I am living with MCL. I went through 2 (tumor) "debulking" cycles where I would get infusions with Bendamustine and Rituximab. Then I got a PET and my oncologist said I can drop the infusions. I am taking Calquence twice a day and I expect to be taking it for life.
I've been reading a lot of MCL literature and instead of remission, they talk in terms of PFS (Progression Free Survival). This means that if the disease cannot progress or even is in retreat, that is enough to justify the treatment. And PFS can last for years. I'm in PFS and I call it a win. They tell me it's possible that I might go into remission enough to drop that Calquence for a while, but then I would be closely monitored in case it comes back. I feel like I'm winning; but I also feel that MCL will never make it the the rear view mirror.
@paulhite thanks for sharing. I am also taking Calquence only after 2 infusions of rituxamb. I am in metabolic remission & hope to stay there for while. I have had very minimal side effects to the Calquence.
I was diagnosed with stage III MCL in 2015. My treatment was 3 round of RCHOP and RDHAP. I was 60 at the time. I declined stem cell transplant. I asked Stanford Medical Center for the data on improved survival rates after transplant. It looked negligible to me. Not to mention I was "DONE" with chemo.
Just had a brain MRI for something unrelated, it didn't show anything useful other than enlarged lymph nodes. My oncologist had me get a Petscan. Haven't heard back yet on the results.
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?
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?
I did have a autologous bone marrow transplant. My stem cells were harvested, preserved with DMSO and frozen. They were reinjected after my three week period of isolation. I was fortunate to be treated by Dr Shaughnessy at the Methodist Hospital bone marrow transplant unit in San Antonio. My gut tells me to let sleeping dogs lie...
It isn't going to provide you with any real comfort, but when I was getting chemo I would get a fever exactly 7 days after the infusions and I'd have to be admitted to the hospital for antibiotics. I didn't do well with rituxan for maintenance either.
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@paulhite thanks for sharing. I am also taking Calquence only after 2 infusions of rituxamb. I am in metabolic remission & hope to stay there for while. I have had very minimal side effects to the Calquence.
Hi All,
I was diagnosed with stage III MCL in 2015. My treatment was 3 round of RCHOP and RDHAP. I was 60 at the time. I declined stem cell transplant. I asked Stanford Medical Center for the data on improved survival rates after transplant. It looked negligible to me. Not to mention I was "DONE" with chemo.
Just had a brain MRI for something unrelated, it didn't show anything useful other than enlarged lymph nodes. My oncologist had me get a Petscan. Haven't heard back yet on the results.
All my best to everyone,
Randy
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1 ReactionHi @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?
I did have a autologous bone marrow transplant. My stem cells were harvested, preserved with DMSO and frozen. They were reinjected after my three week period of isolation. I was fortunate to be treated by Dr Shaughnessy at the Methodist Hospital bone marrow transplant unit in San Antonio. My gut tells me to let sleeping dogs lie...
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2 ReactionsIt isn't going to provide you with any real comfort, but when I was getting chemo I would get a fever exactly 7 days after the infusions and I'd have to be admitted to the hospital for antibiotics. I didn't do well with rituxan for maintenance either.
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