Monday, April 30, 2012

An island of stability.  That's what scientists call putative heavy elements (say, 114) that may last for minutes...or years.  That's sort of the feeling I'm having right now with my CLL. 

I did have blood work done on April 20 and they were excellent.  Other than a minor departure from the norm on my hemoglobin, my blood numbers are achingly boring.  Everything else, including WBC and platelets are well within normal range.  Platelets have been a problem for me for years...dropping as low at the 60s at several points.  And the WBC have been terribly low during my treatment with flavopiridol.

So what do I do now?  Do I gamble more on CAL-101?  Do I go down to Stanford and UC San Diego to see what else might be available that doesn't cause so much gastric mayhem? 

Don't know.  Will see.  Let the docs look me over. 

I will press hard for news and/or enrollment in the 'cure' that involves modified T cells.  I deserve to be free of this disease!  13 and one half years of CLL is long enough!!! 

What can we do to get closer to this putative cure?  About the only thing is to follow Dr. Keating's suggestion, and donate tons of money!!!  His group the CLL Global Research Foundation ( has given quite a bit of money away in its existence. And Dr. Kipps' Blood Cancer Research Fund ( is doing the same.

Meanwhile, I am revelling in my 'boring' blood numbers.  Others in the CAL-101 trial without the diarrhea problem must be doing well as well, though I don't see too many posts on CAL-101 of late.


kellyr78 said...

Congrats on your 'boring' blood numbers! That is always great news. I stopped in about a year ago and asked you a question. I am glad to hear you are doing well.

Anonymous said...

PubMed has this article about calming the inflamation of the colitis with Curcumin therapy. As you know, it is good for CLL and is being considered as a maintenance therapy.

Barry B. said...

Thanks for the comments. I do have a supply of curcumin. I'm not taken it of late because my gut (so far, saying my prayers) has not been rebelling.