Does anyone have CLL and MCL?

[Conehead]

Does anyone have CLL and MCL? If so, what types of treatment options are there? I was first diagnosed with CLL than 7 years later I was diagnosed with MCL. As of today I have had no treatment for either.

[Hidden]

i suspect you were misdiagnosed or that that you have a difficult one to diagnose.

i am told i have b-pll-however my actual blood work does not match the official 'description' for b-pll.

you probably have bloodwork that does not match exactly so they pick the closest.

[cllady01 Former Volunteer in reply to Hidden]

You might be interested in the following article:

Variable combinations of lymphomas have been reported, however, a composite of MCL and CLL/SLL is rare with as low as 20 cases being reported so far [8–13]. The distinct types of lymphoma can be diagnosed by compilation of morphologic, immunophenotypic, and genetic studies. Immunophenotyping is usually done by immunohistochemistry or flow cytometry, the latter may even be superior in uncovering 2 distinct tumors in the same specimen, in particular, when immunohistochemistry interpretation may not be clearly discriminating.

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

[AussieNeil Partner Administrator]

It's extremely rare, but not impossible, to have both MCL and CLL. They are similar B-cell cancers and can sometimes be hard to differentiate. You would be wise to seek a second opinion from a specialist who sees both lots of CLL and MCL patients.

Because these B-cell cancers are so similar, they can be treated with the same drugs, but doses may vary. Ibrutinib was first approved by the US Food and Drug Administration (FDA) on November 13, 2013, for the treatment of mantle cell lymphoma, but with 560mg per day, not the 420mg subsequently approved for CLL. Venetoclax has also been shown to be effective against MCL.

Neil

[cllady01 Former Volunteer]

The following tells you the rareness of this diagnosis, so your Dr. is on top of the situation which is the most important aspect of you care.

If you are able to talk with your Dr. and get reassurance, it would be helpful to you. It is true that both a stand alone CLL and a Stand alone MCL diagnosis is often treated with Ibrutinib as one possibility. Both CLL and MCL are indolent and treatment is sometimes years after diagnosis. You are in your 7th year I think you have said. It appears to me you can rest easy with the Dr. you have doing what needs to be done. If you can maybe talk with an RN with any questions (if Dr. is not as conversant as you would like) that can be a good thing. I can get my Drs. RN to say more than he does, while he is a brilliant researcher and clinician, he is a bit reserved.

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

Variable combinations of lymphomas have been reported, however, a composite of MCL and CLL/SLL is rare with as low as 20 cases being reported so far [8–13]. The distinct types of lymphoma can be diagnosed by compilation of morphologic, immunophenotypic, and genetic studies. Immunophenotyping is usually done by immunohistochemistry or flow cytometry, the latter may even be superior in uncovering 2 distinct tumors in the same specimen, in particular, when immunohistochemistry interpretation may not be clearly discriminating.