IGVH V3-21 and IGHJ Family J4

[Sunfishjoy]

The vote is not in yet about my diagnosis--CLL or more likely SMZL. Meantime one lab reported this morning that I am unmutated and the gobble degoop in my title. I found one smzl article online that said mutation status is not prognostic for smzl (especially since rituximab) but would appreciate hearing from anyone who might help me understand what this means if it means anything at all. Thank you!

[81ue]

IGHV3-21-expressing B-cell chronic lymphocytic leukemia (go to the 'read paper' arrow below the page and scroll down to read)

academia.edu/16705091/Compr...

[Sunfishjoy in reply to 81ue]

Thanks 81ue. I'd be lying if I said I understood this paper but I gather the findings are that V3-21 is a neg. prognostic marker for CLL. If I have MZL would that hold? I will put this on my list of questions for the specialists.

[81ue in reply to Sunfishjoy]

There are many types of 'poor markers' and I agree that the diagnosis will be important, and your other markers will be looked at for help to figure out what it is and when to start treatment (blood lab numbers, enlarged nodes, enlarged spleen etc. - many different 'markers').

Here is another article that explains some of the common markers that are looked at. For example this article says Marginal zone lymphoma is typically CD5 negative. But what if you aren't the "typical" case for either MZL or CLL ? Then one marker isn't going to tell you which one you have.

medscape.org/viewarticle/83...

[cllady01 Former Volunteer]

Babsnyc, while that gobble-de-goop you cite is dealing with the immune system there is nothing that we can ascribe anything to at this point. The immune system mutations will give a prognostic picture when you get a diagnosis.

I am thankful you have 2 specialists working to get your situation sorted, and in time (aye, there's the rub--frustrating waiting) you will have a clear picture and know what the next move will be.

I wish I could tell you something that would be clear and distinctive, but I can't.

Most studies are of a given diagnostic picture and any related immune system characteristics will be related to that diagnosis.

Best wishes and I hope you get the information soon and hoping you are doing well with handling the stress of the waiting to sort. If you are feeling well and the weather will permit, it might help to walk a bit to loosen up both mind and body.

[Sunfishjoy in reply to cllady01]

Thanks. I get it now--accurate diagnosis takes months not days or weeks when it's in the bone marrow, not the blood or lymph nodes.

[PSP52]

Hi Babysync,

I understand your anxiety about learning you have a blood condition. And, you don't really know what the final diagnosis is. I have had CLL for 4 years based on looking at past blood test results and have known that I have had CLL for 2 years. There are many diagnostic tests you will probably have. Two important ones are your FISH test which is done in the U.S. and the Flow Cytometry test.You might have already had them. My markers are relatively good except that I have the IGHV3-21 expression. As a librarian I researched a number of sources and databases and there are very few articles on the IGHV3-21 expression. My oncologist, whom I am seeing tomorrow, contacted a number of CLL specialists and the specialists had little to say on IGHV3-21 expression. They all said though that the most important thing to follow is the doubling time. The article that 81ue provided is from the scholarly journal Blood but it was written in 2006. So many things are evolving for all of us in new treatments.

If you can, try to take deep breaths and try to visualize positive images. Mindful meditation.

[avzuclav in reply to PSP52]

Hello PSP52,

As a fellow user of IGHV3-21, here's what I've found most helpful. Only about half of IGHV3-21 cases are aggressive (subset #2):

bloodjournal.org/content/12...

If you have subset #2 and wish to avoid chemo, this paper can help your case:

ncbi.nlm.nih.gov/pmc/articl...

CLL-expert clinicians don't have much time to devote to this because the new drugs work so great for everyone. Works for me!

[Sunfishjoy]

Hi and thanks for the tips. Also I had not realized the Blood article was from 2006–many light years ago in terms of these illnesses.

[Obiecat]

Hi Bab, Have you had your diagnosis confirmed yet? I am in the uk and have had a flow cytometry test results that indicate MZL/ LPL type. I am positive for Kappa, CD19,CD20,FMC7 and CD79d - Negative for CD5, CD10, CD23,CD200,CD38, Igm CD11c,CD103,CD25 - low grade B Cell NHL. I have had no other tests but can see that the types indicated are rare? trying to find a suitable consultant. What tests are they doing to confirm your diagnosis. Any information would be helpful. Many thanks

[Sunfishjoy in reply to Obiecat]

Hi Obiecat. As you probably know mzl is a diagnosis after other diagnoses are ruled out. Two “world experts” think I have splenic mzl and am monitoring me every three months. I have no symptoms but my spleen was enlarged as seen in a cat scan last May. I believe I will have to have periodic ultrasounds and ct scans to monitor spleen.

That’s really all I know now. Hoping to get clarity in October.

Are you feeling well? I hope so.

There is a Facebook group you can join for mzl. There are some kind and informed folks there you might get good info from.

[Obiecat]

Thank you Babsync, Why does it take so long to diagnose? I hope you get your diagnosis soon. My abdomen is somewhat swollen and a few pains, and I noticed today that I have red spots ( Petechiae) all over it! Plus a bit of numbness in my fingers and a stiff neck.

Otherwise fine. My white cells are still increasing but no other symptoms.

If it is a process of elimination- what do they do to eventually decide? I’ve got a consultation booked for Thursday.

I may also have another rare type so I hope they find out definitely.

I hope all goes well with you.