Recently diagnosed at 36 years old - but uncertain whether I have CLL or Marginal Zone Lymphoma

Hello to all. I stumbled across this forum and found it to be very informative. I was diagnosed about 6 months ago at 36 years old. Currently the specialists believe that it is either CLL or a low grade B cell lymphoma (marginal zone). They say they do not know for sure yet. CD 5 and CD 10 negative. However FISH revealed trisomy 12 and 3q. Lymphocytes just rose above 5,000 in CBC done last month. Just on watch and wait protocol with follow up again in march at Moffitt cancer center in Tampa florida. Research online seems to show trisomy 12 can be classified as a little more progressive disease. Is this true? Anyone else trisomy 12 and 3q in the FISH analysis? How about CD 5 and CD 10 negative?

I am married with a five year old and three year old boys.

It had been difficult to grasp as I am in great shape but learning to chill out with it and live life to the fullest each day and not get caught up in the great stresses of life.

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  • A good philosophy Smarker. You are very young in th CLL world, if that is what they decide you have. On a positive note, you have youth on your side and many new and exciting treatments coming out all the while. You sound positive, a good start. Let us know how you get on.

    Peggy

  • Thanks so much for your reply and the information. I am looking into it. I double checked the bone marrow biopsy results and the FISH analysis was + 3q and trisomy 12.

  • Gain on 3q is rare and so is CD5- and CD10-, which tend to lean to marginal zone lymphoma, but there is a bit of overlap with CLL, and certainly trisomy 12 indicates CLL

    T 12 is on the better end of FISH markers, but they are just a prognosic indicator, not a predictive indication. As well, over time like years, FISH results can and do change.

    You have a good outlook it will serve you well years from now... being young, although it may sound strange, offers a very positive benefit.

    ~chris

  • Thanks Chris! How often will they re evaluate FISH for changes to prognostic indicators?

  • FISH used to be done a year or so after diagnosis, and tne trend now is to move it until before treatment.

    Sometimes it is done twice, but outside the U.S. it is often done once before treatment... clinically it separates out 17p- deleted ...

    High risk patients might have it done more often

    ~chris

  • Welcome to the group. Glad you are positive it is important. as you have seen group members are keen to assist newcomers. I have not got a lot of experience with treatments and diagnosis but I recommend reading and listening to videos on and through this site. Comfort with and knowledge about CLL has made my cancer journey so far much more tolerable.

  • Thanks so much for your reply! You are so right

  • I am T 12 but no 3q. I am high risk because of that and some other negative markers (which you don't mention here). I had almost 4 years before I needed treatment and am doing very well on ibrutinib. Many of the prognostic indicators seem to be in flux because of all the new treatments being studied. We all walk around with our fingers crossed!

    Enjoy your boys!

    Virginia

  • That is true! Fingers crossed every day! Some days I still think how ridiculous this is for me to have to worry about this at my age. Other days I think that it is an unfortunate blessing that is really helping me to bring some positive change to my life and slow down appreciate each moment! Sounds cliche but it is working for me.

    If I can ask, what other negative markers did you have in addition to trisomy 12? I guess I am understanding trisomy 12 to be a kind of intermediate prognostic indicator?

  • CUrrent standard FISH markers in order of good to not so good are

    13q, T12, Normal, 11q, 17p

    There are sometimes others used, but they are special cases...

    It is quite possible to have two markers as well as translocations... bits broken off one chromosome and added to a second... that's what trisomy is...

    Then there are single and double 'hits' single or double alelles, and it gets exponentially more complex...

    ~chris

  • Smarker wrote: Research online seems to show trisomy 12 can be classified as a little more progressive disease. Is this true?

    Hi Smarker,

    Your question should have a simple answer, but unfortunately it does not.

    I'm Trisomy 12 and UNmutated. In my case, my CLL progresses quickly but responds well to monoclonal antibodies like Rituxan, but the remissions are very short. (I've needed treatment 4 times in 9 years since diagnosis). I also had good results with Idelalisib and great results with Venetoclax so far.

    There is some data showing that some Tri 12 Mutated folks can get very long remissions from Chemo (FCR), since some have not had their CLL reappear in over 10 years.

    The CLL expert Javier Pinilla-Ibarz, MD, PhD, Moffitt Cancer Center, Tampa or Asher A. Chanan-Khan, MD, Mayo Clinic, Jacksonville can certainly guide you on additional genetic testing and sorting out the CD 5- quandary. But it's likely that your own history of blood tests will be the most accurate predictor of when you might need treatment.

    As neurodervish suggested "Tracking your blood test results over time will help give a picture of disease progression. This is more important than the numbers on a single occasion".

    healthunlocked.com/cllsuppo...

    The CLLSociety website has great written resources cllsociety.org/cll-101/ and Patient Power has great video vignettes like

    patientpower.info/video/und...

    and all the other subjects here:

    patientpower.info/bio/susan...

    Len

  • Thanks so much for the information. I have a follow up at Moffitt in Tampa in March and I plan to look into seeing Dr. Pinilla-Ibarz.

  • With your absolute lymphocytes above 5,000, you are just into CLL territory. Given the uncertainty of your diagnosis, I'd suggest searching out a CLL/NHL specialist for a second opinion.

    The link below is to a list of CLL specialists recommended by Dr Jeff Sharman, a highly respected NHL/CLL specialist who practices in Oregon. In his post (link below), there's also a list of doctors recommended by CLL patients. These doctors may not be CLL experts, just doctors that CLL patients feel understand their CLL: cll-nhl.com/p/cllnhl-doctor...

    Here's another list of CLL Physicians recommended by CLL Society Readers: cllsociety.org/toolbox/cll-...

    I've also changed your title to represent your diagnosis uncertainty and deleted your unanswered post after copying the text here:

    Hello all! I was recently diagnosed with either a marginal zone lymphoma or CLL--they are uncertain which exact one because it is stage 0 and there are no swollen nodes or anything to biopsy to be sure. Phenotype is CD 5 negative and CD 10 negative FMC7 and Pax5 positive and CD23 positive. FISH shows +3q and trisomy 12. The trisomy 12 is what makes the doctors think it could be CLL but the +3q seems to be more common in certain types of marginal zone lymphomas. CLL with negative CD5 and negative CD10 can happen the doctors say but it is kind of rare. The doctors tell me that either way it does not make a difference because the protocol is the same right now--watch and wait. I have been doing pretty good in calming myself down and learning to enjoy life and my two young boys (5 y.o and 3 y.o) during this time, but it is hard because I want to know what it is exactly. Absolute lymphocytes rose above 5,000 in last blood draw in early December and I go back for follow up in March. Anyone on here with marginal zone NHL and trisomy 12 and +3q?

    Any thoughts/advice on certain other tests to discuss with my doctor to try to narrow down the phenotype more precisely?

    Neil

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