This visit is to discuss my persistent pleural effusion which is a side effect of the medication Sprycel, that I take to control my chronic mylogenous leukemia. I have recently had two thoracentesis; seven weeks apart. The first resulted in removal of 1.8 leters of fluid, and the second one removed 1.5 liters of fluid from my left lung.
The reason for this visit, is that despite just having all of that fluid removed, it is has returned returned, just one week down the road.
For the first time, I have a clearer understanding "why" this may be happening. Of course, we know that Sprycel is a main contributor, but I have been off of Sprycel for a one week period, during this time; so this is not likely the cause.
The doctor explained to me, that your lung is inside a sac, the pleural sac, and between your lung and this sac is fluid. This fluid is continually refreshing itself through valve-like mechanisms in your pleural sac; kind of like intake and outtake valves; in with the new, out with the old. This fluid acts like a lubricant between your lung and the pleural sac.
So, here is one scenario that could be the cause for pleural effusion; Sprycel messes with the actual mechanics of the valve; leaving it on the on position too long, or keeping the "out" valve from releasing the fluid.
Here is the second scenario, and more likely my personal issue. Since I have had this fluid build up, off and on during the past five years, (possibly due to the valve theory) my left lung has been scrunched up inside of the pleural sac. Because I was so adept at adapting, I never realized how scrunched up, and for what length of time, my lung was actually scrunched up there.
It is possible that during the time it was/is all scrunched up, that a fibrous coating of material has
formed on my lower lung, preventing it from fully inflating, even when the fluid is removed. My understanding is that something, must always fill that pleural space, and if the lung does not drop back into that space by re-inflating, when the fluid is removed, then the fluid will build back up, in order to fill the space.
You follow me so far?
Of course, the next question is, what do they do if this is the case? The answer, unfortunately does not sound fun; the doctor refers to this fibrous material as a "rind" and in order to "fix" the problem, surgery is required to "peel" the "rind" from the bottom of the lung; thus allowing it to fully re-inflate.The doctor and I also discussed the possibility of have a pleuradesis performed "if" I have to have surgery to remove the peel. This is a procedure that would be done at the same time and involves irritating the outside of the lung either manually, by "scratching" the surface, or by putting in a talc to cause irritation.
The goal of this procedure is to cause the lung to form scar tissue and adhere to the pleural sac, thus eliminating the void where the fluid collects.
My questions are that if the fluid cannot go into the left pleural space, will it them collect in the right pleural space, or the sac around my heart; the pulmonologist said, "Not necessarily." However, this is something I will discuss with my oncologist, as it does concern me.
He said that I should seriously consider this as a viable option, as we know that Sprycel does work in controlling my CML, while allowing me a decent quality of life, with the exception of the pleural effusion; if the procedure was successful, I could carry on with Sprycel, without skipping a beat, if this side effect could be resolved through this surgery.
All food for thought. Fear of the unknown and elimination of something that I know works in controlling my CML, all play into my thought process. The "What ifs?" will be coming out in full force and there is much to consider.
None of this will be resolved prior to my trip, but I hope to have a clear picture of what I am going to be facing when I return.
Now, I am off for a CT Scan, with a referral to a pulmonary surgeon.
And the beat goes on!
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