Ongoing Fatigue, Exhaustion and Malaise with Leukemia and Sprycel

I've written about the fatigue before. It just seems never-ending. I approached my oncologist about this issue, but she denied it had anything to do with my leukemia, since it is technically "in remission".

My sister and I having breakfast together.
I was too tired to eat.
After many months (over a year) of going off various medications I had been taking to test the theory that it must be one of them that was causing my fatigue, I proved to myself that they were not the cause. After joining an online support group for people with CML located in Facebook (great group of wonderful people by the way), I learned that I am not the only one with this issue and in fact, like the drug company representative I spoke with previously, it is a common side effect of not only Sprycel, but also, Gleevec and Tasigna.

So, first thing I did was to find myself another oncologist who was not associated with the clinic where I had seen the two previous ones. She is local and was accommodating in discussing with me my desire to go off Sprycel. We made an agreement that I would go off slowly and see if it made any difference. If my fatigue level decreases, I might decide to stay on it. But, I know there are quite a few people who haven't taken any TKI's for years and their CML has not returned.

After appropriate blood test results came in satisfactory for the doctor, she lowered my dosage from 100 mg. Sprycel daily, down to 70 mg. I've now been taking that amount for about a month. Truly, so far, I have not noticed much difference.

When I say fatigue, I'm not just talking about being tired. The way I experience is is like when you have the flu but you have to get up and go to work or school or take care of the kids anyway. You feel like hell, you are dragging yourself as though you have a 50 pound weight on your back and you feel like you haven't slept in days. This is compounded by the fact that I easily get nauseated. Not vomiting nauseated, but green around the gills.

It feels like if I don't lie down "THIS MINUTE" I will faint.

And that is exactly what I do. I go lie down. After a while I might feel a little better and get up again. But, continue to drag through the day. This is the quality of my life presently.

Anybody who says that CML is the "Lucky, Easy" cancer needs to be sleep deprived and given the flu bug, then forced to walk five miles in downtown's busiest time of day while the weather is miserable!!!

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