hysterical, I would dance and then hobble off of the dance floor; adrenaline, and doing something you love, are certainly Godsends!
After nearly four weeks of continual, increasing pain, I had had enough. I really began to wonder whether or not Sprycel was the true culprit of my pain, or if there was some other cause. Saturday night, I made the conscious decision to refrain from taking my nightly dose of Sprycel. This is a BIG deal for me; I NEVER miss a dose unless I have some sort of “lung” issue that forces me to take a Sprycel vacation. So, to simply skip a dose, is totally out of character, for me; but I was in so much pain that I could not help myself.
I went to bed feeling a bit guilty, in some ways hoping it WAS the Sprycel and in other ways, hoping that it was not. I awoke the next morning and stretched; the first thing that I noticed was that I did not experience the sharp pain in my back, which I had become so accustomed to. I cautiously got out bed and “thought” I felt better; as the day went on, I definitely was in less pain, yet still not convinced; so I decided to skip one more night of medication, and to email my doctor, letting him know what I was doing.
His initial response was that he did not think that it was Sprycel caused, but to continue with my experiment and to keep him informed; he thought that it was a good plan. Day two I was in even less pain and was able to begin to bend forward again, I decided to go for broke and skipped the Sprycel for a third day, in a row, promising myself that no matter what, I would resume the Sprycel, on day four.
On my third vacation day I was literally jumping for joy! I was absolutely giddy and my pain level had decreased by at least 90%; I told my husband to look out on the dance floor that night, because I was feeling GOOD! Not only pain wise, but energy wise, too. We literally danced from 5 pm until almost midnight last night, and today I am still walking; despite resuming Sprycel.
Yesterday was one great day, it was even better than Christmas! I cannot remember the last time that I felt that good; today is going to be bitter sweet, I must return to the battle and hope to conquer this new challenge. I will relish and remember yesterday and hope that the pain will return slowly and not just hit me, all at once.
Conclusion: Sprycel is the cause of my musculoskeletal pain. I will be discussing this further with my oncologist during my December appointment. My theory is that I am going to be negative PCR, and will be able to remain there, on a lower dose of Sprycel.
Until then, I shall continue to manage my pain and keep my fingers crossed.
i experience the same back spasms on Sprycel as well. I have had CML for over nine years. so I understand well trying to figure out our symptoms on our own. I told my oncologist the back pain was also related to Sprycel. He has shared that info with other paitents.ReplyDelete
Thanks for sharing Scottie, it totally sucks! lolDelete
Michelle.....you might try 20mgs/day instead of 2-4 day vacations from 100mgs. That has worked for me and is being monitored by MDAnderson. TomReplyDelete
Tom, that sounds like a plan; I will talk to my oncologist when I see him in December.ReplyDelete