As many of you probably remember, this past year has been no picnic! It has been filled with pain; I have had extreme pain in my back, the bottoms of my feet and in my hands. That pain sent me for an MRI and a visit with a neurologist for tons of testing; all results led to the fact that the source of my pain stemmed from side effects of Sprycel, which was no surprise to me.
Because of the pain, and two negative PCR’s my oncologist and I felt that a medication reduction was a viable option to see whether or not the reduction would reduce the pain while holding the CML at bay. Unfortunately the pain continued and my PCR rose; it went from 0% to .432%, to .468% in a short period of time. This resulted in an increase of my Sprycel dosage, which resulted in a better PCR of .132%.
This made me very happy, however, the party was short lived. Four weeks later my PCR crept up again to .236%. So, needless to say the roller coaster ride continues; I have recently reached the highest recommended dose of Sprycel , of 140 mg, seven days a week.
Here is the kicker! I was petrified to increase my dose of Sprycel anticipating that my pain was going to sky rocket out of control. I did not know if I would be able to handle any more pain. Guess what? After just two doses of 140mg, my pain began to subside; I gingerly continued to swallow my 140 mg tablets before bed, waking curiously, wondering whether I would be wracked with pain, or pain free.
It has now been a little over five weeks on this high dose of Sprycel and I am here to say that my pain is almost completely gone. I have not been this pain free in years, and am thrilled that there is a silver lining in my current state. I can now walk and dance, bend over and my hands are no longer falling asleep and waking me up throbbing, in the night! I am in heaven!
I find this very interesting, I was in tons MORE pain on a lower dose; I fought to lower my dose because I thought that a lower dose would mean less pain, as it turns out, it is exactly the opposite; higher dose = less pain: Go figure!
Now, if I can just hold the pleural effusion at bay and get my PCR under control without damaging my internal organs, I will be dancing at the Light the Night Walk on October 2nd, 2014!
Keeping my fingers crossed for an excellent PCR; it will be drawn in two weeks!
Wonders never cease to amaze me….