Diagnosis switched to mzl

[Sunfishjoy]

Has anyone experienced being diagnosed initially with cll then told they have a subtype if mzl?

[81ue]

ummmmm...yes. I had leukemia, but it looked different.... so then was told it's MZL...but it still looked different.....then a fancy university lab took a month and a half looking at my lab samples trying to figure it out .... and landed on B-PLL because what I had was looking like CLL ....but also it looked a bit different.

[Hidden]

there is one on this site that was diagnosed as mzl then changed to b-pll. maybe she'll respond. I also have b-pll. sometimes these things are hard to diagnose.

[81ue in reply to Hidden]

..that be me

[curlscurls]

Yep me! We've got to talk! I just read your history.

I'm symptom free. 23+cm spleen. Minimal to no nodes. BM involvement. Blood involvement. Spleen uptake on PET is 3.3 SUV (low). Splenetic is pretty agreed on, but with some curiously aggressive markers.

I was told originally MLB-CLL but it definitely wasn't a match. Then worked with a doctor at a teaching hospital that didn't work out (no one else agreed with her approaches.) I just finished a bunch of 2nd opinions. Still deciding what treatment plan to use from here including wait and watch.

You're lack of blood involvement is a nice positive sign.

Mine is CD5 negative and CD10 negative. It was CD23negative on one test, positive on another, neutral on a third. Do you know the FLOW markers on yours?

If mine is a MZ, it's splenetic. It's not nodal or extranodal (MALT). I'm curious who you saw in NY. I saw a couple people. But that's better in direct messaging I think.

[Sunfishjoy in reply to curlscurls]

Sending a message

[Judyanne]

Hi Babsnyc, I was originally diagnosed with Sll. A biopsy revealed it is extranodal marginal zone. See LRF’s summer newsletter re: international conference held on mzl to learn more about this type. Info from conference should be forthcoming. Feel free to contact me if any questions.

[Sunfishjoy in reply to Judyanne]

Thank you. What is lrf? And how can I read newsletter. Is there a link you can share?

[Judyanne in reply to Sunfishjoy]

Hi, LRF is Lymphoma Research Foundation. The newsletter is on their website I believe under education or resources. You can also sign up to be on their mailing list. I will try to post the link to the newsletter. There is also a LRF conference this October in Chicago with a breakout session for mzl.

[Sunfishjoy in reply to Judyanne]

Great to know. Will definitely read. Thanks again.

[Judyanne]

lymphoma.org/wp-content/upl...

Here is the link to the summer 2019 LRF newsletter. See page 4 and 5