Thursday, June 25, 2009

A year ago

A year ago, I checked into City of Hope for my chemo conditioning for my transplant.  Whooosh. Time is a jet plane.

I never thought going in that I would reject the graft, but I did. I worried about GVHD (graft versus host disease), and infections and relapse. I really worried about dying, but I never dreamed I would reject the graft.

Maybe it was a blessing. None of the horrors of GVHD for sure. No graft so no graft versus host.

More importantly, one year later, I have never had a lower tumor burden since the moment of my diagnosis than I do now, despite my failed transplant. Almost four years after I discovered my CLL, my disease, if it is anywhere, is deep in a few nodes in my guts. And even that is in doubt. I may be cured.

And all this has happened with a single week course of heavy duty chemo (FRC), a failed transplant, a splenectomy and some immunotherapy (R) and an immunosuppressive (cyclosporin) drug, not even used to treat CLL.  Who would have thought. Not the conventional path for sure. Maybe I am a trailblazer. The jury is still out.

Soon I will update you all on my diet (still raw vegan) and supplements, but I suspect their role in my deep deep remission is supportive. While it may be possible, I have my doubts that diet and zeolite can do the heavy lifting by themselves.

So what's the story? Frankly, I don't care. This is a good place - I hope I can stay in this sweet spot, for say, another 37 years. That would make me 95, and I would be ready then to move on to my next adventure.



Blogger J.R. said...

No one deserves the cure more than you who has so generously given of your time and knowledge to not only the CLL community, but to your patients for whom you have dedicated your life. A cure is the minimum thank you you merit. I'm thinking God agrees.

June 25, 2009 at 10:18 AM  
Anonymous L.Nishida said...

You have endured so much! You have been blessed and it's amazing how much you have gone through!!! Your openess and strength has given a lot of people encouragement!

June 25, 2009 at 4:40 PM  
Blogger Brad Anderson said...

You are an inspiration to so many people. What you have endured is incredible. Your positive outlook is amazing. YOu are truly a great individual. Thanks for the inspiration.

June 26, 2009 at 10:53 AM  
Anonymous wendy said...

"sweet spot", i like that. soak that in brian, it;s the good stuff

June 26, 2009 at 10:42 PM  
Anonymous Anonymous said...

Many people do get a complete remission or even a molecular remission from FCR. All go on to relapse.

Perhaps you will be an exception. Many of us get no lasting result from FCR or other chemo drugs, and are left very sick or dead.

There remains no cure for CLL.

June 27, 2009 at 11:29 AM  

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