Anyone else have Mantle Cell Lymphoma?

@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

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.

Yes, I was diagnosed with Mantle cell Lymphoma 2 1/2 months ago and will be starting CHOP chemo in 2 days. Can anyone tell me what to expect?

Hi @vivianr66 RChop consists of five drugs, (Rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone (R-CHOP) followed by maintenance Rituximab. This treatment has been a standard frontline regimen in older patients with MCL for over a decade, according to ASH publications article https://ashpublications.org/bloodadvances/article/9/9/2302/535660/BR-or-R-CHOP-induction-with-rituximab-maintenance

As with any chemotherapy treatments, quite honestly, there can be side effects such as nausea, hair loss, possibly neuropathy, etc. However most often the side effects disappear after treatment and recovery. If all goes as planned, enduring those early months of therapy may add many more years of a healthy life for you. I was 65 at the time of my treatment for another type of aggressive blood cancer. It wasn't easy but so far I've bought myself another 7 years of a great life that would have been over had I not taken the opportunity.

You mentioned CHOP, so you may not be receiving the Rituximab (the R) portion of the treatment. The treatments generally have a cycle of every 28 days. The first week following, you may begin to feel more fatigue. By week 2 the side effects become more prominent with increased fatigue as blood numbers typically decline. It's normal to feel really sluggish. More importantly is to take your temperature daily to make sure you're not running any fever. As your blood numbers drop (along with the cancer cells) your immune system will be compromised. This makes you vulnerable to infections whether bacterial, fungal or viral. So mask up in public, avoid working in the garden as dirt carries fungal spores. If your temp ever reaches 100.3 you will need to call your oncology team for instructions. That may indicate a neutropenic fever that can come with low white blood counts.

The chemo you're taking does a great job of destroying the rapidly dividing cancer cells. Unfortunately it doesn't discriminate and kills other rapidly dividing cells such has mucosal cells in the mouth and digestive tract, hair follicles, finger nails, etc.
But remember this is temporary and a means to get you healthy again! Our bodies are meant to heal...sometimes they require some extra help.

Wishing you an easy day tomorrow. Though it may be lengthy at the infusion center. Take a little lunch or snack, water, entertainment like iPad, book, phone, etc (and a little extension cord for your charger). If you're having infusions, you'll have a little IV in your arm or hand. But the IV machine is portable so you're not stuck sitting in a chair all that time. You can get up to walk around, use the bathroom, etc.
What has your oncology team told you about your treatment plan? Will you please give me an update?

@loribmt Thankyou so much for answering! I will be receiving RCHOP and RDHAOx alternately for 6 times in 3 week intervals. They also said I will get ibrutinib and rituximab for 2 years as treatment afterwards. I live in Salzburg Austria so it is all in german. I fell very alone with this, so I am really grateful for contacts with people who have cancer also 🤗