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.

Monday, April 9, 2012

Night sweats

I'm beginning to get a bit sweaty at night, not a good sign. However, they are not drenching night sweats (which I have had years ago; they are terribly uncomfortable.

I view this as not a good sign, but since I'm not treating my CLL now, I see no solution to doing what I am doing. Still off CAL-101 because of the diarrhea. I am much better now, but the frequent and urgent diarrhea is in many ways worse than the disease.

Don't think this is a problem with many folks, but it is with me.

Saturday, April 7, 2012

An update

I have not posted in many months; for that I apologize. It has been a terribly difficult period, and I just have not felt like posting, not to mention that I have only unfortunate news to report.

I have been in the hospital more than I have been out, though my last admission was in early February. I came close to packing it in in early January, when I was taken by ambulance (I remember nothing of this, but I have a hefty bill from Sac Fire Department) to the hospital with a raging fever.

As far as CAL-101 goes, I'm off the drug at present. I have had a flare up again of the diarrhea, to the point were I was in the bathroom 50 times in one day. One cannot live like that; literally, as my potassium dropped to dangerous levels.

The good news is that I seem to have some residual benefit from CAL-101. I've been off the drug for three weeks or so, and I am still doing OK. My abdominal nodes are back up, and that is unfortunate, but they appear to not be giving me lots of problems. I am also sweating some at night, but that doesn't wake me up, so I don't know if that qualifies as drenching night sweats (I don't think so). It's not a good sign, but I can live with it.

I will see Dr. Coutre at the end of the month to see where we go from here. Off the drug, my diarrhea has abated, but not totally. He believes that I've developed colitis, perhaps separate from the drug. All I know is that I'm 90% OK on the diarrhea front, but it's got to be 100% or I'm still pretty much home bound.

I note with sadness the passing of Dr. Hamblin. He and I sparred on a number of occasions and on a number of topics, but his knowledge and his expertise was without question. He is terribly missed already. He could explain complex issues in a way even I could understand it.