Large Diffuse B Cell Lymphoma

Transformation to large diffuse b-cell lymphoma. It's particularly troubling that there is no money for research into this affliction that affects so many CLL patients, especially since the risk is increased significantly with the use of FCR and other drug combinations that combine alkylating agents with purine analogs. This provides a potent mutagenic punch to the unstable CLL genome.

Contrary to Dr. Hamblin's glowing endorsement of FCR, and MD Anderson's love affair with the dangerous drug combination, stay away from this unless there is no other option. (Dr. Hamblin says anyone who has a serious side effect such as Richter's just 'gets the sticky end of the lollipop' a description I find insultive, dismissive, and arrogant.

For me, it's too late. but for those out there who are facing treatment decisions, choose something else. Especially with the prospect of an actual cure dangling tantalizingly in your faces.

CLL Rampaging Out of Control!

Since my last post, all hell has broken loose, and my CLL is out of control.

My last blood test on June 19 had my WBC declining by 20k or so. I expected at least only a modest rise, if any, based on how I felt.

Wrong!

My numbers have gone sky-high, from about 30k to over 176k, in one month. I guess this qualifies as doubling in less than six months.

Thank goodness for blood tests, because I wouldn't have known I was going downhill so fast without them.

We've decided to treat as soon as possible, with something. We've decided that I should get a blood retest this week. I've been putting it off because, well, ignorance is bliss??? Isn't it???

With all the new knowledge and the prospects of better treatments in the next few years, why is this going so quickly downhill for me? That's just the way it is.

If CLL has taught me anything, it has taught me that we are all dying, some of us have it thrust in our faces every day, others only know it as an abstract thing. I used to confront this like the rest of the world, as a distant possibility; not now.

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We don't know if it's Richter's transformation, rapidly progressing CLL, a new cancer, or something else.

My only 'B' symptoms is that I'm tiring a bit earlier than I was a few weeks/months ago.

I'm not buying extra supplies that I might need 'someday'. That's a waste of money.