An elective transplant

[Guest guest]

Fellow CLLers,

Some of you know me from the ACOR list. While it a bit overwhelming to be be

active in

more that one CLL support site, i am hoping I can be of some help to those who

are active

or lurking here as well by sharing my experience. I am happy to answer any

questions, but

with a transplant coming up soon I am swamped, My path is a bit unusual and

quite

aggressive

I am planning a first remission transplant with no history of any cytotoxic

chemo. Only

Rituxan and cyclosporin A. My CLL is knocked way back. Last year was tough. In

hospital 5

times for low platelets from ITP. It is not untrue to say I could have died.

But now, my

blood counts including my formerly disappearing platelets and pesky lymphocytes

are

back to normal. My serum chemistries and tumor markers are all within normal

limits. My

nodes which used to be 5-6 cms are all shrunken. My bone marrow which had 90%

cancer, now has 3%. And I feel great.

But my cancer is not gone. It is in remission, and its most virulent hordes may

rise again. I

don't know when, maybe never, maybe soon. So like the Amalekites, I will blot

out their

memory and kill their children's children. And the only way to be certain it

stays gone is

eternal vigilance. That means a new immune system, because mine is not up to the

task.

So I am getting my new blood system from my unknown out of the country (maybe

Canada) blessed 22 year old male biological twin. A perfect 12 of 12 match, with

even my

rare A- blood type. It is very sobering to be doing this when I feel so well. I

am trading off

an unknown length remission for a chance at cure The numbers are sobering.

Without a

HSCT (haemopoetic stem cell transplant), my chances of reaching 65 are very

slim. With it,

I have at least a 10% chance of dying in the first 100 days, a 30% chance of

severe graft

versus host disease, both short and very very long term. Double the death rate

even 10

years out. Missing a year of work wouldn't be a surprise. But it gives me a

50-70 %

chance at a cure.

Most people wait for their HSCT as a " Hail " desperation last move. I am

doing it from

a very healthy and quite elective position. I haven't even had any real chemo

yet. I have

other cards I could play, but I have the perfect donor and a deep remission and

my good

health so I am gambling it all. The stars are lined up.

Would you gamble it all?

I am so scared and so convinced that is the right thing to do. I have no doubt I

should

move from strength to strength. If the transplant is safe for me and the donor,

I soon will

be writing my most original essay on how I spent my summer. But first I visit

family and

friends. I have been crazy busy squeezing much fun and travel into the months

before my

planned stem cell transplant in June. I just returned from Philly this weekend,

Baltimore 2

weeks later, and then I am in NYC and Toronto 2 weeks after that. Just back from

Prague

and Vienna, before that Seattle and Vancouver. I am so lucky to get to do all

this traveling

to see my family or just see the world. After the transplant, I will be content

with the view

out the window for a while. My point is that CLL forces us to face our

mortality, and

because our time is limited (Me? I expect I've only got another 40 years or

so before I

move on), it is too precious to waste. The hardest part for me after the

transplant will be

not practicing medicine for months. It so defines who I am. I am making this

last push of

teaching and seeing tons of patients as I also must do my own prep for the

transplant.

For now I am planning a real time graphic novel about the transplant with my

artist son.

How cool is that! Please forgive my bravada. It is my way of coping with my

real fears. I

have no doubts of my ultimate success and no illusions about my trials.

Be well

, 56 yr family doc & father of 4, dx 9/05 del 11q w ATM, unmutated, CD38+,

W & W,

stable except for growing nodes and spleen until ITP 9/06 eventually failed

steroids, IVIG ,

Rituxan and splenectomy, now on cyclosporin with ITP controlled and CLL in old

school

CR, planning a RIC (reduced intensity conditioning) MUD (matched unrelated

donor) HSCT

soon at City of Hope