The doctor was very pleased with my progress on my last visit on March 18. I have been on Prednisone and Mycophenolate for the past couple months to combat GVHD in my liver. The ALT numbers have gone down from a high in the 1500’s to around 140’s now which is getting close to the normal numbers of below 50. So given that, we have been tapering down the Prednisone drug since it has soo many side affects. First we went down from 120mg to 80mg, and in the last week have gone down from 80mg to 60mg. This last taper down has introduced the most fatigue ever, including a lot of thirst and extremely high glucose levels. Sometimes I even have the stiff limbs going to the point where I am doing a little Frankenstein walk!
So for now, a lot of rest and hopefully within the next week get readjusted to the new dosage. Then of course it will change again, but the sooner I can wean myself off this medication, the better.
No more weekly lab work, now we are down to about once a month visits. On April 15, I will have another Bone Marrow Biopsy. Officially, the doctor says I should tell people I am “In Remission” as almost everybody knows the gold standard for being declared “cured” from cancer is when you are cancer free for five years.
One last thing, looks like me and Susan will be going to Cleveland in June for an MDS Patient Conference. Conferences like these are held all over country and patients get to attend free of charge. It’s a chance to mingle with other people with disease and hear about latest treatment options. I was hoping to catch a Cardinal Baseball game but they will be in Washington, DC and right now doesn’t look like we would be able to get the extra time in to drive over to DC from Cleveland.
Spring has sprung!