Anyone else have Mantle Cell Lymphoma?

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

@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.

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.

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?

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!

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'm tagging fellow members like @randman @balvare @wileywright @steiner @paulhite @ffb1234 to reanimate this discussion about mantle cell lymphoma and get you connected.

@balvare @wileywright @steiner @paulhite @ffb1234, any updates? How are you doing?

@vivianr66, how are you doing on chemotherapy?

YES!! I was diagnosed in May and have begun chemotherapy at the end of July. I have R-CHOP and then R- DHAOx alernatingly, for 6 times. I live in Austria. Please contact me, I have been looking for people to share with 🤗

@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 🤗

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?