Last week's white count, even after three neupogyn shots, only rose to 3.7, so resumption of the revlimid was delayed until my lab work today. Blood count today was good. White count holding at 3.8, platelets at 94, hemoglobin 10, and hematocrit 30. Good enough to go through another cycle of revlimid (3 weeks). After that, I'll have 3 weeks to wean off the prednisone. Sometime during that 3 weeks we'll be moving to Houston to get tested and prepared for the transplant from brother Mike.
I'll be in the hospital at M.D. Anderson for a month for the transplant and recovery. They'll give me immunosuppressants so I don't get in too big of a fight with my brother's stem cells, then they start the monitoring to see how I'm handling the change from my immune system to his. (I'll even end up with his blood type, rather than mine). Then I'll be "confined" to Houston for 3 months in case I pick up any bugs. We'll be staying with Susan's brother during that time. If I get sick, even so much as a mild cold, I'll have to go to the hospital immediately, as I understand it. I've committed to go to my 40th high school reunion back in Dickinson, over the 4th of July, so I'm planning on departing Houston in late June.
I had to have one final discussion with Rifkin about other options. In his view there aren't any other options. He and Dr. Giralt see this as the opportune time to do the transplant. More cycles of revlimid are not an option due to the risk of increased toxicity and lack of eligibility for the transplant. But, we have accomplished more than what was expected by either Rifkin or Giralt with the revlimid and prednisone. As Rifkin described it, "you'll be buffed and polished and ready for transplant after this next cycle." So here we go. Just call me Mr. Florsheim.
My brother Tom visited over this past weekend. We had a great time, including working through his list of home repair jobs. The topper was the scrabble game on Saturday night, which I pulled out on the last play of the game. A come from behind victory, not unlike the one the Indianapolis Colts pulled out on Sunday.
Thank you everyone for hanging in there with us.
Love,
Dan
Monday, January 25, 2010
Monday, January 18, 2010
Struggling White Count Leads to Hiding in Basement
First, let me correct a typo in my previous post. My white count as of that date was 1.8, not .8. It remains there. "So what", is the likely response from most of you. But the MM patients who read this will be tuned in to those numbers. My neutrophils were .8 and are now .6. (normal is 1.5 to 7) Neutrophils are the best of the white cells. So, rather than start cycle 3 of revlimid I got a neupogyn shot today to stimulate white cell production. I'm lined up for shots for the next 2 days, then we'll see if I'm ready to start the revlimid. In the meantime I've holed up in the basement to watch sports, westerns and comedies on TV in order to avoid exposure to any nasty bugs.
Given my response to the revlimid and the dipping white count, this could be my last cycle. Then, we'll be on to M.D. Anderson. It is possible I'll go through 2 more cycles, but I'm thinking that's unlikely. IGGs are now at 2000 (down from 4600 at the start) (normal is 700 to 1600) and M protein is now 1.4 (down from 3.2 before we started the steroids this summer). Before the transplant I'll have to go through another week of testing to restage my disease. I also have to be off the revlimid and steroids for 3 weeks or so, so the actual transplant may not commence until March. We're also starting the scheduling for Mike to go through testing and then harvesting of his cells.
Mentally I know Susan and I aren't ready for another 4 months of "treatment" away from home. But then, we weren't ready for any of this, so I guess we'll just pack it up and move on down to Houston for awhile. Her brother Gary is being so nice in his preparations for our "visit", including purchasing a recliner for my comfort. I call him regularly to remind him that he still has time to get out of town before we arrive. What would we do without our families?
Speaking of which, Catherine is threatening to sign up for the Yahoo triathalon team to raise funds for the Leukemia Society. Talk about inspiration! I'll plan on being in NYC in July just to see her finish. Don't let this post put any pressure on you, Catherine. But we're all waiting for your final answer. And since I'm not on facebook you'll have to post that response here.
Both Rifkin and Giralt continue to be very pleased with my response to the revlimid, as are Susan and I. As an aside, I just picked up my refill of 21 days of revlimid. A mere $8,000, which my insurance company and I split. Nothing like meeting my high deductible with one prescription. That's all for now.
Dan
Given my response to the revlimid and the dipping white count, this could be my last cycle. Then, we'll be on to M.D. Anderson. It is possible I'll go through 2 more cycles, but I'm thinking that's unlikely. IGGs are now at 2000 (down from 4600 at the start) (normal is 700 to 1600) and M protein is now 1.4 (down from 3.2 before we started the steroids this summer). Before the transplant I'll have to go through another week of testing to restage my disease. I also have to be off the revlimid and steroids for 3 weeks or so, so the actual transplant may not commence until March. We're also starting the scheduling for Mike to go through testing and then harvesting of his cells.
Mentally I know Susan and I aren't ready for another 4 months of "treatment" away from home. But then, we weren't ready for any of this, so I guess we'll just pack it up and move on down to Houston for awhile. Her brother Gary is being so nice in his preparations for our "visit", including purchasing a recliner for my comfort. I call him regularly to remind him that he still has time to get out of town before we arrive. What would we do without our families?
Speaking of which, Catherine is threatening to sign up for the Yahoo triathalon team to raise funds for the Leukemia Society. Talk about inspiration! I'll plan on being in NYC in July just to see her finish. Don't let this post put any pressure on you, Catherine. But we're all waiting for your final answer. And since I'm not on facebook you'll have to post that response here.
Both Rifkin and Giralt continue to be very pleased with my response to the revlimid, as are Susan and I. As an aside, I just picked up my refill of 21 days of revlimid. A mere $8,000, which my insurance company and I split. Nothing like meeting my high deductible with one prescription. That's all for now.
Dan
Friday, January 15, 2010
Donor Selection
M.D. Anderson has preliminarily selected brother Mike as the donor. The criteria seemed a bit ambiguous to me so I don't think there was one overwhelming factor that dictated the decision. Tom thinks its favoritism towards a fellow Texan. He still has to pass the tests to make sure he is fit to be a donor. I've told Tom to stay in the wings in case we need a last minute replacement. Timing is still uncertain but we could be gearing up within a couple of months.
Revlimid continues to do its job. IGGs have dipped to 2000. The revlimid also hammers my white count (.8 on Monday) so I am still hiding from crowds, avoiding shaking hands, etc. Could this treatment turn me into an anti-social introvert? Unlikely.
I am so impressed by Rifkin's care of me since returning from Arkansas. He has literally brought me back from the edge. Although my bone marrow isn't working like it should, at least it's working to some degree. And he and his friends at M.D. Anderson and Mayo have found a regime to bring the cancer levels down and open the door for the transplant. We had our doubts this summer but, once again, we have a path forward. What a life!
Much love to all,
Dan
Revlimid continues to do its job. IGGs have dipped to 2000. The revlimid also hammers my white count (.8 on Monday) so I am still hiding from crowds, avoiding shaking hands, etc. Could this treatment turn me into an anti-social introvert? Unlikely.
I am so impressed by Rifkin's care of me since returning from Arkansas. He has literally brought me back from the edge. Although my bone marrow isn't working like it should, at least it's working to some degree. And he and his friends at M.D. Anderson and Mayo have found a regime to bring the cancer levels down and open the door for the transplant. We had our doubts this summer but, once again, we have a path forward. What a life!
Much love to all,
Dan
Saturday, January 02, 2010
The Blue Moon
Perhaps you had the good fortune to see the beautiful full moon two nights ago. This was the second full moon in a month and thereby earned the title of "blue moon". This occurs about every 2 to 3 years. The next time the blue moon will fall on New Year's Eve, however, is December 31, 2028. The moon reminded me of one of my favorite songs by Van Morrison. Part of the lyrics are set forth below:
Once every once in a while
Something comes along that feels just right
Once every once in a while
Just like switching on an electric light
And sometimes you try till you're blue in the face
But when you get that feeling
Nothing's going to take its place
Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace
When the wind is blowing
All around the fence
I get that happy feeling
Things start making sense
All just feels so lucky
That you just can't go wrong
Once in a blue moon
Someone like you comes along
Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace.
It's a great tune. And I wish for all of my friends that you find happiness more frequently than every blue moon. It's there for the taking, this I know. Much love to all of you for the new year.
Dan
Once every once in a while
Something comes along that feels just right
Once every once in a while
Just like switching on an electric light
And sometimes you try till you're blue in the face
But when you get that feeling
Nothing's going to take its place
Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace
When the wind is blowing
All around the fence
I get that happy feeling
Things start making sense
All just feels so lucky
That you just can't go wrong
Once in a blue moon
Someone like you comes along
Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace.
It's a great tune. And I wish for all of my friends that you find happiness more frequently than every blue moon. It's there for the taking, this I know. Much love to all of you for the new year.
Dan
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