Good news comes on the heels of another football Giants victory (3-0).
Yesterday's blood counts:
- Hemoglobin—12.2
- Platelets—97,000
I'm not personally thrilled with the 97,000 count because it remains below the magic 100,000 mark (magic for me, anyway, although I may be the only one). But, Dr. O was very pleased.
And, anyway, that count comes after Non-Shot Week Two, which means by the time we go back to shots next week, it'll likely be up some more.
The better news:
Dr. O has confabbed with Dr. MDS about the bone marrow biopsy report. Dr. MDS has declared that we should
And, anyway, that count comes after Non-Shot Week Two, which means by the time we go back to shots next week, it'll likely be up some more.
The better news:
Dr. O has confabbed with Dr. MDS about the bone marrow biopsy report. Dr. MDS has declared that we should
- continue with the Vidaza treatments
- forget about a bone marrow transplant for the foreseeable future
- and plan for a reduction in Vidaza treatment frequency in either 10 months time or after a total of 10 months of treatment.
But, which is it? Ten months time or 10 months total? I'm not sure.
Okay—go ahead and accuse me, as my mother often did, of not listening. Or of not absorbing what I've been told. But, c'mon—I'd just spent an hour-plus in the waiting room, the joint was jumping with patients in all examining and treatment rooms, and, after all, Dr. O speaks with a pretty strong Indian accent.
Those are my excuses.
No matter. Either in 10 months or after 10 months total, we're talking about shots only every four or five weeks instead of every three.
I'll take that.
Okay—go ahead and accuse me, as my mother often did, of not listening. Or of not absorbing what I've been told. But, c'mon—I'd just spent an hour-plus in the waiting room, the joint was jumping with patients in all examining and treatment rooms, and, after all, Dr. O speaks with a pretty strong Indian accent.
Those are my excuses.
No matter. Either in 10 months or after 10 months total, we're talking about shots only every four or five weeks instead of every three.
I'll take that.
Posts
hi mitch
ReplyDeletejust found you. why aren't there more MDSers out there? i feel i just found a member of my tribe. newly diagnosed of 3 mths, doing the Vidaza with BMT down the line.
counts are very low except for platelets. transfusions on occasion, as well. sounds like you're doing pretty well.
glad you are out there.
mfb3369@gmail.com
Marina--
ReplyDeleteGlad you found me, too. It's a small world, this MDS, and every time you discover someone who's suffering it, it's like coming across a long-lost relative, or a summer camp buddy you haven't even thought about for 30 years or more. I'm sorry to hear about your low counts - the relatively high counts are one of the things that keep me going these days - but, the transplant will probably do the trick when the time comes. Hang in there.
Bill: Boy have I gone through some hoops just to send you this comment. Been where you are TWICE! First transplant Seattle Hutchinson Friday 13th 1996. Matched Unrelated donor (from Germany) and my second at City of H... in Duarte, CA. Fought for it. Now have to "fight" chronic Graft vs. Host. (Second donor also in Germany.)
ReplyDeleteMy "specialists" in Pasadena, CA and 2nd opinion at UCLA said at 54 "you are too old for transplant. Give you morphine instead...
I self referred to Hutchinson and months later after they located a donor transplanted. Tough.
Lasted 9 plus years. Now been over 2 years since my second one. I suggenst that you now worry about platelets -- they are fully replaced every 5 days or so. Today's count can be more or less the next day. Suggest you go skiing. Live it up! If you get down to 20K they probably will give you a platelet transfusion. They don't last long.
Now: consider why you are not talking transplant. 91 or 100 people who need them, never get them. Too old, doubtful, aren't you in your 50's. I'm 68 now. Transplants occur in 70's depending on person's condition. Money?
You said your wife has good insurance. Mine too. Need to contact them and tell them what you need! Let them say "No" if they want to, in writing, and the YOU APPEAL. And you can also appeal through most States. Mitch, you need to push this situation along. Vidaza is just paliative. Fancy word, means NOT CURRATIVE. More or less. Get your wife, friends, relatives involved in trying to get you a transplant. I'm at William_Britton@msn.com if you want to contact me. My best wishes!
Bill--
ReplyDeleteThe transplant vs. no-transplant debate will linger for a while. Frankly, I've never liked the odds for success, at least as they were given to us, but I think the one factor I do like is my doctors. I like them; I trust them. We all understand that Vidaza is paliative, but given what's involved in a transplant and how well the drug is working, nobody here - including the MDS specialist who initially was pretty enthused about tranplantation, feels it necessary.
I know the platelets last only a few days, but the fluctuating counts still drive me crazy. That's a psychological issue, not a physical one, and I expect I'll get a handle on it. I have every intention of skiing - whether I can ski the way I have always done is another matter. It's hard to ski bumps and steeps all day if you can't stay in shape.
The insurance does not appear to be an issue. It will be in 4 years when Medicare becomes involved. We have that in mind. For now, however, we'll keep tracking the Vidaza way, and see what comes down the pike.
mk