Medical Update. A joyous one!

I had my UCSF appointment 10/27 and it was a “remarkable one” There is a bit of nervousness always as things for 5 months have only been rising (cell counts) and increasing in size - (spleen and liver) and increasing discomfort.

However on my appointment before this one my cell count had dropped from 26,000 to 23,000 ( which is unusual, as proliferative diseases usually only rise) and this count too was also 23,000 – no rise is a good thing. Dr. says it may be part of a sin wave phenomenon, the white cells rise- rise, then fall - soon to rise again. I think not, I believe/hope it will start falling. However the “remarkable” part of my appointment is that my spleen which has been “very” large (2 and a half fingers out with easy detection) (splenomegaly) and tender with all the problems associated with that is now nearly undetectable, and just slightly enlarged (he had to really “try “ to find it,, and my liver which has been quite enlarged ( heptomegaly) 3 fingers out and distended ( a physical exam terminology) is now not enlarged.

The spleen, I was told, would not reduce without hydroxeyurea or radiation as the proliferation and bone marrow scarring causing it to not only clear out all the proliferative cell death but produce cells that were not being made in the marrow due to the fibrosis and hypercellularity..

So in simple terms – I have seen a regression of symptoms, my abdomen is not distended as it was (looking and feeling three months pregnant) My spleen is smaller, my liver is smaller, my energy level is high (4 months ago I was taking naps every afternoon) the color of my skin is good, my red cell count is high ( no transfusions necessary!) And I am not uncomfortable when I eat anymore. These things are huge, especially for a progressive disease that was progressing. Normally I see either UCSF or my oncologist here once a month,. The Dr. said no need for three more months, and to continue do what I have been doing as it appears to be working. (He said this with a doctor’s caution) I intend to show them a spontaneous remission. A lot to hope for but I believe in the treatments I am doing and I believe it is possible.

For my treatments see – How am I doing/feeling October 28