Re: Staging CLL and SLL, and a couple of other things

May 16, 2004

Also, it is good to keep in mind that with CLL/SNL one can go form a later

stage, e.g. lV back to RAI stage 0 with treatment.

Dan Hill

Staging CLL and SLL, and a couple of other things

From everything I've read, CLL and SLL are basically the same thing

and are treated in the same way. Dr. Coutre, in his telephone

conference lecture, was asked a question about this. He said cells

are considered to be leukemic (as in CLL) if they circulate in the

blood. Lymphomas stay in the lymph nodes. If you have mutant B cells

that fit the profile for CLL wandering around in your peripheral

blood, you have CLL.

As to staging - and the Rai system has four stages for CLL -- it's

important to keep in mind that staging was developed more than three

decades ago when doctors had few tools to understand the disease. So

they looked for obvious measurable things. While staging remains

important, we now have cytogenetic testing such as FISH (flouresence

in-situ hybridization), as well as tests for such markers as CD 38

and ZAP-70, that can give us a more detailed account of what to

expect. To solely rely on staging is a mistake. This is not your

father's CLL (with apology to Oldsmobile.)

I also noted a comment, attributed to the MD website, that

one has only nine months to live if refractory to fludarabine. I

personally don't like one-size-fits-all " time frames, " and, at any

rate, there are new treatments that are changing such statistics.

With the advent of Campath, patients now have an alternative if

fludarabine fails. And there are new frontiers in immunotherapy -

read the " round-headed kid " articles at www.clltopics.org -- that

could mean avoiding fludarabine and the harsher chemo drugs

altogether.

We live in interesting times for CLL (remember the old Chinese curse).

Arenson

47, dx '03 Stage 2, 8x Rituxan '04, FISH test '04

May 16, 2004

You are absolutely right. I posted the comment about 6 - 9 months to live for

patients refactory to Fludara. One-size-fits-all time frames don't fit any

better than on-size panty hose and that was the point I was trying to make. I

took the article from MD to my first appt with Dr Coutre and asked if

this applied to my specific case. He said yes that was about what I could

expect. Which actually meant 3 - 6 months for me because I had finished Fludara

3 months prior. That was in January of 2000. According to my calendar I've

beat the experts odds by 4 years and my last bone marrow biopsy in June 2003 was

normal. I have no evidence of Leukemia in my bone marrow. Campath did it for

me. After 6 weeks of treatment I had complete response. There are advances

being made every day. New drugs being tested, using combinations of drugs that

haven't been tried previously and even Green Tea. This disease doesn't have to

be a death sentence any longer.

My roll model was a elderly gentleman who was my hay broker. I had no idea he

had ever been sick. At 75 years old he looked and acted 10 years younger than

his years. After I got to oknow him he told me about having Leukemia. You

wouldn't know he had ever had a sick day. At one point he was in the hospital

and the Dr told his daughter to make his funeral arrangements that Pete wouldn't

make it through the night. 13 years later Pete died of a stroke.

Time frames like that are only statistical compulations. They have nothing to

do with how an individual is going to respond. Campath only gave me a 33%

chance, but I figured someone has to make up that 33% and I might as well be one

of them.

Sue

possumfestival <possumfestival@...> wrote:

>Snip