Hi, I have MDS RAEB-2. I was diagnosed in May 2015 with a blast count in my bone marrow of 11. After a round of Dacogen, it had gone up to 13. While waiting to start a second round of Dacogen, the blast count in my bone marrow went up to 19. So, instead of treating me with more Dacogen, they used a high dose AML induction regimen. I had 5 days of Ara-C and Fludarabine in combination, starting Friday August 14th. They wanted to use Ara-C and daunorubicin but couldn’t because of worry about my heart which has developed a severe arrhythmia.
I am now in the NADIR phase of recovery from the chemo and I have severe neutropenia. My oncologist is a firm believer that I am safer at home with these counts, unless I get an infection. So I have in home nursing care twice a day to draw blood each morning and give me all the medications I need. The only reason I have to go to the hospital is if I get an infection, my heart goes haywire or for red and platelet transfusions. So far I am infection free, thankfully.
I am also down to 20% kidney function. At 15%, I will start dialysis. They can’t say if the kidney damage will be permanent or not, so it may be temporarily dialysis and it may be for life.
I find it a daily struggle to keep going, as it seems that I take one step forward and then 2 steps back. I still have side effects from chemo and am unable to eat much (I’ve lost 26 lbs since May). And I have a lot of bone pain from the disease, but have had to be pulled off morphine due to the kidneys. The only safe choice for the kidneys is fentanyl which is stronger than morphine and I refuse to take it, so I’ve reduced back to tramadol which doesn’t really do the trick.
There is talk of a SCT in my future, but for now, am just waiting to see how effective the chemo was on the MDS.
.
