Mantle Cell Lymphoma...need best treatment options

[DawnRedwood]

Can anyone help with Mantle Cell Lymphoma and what treatments are available? I know this forum is for CLL/SLL but does anyone have any information on this? A good friend was diagnosed yesterday, Stage 4, and he says he won't take the radiation/drip treatment.

[SofiaDeo]

The Lymphoma Research Foundation is a good place to start:

lymphoma.org/aboutlymphoma/...

If you have a medical/technical background, here's a mid 2020 journal article on emerging treatments:

pubmed.ncbi.nlm.nih.gov/325...

The journal article indicates at least some docs are trying BTK and BCL2 blockers instead of traditional chemotherapy. He may want to look for a research (or at least one following research trends) hem-onc willing to forego the older treatments in favor of the newer targeted ones.

If he's near certain medical centers, he might be interested in a clinical trial:

clinicaltrials.gov/ct2/resu...

[DawnRedwood in reply to SofiaDeo]

Thank you for your response. I'll check them out and send them along to him and his wife.

[cllady01 Former Volunteer]

The 2021 NCCN Guidelines for Mantle Cell Lymphoma is a printable booklet with an area on treatments that gives the latest treatments, and several are proposed that have no infusion or radiation mentioned.

Of course, the treatment anyone receives is based on the specific patient profile and overall health.

nccn.org/patients/guideline...

[DawnRedwood]

Thank you!!!! Much appreciated.

[lankisterguy Volunteer]

There is one BTK inhibitor, similar to Ibrutinib, approved to treat MCL that is not yet approved for CLL. brukinsa.com/

webmd.com/drugs/2/drug-1783...

At this point it is recommended for 2nd treatment, but under FDA rules any doctor could prescribe it off label - insurance and the doctor's expertise / knowledge would be the hurdles to using it as a first treatment, but that would be better than no treatment at all.

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Here is a link to a posting 4 months ago on MCL: healthunlocked.com/cllsuppo...

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And this link shows the 127 previous times the word "Mantle" was mentioned in a posting. You can skim through these to find useful discussions with more info. healthunlocked.com/cllsuppo...

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Len

[DawnRedwood in reply to lankisterguy]

Thank you so much!!! I will definitely pass this on to our friends. There are a few treatments for Mantle Cell if Imbruvica isn't working.

[kaymack]

I have a cousin with Mantle Cell Lymphoma. He had to have his spleen removed at diagnosis and then had a stem cell transplant using his own cells. The did well for ten years, but then relapsed. He then went on to have a second stem cell transplant using his 75 year old brother's stem cells. Five years on since that, he has some graft versus host disease but is still working at 64.

[DawnRedwood in reply to kaymack]

That's amazing!!! All the best to him!!!

[Quansetgirl]

I was diagnosed with MCL this past June. Because I have the p53 mutation, I was not a good candidate for traditional chemo. Instead I entered a clinical trial at Mass General that uses targeted immunotherapy (obinituzumab, Zanubrutinib and Venetoclax combo). I reached the desired goal of minimal residual disease in only two months! This means that using the incredibly sensitive flow cytometry testing, no abnormal cells were detected at all. You can imagine my relief! My spleen also returned to a completely normal size. Full remission. The study is two years long, so I will remain in this protocol the whole time. My docs assure me this is a condition I will manage - there are additional tools to use to keep this in remission should it ever return, with more new therapies coming along that show tremendous promise. There is lots of hope!

[DawnRedwood in reply to Quansetgirl]

WOW! That's wonderful! Can't wait to tell our friend about all the various treatments!!!

[Suzanne10668]

hi Dawn my husband has mantle cell lymphoma he’s doing chemo now then a stem cell transplant. We have learned a lot from joining a local cancer support group and I follow all the lymphoma experts. You’re in the US and there’s a mantle cell expert in Houston Dr michael Wang. My husband sees the best lymphoma dr in Canada it’s very encouraging the progress they are making. Don’t give up hope .