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Anyone else have Mantle Cell Lymphoma?
Blood Cancers & Disorders | Last Active: Nov 25, 2025 | Replies (115)Comment receiving replies
Well, I am confused. I was diagnosed with MCL in 2005. I was treated with a regimen called HyperCVAD plus methotrexate and ARA-C. I had this regimen infused once a week for 7 months. I then was hospitalized for a 3 weeks for treatment with high toxicity drugs prior to a bone marrow transplant. I was placed on a Rituxan as a maintenance drug but I could not tolerate it. I have been told I am in remission, or stable, as the doctors like to say, for 20 years now. I have had annual checkups consistently. Recently I moved to Galveston and I see online that MCL is not curable. Surprise to me. I don't have any symptoms that I know of and I am 87 years old. My new, young hematologist wants to do a bone marrow biopsy to determine why my blood counts are so low. They have been like that since chemo. I'm not sure I'm going to do that. Are there any other survivors out there?
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Hi @wileywright From my understanding MCL isn’t considered a curable form of cancer but it can go into remission with treatment. Cancer in remission isn’t the same as cancer that’s been cured. Mantle cell lymphoma can relapse after being in remission for months or years. So you have found the Golden Ticket and have been in a long term period of remission.
You also mentioned having had a bone marrow transplant which would have an impact. Was this an allogeneic bone marrow transplant using stem cells from a donor? Or was it an autologous transplant (ASCT) using your own stem cells? I’m expecting it was the ASCT where your stem cells were harvested. Then you went through a period of chemo to cleanse your marrow followed by a re-infusion of your harvested stem cells to “rescue” your bone marrow from the effects of the chemo. That procedure and the previous treatments prior to the ASCT may have been enough to keep you in remission during this time.
It is problematic (from the doctor’s standpoint) that your blood numbers are low. But if this has been going on since 2005 and you’re in good health at 87 and not having issues, I can see your point about not wanting to rock the boat!
What does your gut tell you?