Thursday, July 1, 2010

Two Year Anniversary

Today I celebrated, not only the birthday of the country of my birth, Canada, but the second anniversary of my hematopoietic stem cell transplant.

I am grateful to be here and so well. Others were not so blessed.

I have managed to avoid much of the grave toxicity of treatments which have knocked back my CLL and my fearsome complication of low platelets with a minimum of side effects using my most "unorthodox" approach as described by Dr. Kipps.

Yet I get tired of all this dancing around to avoid heavy duty chemo and still keep the CLL/ITP at bay. My maneuvering has bought me almost 5 years But it hasn't been enough time to find the cure. Not even close. How about an orthodox therapy that will save my life and that of so many friends? The only option out there is still a transplant, and I am more and more realizing how lucky I am to have had such a benign if failed course after mine.

We are all tired of the waiting for the magic bullet, our own Gleevec, a relatively non-toxic very focused small molecule that revolutionized care for our cousin disease, CML. CML used to top the list of transplants. Not anymore since Gleevec.

We are all tired of dancing and are looking for a more healing partner than old school chemo.

Will it be CAL 101 or Revlimid or ABT? I doubt it, but they are strong moves in the right direction. I have hope.

In the meantime, what choice do we have? We dance on. After all it is my rebirthday and I am deeply thankful to be alive and writing this note.

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Anonymous Anonymous said...

CAl-101, revlimid, ABT-263 are not cures, nor do they lead to many complete remissions or even molecular remissions.

The best we can hope for is a series of medications that can hold the disease at bay for a number of years.

Cancer will never be cured with drugs. It is too complex of a disease. The only thing that will 'cure' cancer is the immune system. That is how a transplant works. The stranger's immune system is robust and your Cll cells prompt an even stronger immune response than your ordinary cells (see graft v host disease for the latter).

And transplants don't really work well. And they hardly work at all for MDS, CMML, Richter's and other transformations of CLL. The mortality rate is high and not coming down. Only 7% of people live 20 years after a BMT. And Obama will eliminate even this as an option when he can.

That's just reality.

(BTW, even your cite of CML is less-than-encouraging, since a substantial number of CML patients fail Gleevic and other drugs, and die from their disease. And they are never cured of it. However, for the most part, it is a better blood cancer to have.)

July 2, 2010 at 1:08 PM  
Blogger J.R. said...

Trip the light fantastic if that's the only way to go. You seem to have mastered the steps so far. Happy Birthday my friend.

July 2, 2010 at 10:20 PM  
Anonymous Anonymous said...

Hi Brian

Happy 2nd Birthday.
A thought provoking post on the issues and problems. Life post-transplant isn't easy either way. I think we swap one set of problems for another. Having just been to my CML friend's memorial service let us just be glad to be here to complain. She would sway with us!

I also liked the article on Ezer Mitzion, My daughters are at Leeds University and they have a very friendly Jewish Community up there. The girls are on the bone marrow register.

love from Sunny London

July 4, 2010 at 12:41 PM  
Anonymous Anonymous said...

Brain, Happy anniversary from Montreal.

I do hope with you for CAL, Revlimid and cure!


July 16, 2010 at 1:09 PM  

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