Sharing our Stories

[Guest guest]

Friends.

Recognizing the value of the longevity stories, I thought it

might be helpful if some of us shared an executive summary

of our CLL journeys from which others can learn. The group

is there to answer questions from like travelers in times of

need, but it is also valuable to know some of the twists and

turns others have negotiated that has lead to good and bad

results.

I'll start the ball rolling.

Diagnosed almost 6 yrs ago at age 54 with swollen nodes and

a very slightly elevated WBC. Bad prognostics: 11q del,

unmutated, ZAP70 +, CD38+. Saw Kipps at UCSD and Rai at

LIJ. My WBC counts rose slowly but my CLL quickly grew in

my nodes and even a big beard couldn't hide the bulges in

my neck. 1 year after diagnosis, I noted petechiae on my

legs and found that I had single digit platelets from ITP.

That was the first of 5 times in the hospital in < 1 yr

with very low platelets.. Very scary times. Failed

steroids, R, IVIG, and an emergency splenectomy. Finally

the combo of Cyclosporin and Rituximab worked and also

unexpectedly shrunk my palpable nodes, cleaned out my

marrow and normalized my counts. Had a perfect match from

Israel, so I had an early reduced intensity (FCR) allo-

transplant July 1 2008 at City of Hope, but lost the graft,

likely because I was too healthy from the lack of long term

chemo pre-transplant. My CLL was back in 6 months (in the

nodes first) and ITP was back in a year, currently

controlled with my old friends R and IVIG and cyclosporin.

The later is hard on my BP and kidneys, but it beats the

alternatives. No infections, no anemia, no reactions, no

other problems.

That's my story and I am sticking to it

During all this I have walked my daughter down the marriage

aisle, and am now expecting our first grandchild. Last week

I said a final goodbye to my father. (It was not clear when

I was diagnosed who would pass first) . We have traveled to

Australia, New Zealand, China, Japan, and all over Europe

and North America in several trips. I have been forced to

redefine my career from a practicing MD to a teaching MD, a

gratifying change. I enjoy every minute of life and put

little off to the future.

Life is sweet. As someone said, if it weren't for the

downside, and the downside is enormous, everyone would want

cancer.

Please share your stories if you think this is a good idea.

We are all in this together.