Tuesday, August 22, 2017

Hi- sorry for the lapse

Hi,
I'm sorry for the lapse. Life...am I right?
So the first cycle went well. So far no side affects. I am doing 5 days instead of 7, which is much easier. My hemoglobin was low and I had to have a transfusion. I haven't had one since my transplant. The low hemoglobin makes going up stairs and hills a challenge. Other than that I'm living my regular life. I'm at UVA right now waiting to see if I need more blood. My doc is being very attentive to this which I appreciate.
I'm trying to stop caffeine after 2:00 so I can tell when I am tired and actually rest. There's an innovative idea, right? In the meantime our home renovation is in full swing and we have been living with all of that excitement. There does seem to be an end in sight. (please baby Jesus!).
Thank you for your positive thoughts and energy. Sometimes I feel daunted but I've been able to do EMDR and come back.
School has started and I'm back in the saddle. I'm VERY lucky to be where I am.
Take care,
Beryl
PS My Grandson just turned 3!!!!

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