Wednesday, June 23, 2010

New to CLL?

Here is a nice intro to CLL for newbies with a human interest angle from Curetoday.com. It is deeper than most introductions, but still accessible for those who are blessed to not need to be steeped in the nuance of the complex disease.

All of the doctors interviewed for the piece are tops and here's hoping that one of them leads the charge for a cure. Real soon!

Obviously based on my history, I am not in complete agreement on the last ditch role they see for transplant, though I am less sanguine about its place due to its evil dark side, graft versus host. I have seen too many good souls taken down that path without returning.

I am the 11q del that is mentioned for its propensity to have short remissions. No fun.

BTW, I am at the infusion center and I just received my CBC results. Platelets are a wonderful 274,000 today so it looks like the cyclosporin and rituximab is continuing to work its magic though not continuing to the lofty supernormal counts I had prior to my transplant. This hints at a weaker response than last time when the numbers were just up and up, but it way too soon to see a trend. It also suggests because of the 60,000 drop from last week that the IVIG I received two weeks ago may still be helping. If that is the case, I would expect a small jump when I check the count again next week before my next rituximab infusion.

If the numbers continues to fall, then I will need a Plan C and I will need it fast.

274,000 also means I can go hang gliding tomorrow. My only worries are the usual concerns whenever you jump off a mountain: not getting airborne with the resultant crash, midair collisions with other fliers, and hitting something you shouldn't when landing, but not the additional ones of bleeding and bruising from any minor jolt or twist that comes with low platelets. This is my chance.

As the great scholar, Hillel said: If not now, when?

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2 Comments:

Anonymous Anonymous said...

Brian, It was good to see you last week at University Synagogue. Rabbi Arik Ascherman of Rabbis for Human Rights, continued his tour of Southern California in LA and Pasadena. Another courageous individual.
Despite it all, you look and sound up beat.
I appreciate your up dates on the medical issues. BTW, it is Hillel not Maimonides on "If not now, when." Enjoy your flying!! Haim

June 24, 2010 at 9:25 AM  
Anonymous Anonymous said...

Indeed, they are blessed who are ignorant of the ins and outs of any form of cancer.

Although I must say that I've learned a lot. Occasionally when I visit the GP or non-oncological doc, I'm sometimes asked, 'Are you a doctor?' I find that funny.

But, I'd rather be ignorant of all of this, and never heard of, let alone know, Drs. Kipps, Keating and the other CLL gurus. I'd rather worry about grandkids and planning another trip overseas.

But a defective body has left me crippled, in the larger sense of the word.

June 26, 2010 at 7:52 AM  

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