Mantle Cell Lymphoma

[writepa]

My husband just got the flow cytometry today. One of the markers CD23 is negative. I met the doctor and he diagnosed my husband with Mantle Cell Lymphoma. Although still need Fish test to confirm but he seems certain. As MCL explains why it is so sudden and the spleen is big. What a difficult path a head.

[AussieNeil Partner Administrator]

May I suggest that you wait until you get your husband's FISH and IgHV mutation status results from M D Anderson? The correlation between CD38 and IgHV is fuzzy. We have members who are CD38 positive who are IgHV mutated.

Neil

[writepa in reply to AussieNeil]

Yes, I will. thank you Neil.

[writepa in reply to AussieNeil]

Sorry but I also read that CLL normally has CD23 positive. If CD23 negative it may be Mantle Cell Lymphoma, which is rare and more aggressive.

[AussieNeil Partner Administrator in reply to writepa]

Well spotted! Actually the positive and negative assignments are allocated by comparing the actual test results against specific percentage thresholds per CD type and those thresholds can vary between labs. The positive/negative CD patterns are then used to determine which blood cancer a patient has, if there is a monoclonal lymphocyte population. See the table Immunophenotypic Fingerprint CD Markers for Variety of B-Cell Cancers here: clltopics.org/PI/Type.html

If your husband is truly CD22 positive and CD23 negative, then it would appear that he could have Mantle Cell Lymphoma. CLL and MCL can sometimes be hard to tell apart. M D Anderson should check his diagnosis in any case, but you would be wise to question his current CLL diagnosis.

I don't know how up to date the information you've been reading about MCL is, but MCL treatments are also improving dramatically As a matter of fact, the second generation Bruton's Tyrosine Kinase inhibitor drug Acalabrutinib, that looks to be better tolerated than Ibrutinib, has been approved for MCL but is yet to be approved for CLL!

Neil

[writepa in reply to AussieNeil]

I met doctor here and doctor said with CD23-, he is diagnosed with Mantle Cell Lymphoma. I'm really shocked. so depressed now.

[avzuclav in reply to writepa]

If it is confirmed as MCL and you are at MDA in Houston, please try to see Dr. Michael Wang. He's amazing and his life's mission is to cure MCL.

youtube.com/watch?v=H4bKoQK...(Not working as expected?)

[writepa in reply to avzuclav]

Yes I will. Thank you.

[writepa in reply to avzuclav]

do you any other Dr beside Dr Wang as he is not availablr until Nov 18?

[avzuclav in reply to writepa]

I've met Dr. Nastouphil and Dr. Steiner, they seemed nice. They work as a team (similar to the CLL docs at MDA) and you'll have access to all the clinical trials. I don't think you can go wrong at MDA, regardless of who you see.

[writepa in reply to avzuclav]

Many thanks. I will try these two.

[writepa in reply to avzuclav]

I have scheduled appointment with Dr Wang earlier on Nov 4. Thank you for your advice.

[AussieNeil Partner Administrator in reply to writepa]

Here is a series of videos of a recent round table discussion about Mantle Cell Lymphoma (MCL) by US MCL specialists. There is active research that should give you and your husband hope if he does end up with a MCL diagnosis:

mdedge.com/hematology-oncol...

[HopeME in reply to writepa]

Writepa

I am so sorry for this turn of events but please don’t despair. There is hope at MDA. Treatment protocols are also improving rapidly for this disease and MDA is a research leader here as well. You must stay strong for your husband. I wish I could do something to ease your trepidation. I hope your travel to Texas goes smoothly. You are in my prayers.

Mark

[writepa in reply to HopeME]

Many thanks Mark

[HopeME in reply to writepa]

Hello Writepa: A doctor diagnosed your husband with CLL and you with no medical training are reading articles and gathering information online and coming up with alternative diagnoses! You veered from Richter’s to Mantle Cell Lymphoma today alone. This disease is very complex even for seasoned medical professionals. It’s obvious that you love your husband deeply but your quest to understand his condition is leading you down what are almost certainly false paths. Please don’t share your hypothesis with your husband and unnecessarily worry him. And promise me that after the folks at MD Anderson allay your fears you will come back and update us so all so we can collectively breath a sigh of relief. I wish you safe travels and positive outcomes. You sound like a wonderful person and a caring wife. Best wishes, Mark

[writepa in reply to HopeME]

Thank you Mark. I hope I am wrong. The Richter is actually my hypothesis, while the MCL is based on flow cytometry test. Our doctor here is very young and not even explain about the CD markers for us, that's why I have to wonder around the web.

You and other people in this forum have been so nice to answer my questions and I'm thankful for that.

[DriedSeaweed in reply to writepa]

I would not be too concerned if your doctor is on the young side. Might be comforting not to have your doctor retire right before any treatment!

There are so many cd markers... you will discover not all of them are of equal importance.

[elkk in reply to writepa]

Hello writpa,

I hope you get some answers soon, and try not to worry too much while you wait, easier said than done I know!

I am CD38 positive and CD23 negative FISH confirmed Atypical CLL

Elkk AU

[HopeME]

Even if he is unmutated, the new novel agents that are presently being used for treatments have substantially improved outcomes for unmutated patients. Treatment options are rapidly evolving and improving. I’m sure you will hear about that at MD Anderson.

Best

Mark

[Shepherd777 in reply to HopeME]

Another good point.

[Hidden]

i 've said before . Don't pay attention to statistics. Novel drugs have only been really available for the past 2 years. Most info is from trials but statistics covering meaningful amount of people don't exist.-especially because they are a done at best every 5 years.

I was diagnosed with b-pll in january 2019 with wbc about 450,000. Info on b-pll was little and totally outdated but the wife and I took it as gospel. then we learned better

[writepa in reply to Hidden]

yes, you are right. Statistics I read is not that wonderful but stories I heard in this CLL forum are really wonderful and encouraging. Thanks for always there to cheer and uplift people.

[Kokobean]

I had a lot of questions about CD38 a few years ago when it showed up on my husband’s bloodwork. Three years later it hasn’t seemed to factor in much. The last time it showed up, the percentage was down. As others have said, much of what we find online is old enough that it doesn’t mean much. The new treatments have changed so many factors it’s hard to keep up.

[MsLockYourPosts Passed Volunteer]

Please don't wander around the web!!!. When I did, 17 years ago, everything said I'd be dead in five years. Newcomers are still finding those same reports today. When I dipped back into searching Dr. Google recently, my hematologist reminded me that when I do that I'm missing one thing - medical school!

cllsociety.org has reliable information and links to other resources. patientpower.info has some excellent videos. If you go to you tube you will also find very informative videos done by individual specialists or panels of specialists (OncLive videos are a good place to start).