Thursday, July 20, 2017

okay- here we go....

Hi,
I spoke with the doc at about 6:30- he says all of my blood counts are down (they have been declining all along) and that my platelets are now below normal for the first time. He wants me to start Vidaza (chemo) sooner than later. He says it takes a while for it to kick in and he doesn't want me need a transfusion or be more prone to infection etc. So I start on Monday July 31st. Five days on and three weeks off. I'm not thrilled but I don't want to go into serious decline. I know this drug and it's a good one so I'm proceeding. Please think of me as the kick ass healthy monkey that I am.
In health,
Beryl

Wednesday, July 12, 2017

PS

Hi,
I'll see my UVA Doc next Thursday and we'll discuss the start date and other stuff. So in the meantime...
B

And now for something completely different!

Hi,
I just spoke with Dr Daver  (MD ANDERSON) and he said my blasts were normalish (still signs of my original disease but it's moving slowly). He said I wasn't eligible for any of the trials because the blasts weren't advanced enough (under 5% is normal) and I wasn't getting transfusions, or other drugs to build hemoglobin. They just changed the trial I was eligible for to exclude patients who had had a transplant. They changed that 2 weeks ago. They found toxicity issues with 3 of the patients. So it's kind of good news I think. He suggests I go back on  vidaza   on a 5 day a month schedule.  He suggested I get another biopsy in 3 months and we see what we see. He thinks it's possible for the vidaza to normalize the cells and put me back in remission. So I'm meeting with my UVA doc next week and I'll probably start on a 5 day chemo cycle soon. This is maybe good news- that's how I'm taking it, anyway. I'm going to keep doing all the good healthy stuff I've been doing and try to slow this train down. I'm glad I don't have to go to Houston. My house is becoming so livable! I'll include some photos.
Oy,
Beryl


Monday, July 10, 2017

Argh and Argh! a Delay!

Hi,
The doc's scheduler just called. He has an emergency today and will call me on weds. Late afternoon.
Oy freekin vey,
B

Wednesday, June 28, 2017

The Big Trip to Houston

Hi,
We got home last night and here are the highlights:
 I like the doc. He's young and very brainy. He ordered a biopsy to see whats up with the blasts and also their chromosomal make up. If my blasts are normal (blasts are abnormal cells that should self-destruct but don't- that causes Leukemia) we just chill and keep a regular watch. If they are increasing or have the MDS clone,  he wants me in a promising immunotherapy trial. It's a mix of 2 drugs that are meant for situations similar to mine . No chemo. The plan is 1 month in Houston to make sure I respond well and am close to the hospital in case I have a bad reaction, and then 1 day every two weeks for the treatment. Then once a month. Not sure for how long it will last. I think I can do that. One month in Houston beats another transplant. He thinks the treatment will at least hold things at bay and at most provide a cure. He's optimistic. I'll continue to work and figure out a way to be away from school for a month.  So we'll know on July 10th what's up. He'll call with the result of the test. In the meantime I'm glazing tiles for my new bathroom and plan to play with Thomas soon. I was very freaked out lSunday night and couldn't sleep.  James did a lot of EMDR with me and I was able to settle down. After the biopsy we ate a great Thai meal and had a huge freekin piece of chocolate cake with decaf lattes. We couldn't finish the cake (4 layers) but we really really tried. I worked out today and feel very optimistic. I'll post after I hear the results of my biopsy. In the meantime- a picture of cake!!! It doesn't really give you a sense of the scale. That's a dinner size plate!!!!
B

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