New Year Resolution: Transplant

[jga_socal]

Hi.
I havent posted in a while for various reasons, but I’m still here and kicking. Since my RBC production pretty much ceased in September I’ve been getting bi-weekly RBC transfusions.
So… I’ve decided to shoot the moon, get a stem cell transplant. There were some delays with the donor in November but now I’m ready to report Jan 1st for conditioning (poisoning), with the actual transplant (the antidote) on Jan 9. The donor is a 10/10 HLA match so the prospects of gvhd have been minimized as much as possible. The fun actually begins in 2 days with the installation of a central line catheter in my chest. The next day I’ll get a ‘test’ dose of the chemo (Busulfex) so they can study it’s immediate effects. From this data they will derive the correct dose for my 18 sessions with Busulfex starting Jan 2.
For anyone interested, I have a blog at interanimate.com. In the spirit of my blog-buddy Duane at JournalOfAPrizeFighter I will try to blog daily and keep it upbeat. I realize that a sct blog can turn rather depressing fast. However, I think there is value for anyone who may be considering a sct in the future. I will write for my own therapy (to have something to do) and for those who may be curious about the experience. My blog has unmoderated comments, so feel free to comment or question if you wish. Also you can subscribe with an email address so the posts are delivered to you (courtesy of feedburner.com). If I am unable to write but there is important news, my wife Cathie, will post. Hopefully, this will be a temporary situation, but I can’t promise. If you occasionally pause for a moment to silently pray for me, wish me well, or project positive energy in my direction; I will appreciate it and benefit from the connection. I think we (the living) are all connected in unseen ways. But, just in case, I’ll also keep my fingers crossed throughout 2008. 🙂
Have a Merry Christmas and a happy New Year! Here’s to better health for everyone in 2008!
Jim

[eve]

dear jim

hope your transplant is 100% successful

here is to good health in the coming years

good luck
eve

[CathyW]

A transplant is also on my “To do” list for January. I was diagnosed in December 2005 with RCMD. I did not have the 5Q deletion, but my doctor started me on Revlimid in January 06, and it worked beautifully for about 18 months. I was in complete remission. It felt like i had an imaginary illness. I worked full time and rarely got sick.

This fall my counts steadily began to decline. Platelets have always been my biggest problem, followed by a WBC that often leaves me severely neutropenic, my RBC were the last to decline.

Now I am platelet transfusion dependent My latest CBC listed platelets at 5. I have been getting platelet transfusions twice a week for a couple of months. I also receive RBC transfusions about every two weeks. My ANC is 0.02. My latest BMB moved me to REEB 1 and I am off to undergo a transplant.

My brother is a match. We are just waiting for insurance issues to be resolved. I want to have the transplant done at UCLA, but they recently lost their contract with Blue Cross. UCLA accepts a lot more high risk patients, so their survivability statistics are lower. They are still rated the #2 hospital in the nation. At the moment, Blue Cross requires that all of their California patients to go to City of Hope. I also have a supplemental policy with Aetna and since I had already started the donor search before UCLA lost it’s contract, I am hoping to be able to stay at UCLA. It is really convenient for my husband and son. I trust my doctor and don’t want to start all over some place new. The City of Hope is excellent, but much further from my support system of family and friends.

I know I have a lot to be grateful for — a matched sibling donor, insurance, and a supportive group of family and friends. But I am still scared. I look forward to the opportunity to fight for a cure. Too bad the red tape always seems to get in the way.

[jga_socal]

CathyW, Im led to believe all the nmdp certified bmt centers share their data. So, in fact, you probably stand just a good a chance at ucla as coh. If one bmt center stumbles across a great protocol they will publish it and other centers will follow suit. Many of the bmt doctors in the state started their bmt training at coh anyway.
good luck. i am rcmd too but never did chemo. the chemo may work for a while but those pesky bad stem cells will continue to slip back in the assembly line and do there non-thing. Its best to go out with the old and in with the new.
please let us know how you are doing.
jim

[riley]

Jim and Cathy — Good luck to both of you! I pray that your transplants will be perfectly successful and you will have smooth sailing ahead.

Jim — I just signed up to receive your email updates. Thanks to you and your wife for keeping the blog so we can all stay posted on how you’re doing.

Nicole

[choijk]

Jim,
I was just thinking about you the other day! I just sent some positive thoughts and prayers your way!!! I will be sending some more your way, each and everyday during your hospital stay.
God bless,
June

[celebrations]

dear Jim,
I’ve never posted so much….but have read many of your posts.
God bless you for your SCT in 2008 and you are in my prayers all the way from Germany,
cele

[jules]

I would like to send you my love and best wishes and have signed up to see your email up dates which i will read with great interest .much love to you and your family jules x

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