Friday, June 23, 2017

More stuff

Hi,
The NY doc suggested a clinical trial at Columbia but I haven't been able to get much info on it other than it's very new, only 3-4 people in it, no real results, certainly no promises, and I would have to spend 1 day a week (really 2 with travel) in NYC indefinitely. I'm not seeing how this could happen, especially with it being indefinitely on-going with no clear benefit. In the meantime, one month ago I had 90% donor white cells and 10% old crappy returned cells. My most recent blood tests show it's almost 50/50 which is def going in the wrong direction. The hope was that this would be slow moving. We go to Houston this Sunday to meet with docs about clinical trials there. I'm not sure anything will be realistic for me but we are going to find out. I'll have a bone marrow biopsy there on Monday and results in a few weeks, That's the test that really matters. If I have normal blasts- things are less critical. My last biopsy was normal. If I have an increase in blasts, that's a different story. I'll know more in a few weeks. We met with Dr. Ballan at UVA's Bone Marrow Transplant center and we both liked her. Both she and my hematologist think I have a good chance of surviving another transplant 60-70% range.
On another planet, we are continuing with our upstairs renovation and had a lovely evening out with our beautiful grandson.
More soon,
B

Tuesday, June 13, 2017

Here's what I know

Hi,
Okay....
I went to NY and met with my old doc, Azra Raza. She's a big deal MDS doc and VERY opposed to transplants. The NY consult was good. She says I don't have abnormal blasts (which leads to Leukemia and was why I had the first transplant) just my old blood, that DOES have the potential for trouble- bad DNA. It's not ideal but she suggests I get blood work every month, a biopsy every 3 months and if something changes, look at clinical trials. She is VERY opposed to a 2nd transplant. The UVA docs say the same thing except I should def consider a transplant if things deteriorate and the clinical trials aren't useful.  James and I like the head of transplants and my UVA hematologist. We go to Texas, MD Anderson, to talk to them on June 25th and check out their clinical trials. Also Dr. Raza reached out to me a few days ago with a clinical trial at Columbia in NYC that might be helpful. So I'm kind of hopeful this will take some time to become critical or, as the NY Doc says, it could stay the way it is. No one has seen anything like this so they are not quick with an instant solution. 
In the meantime I am exercising, juicing, doing lots of EMDR and spending time with my family and friends. We just moved into our new house so there's lots of renovating and unpacking going on, as well.
I'm still processing everything and my head is all over the place. I'm trying to stay in the moment and not freak out with worse case scenerios. Most of the docs feel I have an excellent chance to recover from a second transplant but fortunately that is not a decision I need to make now. If I can wait this out 20 more years I'll be golden!
Meanwhile Thomas is turning THREE in a few months and continues to keep me focused on fun and love. He is really really really beautiful and smart and adorable and perfect. A lot like my sons. James  as always, is by my side, keeping me focused, talking with Doctors and making me juice. My friends and family are a constant source of power and love. Here's a picture of Thomas waiting for pancakes!

Thanks for holding me in light and health.
Beryl

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