Friday, April 21, 2017

argh

I met with the doc today. I have 3 bad things happening in my blood that are possibly keeping the MDS active. There is a drug trial in Houston that is working on one of those bad things (cell clones??) that my doc wants me to try - if it works he'll give me a little more donor blood and see what happens. I may or may not be eligible for it- he's going to reach out to them.  If it doesn't work he wants me to do another transplant- a more gentle one with less chemo and a longer recovery time. James is going to do some research and see what Dr Raza in NY has to say. We'll send her all the test results. So it's all very iffy. The doc thinks the transplant may work with a different/new donor. There are still all the dangers and I'm 8 years older. He says I am in excellent health tho and recommends it. So I'm freaked out and feel scared. This is all I know at this time. I'll share info when I know something new.
B

Saturday, March 11, 2017

Still waiting

Hi,
So the results were inconclusive. I have all donor T cells (great!) and about 10% old white blood cells that have come back. The docs are doing a bone marrow biopsy and the big DNA test on March 27th to see what's going on and how to proceed. They have no idea what's up and are hoping the tests shed some light. In the meantime I feel great and have no scary symptoms. So...here's waiting.
Sigh,
Beryl

Friday, January 27, 2017

O freekin vey

Hi,
All has been great but maybe not so much anymore. My last blood work came back with a few of my old girl cells. Since my donor was male all of my cells should be male. At last look there were a few girls which is what happened summer before last. The doc is redoing the test just in case and I should have the new results Feb 10ish. Then they will decide how to proceed. This is all uncharted territory. Of course I can't freekin believe it. I feel great and am full of energy. On that note, I'm going to go load my kiln. More when I know something. Hold me in light and health.
Argh,
Beryl