For a couple of years, the strategy has been to combine regular as needed red cell transfusions. That will not change.
However, a natural consequence of this strategy is build up of iron in the body. We have tried to counter that with chelation agents, first with oral drugs and then most recently for just a few weeks, through sub-cutaneous injections delivered overnight by pump.
Unfortunately, that has not been working to control the iron levels, but my creatinine has been going up.
Since something seems to be impacting appetite, nausea, energy, etc, (hence the “new normal”) we are seeing what happens if we stop the chelation, and let the iron take care of itself, hopefully recucing the creatinine. I have also stopped taking the ritalin, in case that was suppressing appetite.
I think I may be feeling a bit better, but it is likely to take some time to take full effect. There is no doubt that I am much ore passive, much more reactive rather than pro-active, and much more exhausted after activity.
My weight is down to 140 pounds, and my oncologist thinks that the largest impact on the quantity of my life is likely to getting that number up higher. My current life expectancy is roughly estimated to be less than three years. So be it. I am already way ahead of the original estimates.
The candor about my situation is NOT a request to leave me alone. Far from it.
P.S. On a more positive note, it was very nice how happy all my nurses were about the failure of the healthcare repeal effort.