Anyone else have Mantle Cell Lymphoma?

Unfortunately, my health is deteriorating. I have a cancerous-looking lump on my pancreas, and they're afraid I wouldn't survive a biopsy because of my heart condition. As for my MCL, I got a Deauville score of 3 on my PET scan, which I'm told counts as remission.

I like to read papers, and I've been reading quite a bit about MCL. Remission is common, with some sources saying that about two-thirds of patients achieve complete remission. My treatment regimen was acalabrutinib, bendamustine, and rituximab—the regimen studied in the ECHO trial. With this treatment, remission length can vary considerably, with median progression-free survival of about 66 months.

To the cancer research community, a "cure" would mean that the probability of a patient being diagnosed with MCL again eventually becomes no greater than the probability of someone in the general population developing MCL. MCL is a rare cancer, so that sets a very high bar for a probabilistic "cure."

I was diagnosed with MCL accompanied by a TP53 mutation a year ago and have been on a "watch and wait." Because of rising lymph counts, I am in all probability going to be starting some sort of treatment in the next month or two, depending on CT/PT scans in October. I am not eligible for a bone marrow transplant because of my age (78) so have been very interested in the array of potential treatments. The discussions have been most informative. Thank you for sharing!

Hi @susanlmaguire, Welcome to Connect. Looks like there have been some changes with your Mantle Cell Lymphoma and you’ll be starting treatment soon. Has your doctor discussed the options with you?

Yes, diagnosed April 30th. I'm in a clinical trial taking Nemtabrutinib pills once a day and monthly infusions of Rituximab. So far, the lymphoma has shrunken considerably.

@loribmt
I am scheduled for blood work, CT/PET scans October 8th. The possibility of a clinical trial was mentioned at my last visit to Mayo on July 16.

I was just diagnosed with MCL 4 months ago and am on a watch basis right now. Lot of fatigue and easy bruising but otherwise no problems, Glad to meet others with this problem.@JustinMcClanahan