Guess what was waiting for me when we arrived home from Europe? No, it was not a ticket to go back...boo. It was my PCR blood collection kit, meaning I had better get my bum down to town to have my chest x-rayed, and my blood drawn; I am holding out high hopes that all of the holy water which I doused myself in, while in Europe, either cured me, or held my leukemia at bay.
Over the past four months, I have been off of Sprycel for two, two weeks stretches, with a lowering regiment of 140 mg of Sprycel, two days on, one day off vs 140 mg of Sprycel five days a week; these results will be interesting, and prayerfully good. I will have to wait approximately two weeks for the results,
The chest x-ray, on the other hand, I will be able to get a glimpse of, right after they take it, and will have "real" results, within a day. I pretty much know what they will be!
A quick look at my chest x-ray tells me that I will be needing another thoracentesis; no surprise, but as usual, not really looking forward to the procedure.
I have no doubt become quite adept at functioning with a moderate pleural effusion. I pretty much knew it accompanied me throughout Europe, yet it did not slow me down; much. Neuropathic pain in my feet and legs, along with fatigue did, but I believe that I have become accustomed to breathing without the full capacity of my left lung.
I find it interesting that thus far, only my left lung is affected; for this I am truly grateful! I know many wonder why I do not jump the Sprycel ship, but it is really difficult for me to abandon something that is controlling my CML so well, with only one "major " side effect.
The detriment to being in CML support groups is that you see all of the negative side effects of other CML patients, on other drugs, and when I compare what I go through on Sprycel, to what they live with, on other TKI's, I consider myself fortunate.
I know that at some point, I will hit the wall, and be willing to try something else; but I am not there, yet. The current, next drug of choice, seems to be Bosulif. Of course, hearing and reading all of the side effects that people suffer, does not have me eagerly anticipating this change. It took me a good four years, to adjust completely to Sprycel, and to feel good enough to take our trip to Europe; and I want to go back!
I do not want to spend another three, four or five year period adjusting to a new drug.
I work closely with a pulmonologist, who has on more than one occasion, has said, "As long as you are comfortable, and able to live life in an acceptable manner, why change what is working and controlling your CML?" I suppose that I agree with his thought process.
It seems that I always reassess my options after a thoracentesis, so I guess that we shall see.
For now, I am anxiously awaiting the results of my PCR blood draw, and scheduling a thoracentesis.
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