Then, I would go to clltopics.org and read the material on newly diagnosed.

I am sorry to find that you have been diagnosed with CLL/SLL and can certainly understand the shock that you are feeling. I think everybody who gets diagnosed with a serious illness initially experiences feeling of numbness. Sometimes this evolves into anger, which is finally replaced with acceptance. Once you are at the acceptance stage you can then move forward.

As to what questions to ask a doctor, I tried to focus on possible treatments, how often my blood should be monitored, what symptoms should I take seriously and how to get further information.

My situation is somewhat complicated because my flow cytometry uncovered markers for a T cell leukemia but was unable to locate a clonal population. Despite this, my hematologist is pretty sure that I have either a leukemia or lymphoma that will eventually reveal itself. I am in no hurry. Unfortunately, I also have anemia and neutropenia that have caused me lots of problems.

I am so sorry for your DX.Feel free to join us at www.cllcfriends.com for more info and support.Also Dr. Terry Hamblin,CLL Specialist is there to answer your questions!

I've been watched for awhile now as they try to figure out if I have a B-cell or myeloid problem. Last May, they thought something was stressing out my myeloid cells in my marrow--as they were abnormal-looking and CD34+--and they wanted to check for clonal B-cells due to a CD5 marker. In October I had yet to throw a clone.

My flow off peripheral blood from a couple weeks ago is much worse than a year ago and it appears it is an indolent B-cell problem, slowly developing. The flow results look very similar to B-SLL but I still have yet to throw a clone--unless it is hanging out in my nodes since they've only been working off marrow/peripheral blood. I've never had a FNA of a node or a node biopsy as my nodes--thus far--are not swollen but I have all the B syptoms of an indolent lymphoma/leukemia. I'm curious if our flow results are the same? I checked mine from last year against Joe's (Wobbles) as he is pre-leukemic with a lymphoproliferative disorder.

As for the DX, my aunt has CLL and my grandfather had either CML or CLL. With SLL/CLL, it is usually very indolent. My aunt has had CLL for 15 years without treatment, and she was told (as she is older) she would probably pass from something other than her cancer.

Also, be sure your hem/onc checks for the CD38 on the malignant B-cells (those positive for CD5/CD19) from flow cytometry off peripheral bood. If you have less than 20%, this is good--meaning your case is more indolent. More than 20%, chances are the disease might be more aggressive. ZAP70 is another one to check, too. My CD38 on my CD5/CD19 B-cells was 15%.

It is scary, but be assured that many live very well with the more indolent lymphatic cancers; it is more of a nuisance until--hopefully years down the road--one must need some chemo to knock it back. Hopefully by then, medical science would have found something to cure the disease versus just treat it.

Regards,

Sue

I know your mind is swirling with the news, but it's important to understand what treatments are available and ask questions. My mom is an oncology nurse so she set my mind at ease a lot, but it was still tough.

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Originally posted by dkvpv:
Hi Deb:

I am fairly new to allof this also, dx on 01/18/08 with sll/cll. I am utilizing MD Anderson and after testing I am on Wait & Watch-a little bit unnerving until you learn the logic behind this. YOur Dr. will explain the test results when you meet afterwords. Be prepared to take notes at this meeting-I brought a small recorder that I got permission to use. As for what questions to ask, I found that these sites help prepare you for what questions to ask, but after weeks of educating myself about cll, I will have many new questions at my next meeting.
This is a great site to learn about cll, post questions, and interact with other people with the same malady.

Other really good sites are clltopics & cllforum. You are in our prayers! Regards, Brian
Just got the test results back from my flow cytometry which confirmed CLL/SLL. I'm a little confused about the SLL part, but anyway I have a CAT scan scheduled for this week and a bone marrow bx scheduled for next Tuesday, Then my Dr. said we would sit down and talk. I'm very scared and numb. What should I expect, what should I ask?

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