Thursday, April 1, 2010

Lessons learnt but at what cost?

A letter I wrote to others with leukemia. This is an expansion on a recent post.

I don't think anyone has posted on the sad news of the recent passing of my friend, Ron after a valiant struggles with an aggressive 17p del CLL, complicated by severe GVHD and recurrent infections after a transplant and DLIs at MDACC, Houston. He survived only 3 and 1/2 years from the time of diagnosis.
Ron was 48, a father of 5, a clean living, marathon running, church going sweetheart. I knew him from our local support group and he was a kind and generous intelligent man.
I don't share this bring you down, but to see what can be learnt from those who did not follow his blog.
I don't recall all the details of his therapy but I'll will tell you what I have gleaned.
First, while I am sure Ron lived longer because of his faith, his exercise, and his healthy lifestyle, sadly for most that is hardly enough.
Ron knew that and went quickly to Dr Khouri at MDACC. After a hard fought deep remission with different aggressive therapy combos , which included Campath. He chose to be aggressive with an earlier transplant .
He did well after FRC conditioning for his HSCT 1000s of miles from his Californian home because he had done his research. This is the same protocol I had 2 months later.
Ron's chimerism stayed mixed, and the CLL crept back. He kept going back to Houston for DLIs at escalating doses. they did nothing but he looked great. Ran a half marathon post transplant. The last DLI finally cleaned up his CLL, but at what a cost. He may have died freed of cancer, but he was soon back in Houston with severe GVHD. He was hospitalized longer for GVHD than his transplant .
At some point he made a decision to stop flying back to Houston, but there was never a clean handoff to a transplant team in SoCal.
The immunosuppressive drugs including steroids took their toll. Recurrent infections, bacterial and fungal, treated with antibiotics lead to toxic mixes. His kidneys shut down. Dialysis was started. Nausea led to weight loss and weakness.
The last infection was too much. He was only 48 years old with 5 kids.
So here's what I have learnt.
It may not matter to CLL how cleanly you live or how hard you work out or what a nice guy you are or who prays for you. (This is coming from someone who still believes in the power of all these).
You can do all the research and pick the top CLL guns and still have a lousy outcome.
There are risks in being aggressive, both with chemo and transplants and especially with DLIs ( Remember I am the guy who griped about NOT getting DLIs for my mixed chimerism)
The therapy can kill you as well as the disease. We all know this intellectually, but in Ron's case this burdensome fact is impossible to ignore.
There are risks in being treated a plane flight away, especially if you don't arrange in advance a clear and clean handoff to the appropriate local experts. Community oncologists will be the first to admit they are not transplant experts. Few doctors are. Few are CLL experts, truth be told.
Finally, this is a bloody rotten disease.
Victor Frankl (author of the life changing book, Man's Search for Meaning) said tragedy is suffering without meaning. I am look for meaning in this loss, but in a heartbeat i would throw away any lessons and any meaning to have my friend alive.
So sad.
Stay strong.



Blogger Unknown said...


So many times I have wanted to express to you how much you are appreciated. Tonight reading your words about your (our) friend, Ron, did it. So meaningfully and beautifully expressed to our CLL community. Thank you.

Alicia Rodondi, San Jose, CA, dx 12/04, missed CBC report 03/01, stage 0, CD38 <1%, now 70, platelets may be where I will have a problem.

April 2, 2010 at 8:38 PM  
Anonymous Anonymous said...


You are blessed to have known each other.
If only it could have been for longer.

May his memory be for a blessing


April 3, 2010 at 3:47 AM  
Anonymous Anonymous said...

I keep expecting these losses to diminish as we learn a little more about CLL, but there's more we don't know about treating the disease than we know. Transplants should never be required.

I was 48 when I was diagnosed. I know the pain and the surprise at getting cancer at a (relatively) young age.

I am treated 500 miles away, and I have to fly to get there. The local docs know very little. Medicine is an art, and I find that local docs aren't up on the latest research. My FCR was probably cut short because the doc stopped it without real justification. I'm worse off now than if I had gone to an expert.

However, you do what you must do.

(One of the local hematologists I've seen has moved to another job. I met with his replacement, and he told me that he was looking forward to learning about CLL from me (!!!!). Obviously, you don't want to be treated by someone such as that.

I am sorry to learn of this terrible loss. I can only say that having a family might have helped ease his pain at the end. People remain to keep his memory alive.

April 5, 2010 at 10:00 AM  

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