Mantle cell lymphoma: How long do I have? What's next?

Good morning, @denyelle18. Congratulations on being in remission for 2 years! It’s a wonderful feeling when you get test results back with no sign of disease. But I also know it can sometimes feel like you’re waiting for the proverbial other shoe to drop. It’s important to always stay focused forward and try not to let those thoughts take up a permanent location in your head. They can interfere with your enjoyment of the life you have right now!

No one can really answer that question of what’s next because each person’s experience will be different. You’ve had great success with the chemo treatments to put you into remission. How long a remission lasts can be difficult to predict and from what I understand it can depend on the original risk factor of your disease whether you were in the slow growing or aggressive category.
However, if your mantle cell lymphoma does make a reappearance, there are several types of treatments available such as targeted treatments, chemo, immunotherapy, maintenance, Car T cell therapy or a stem cell transplant. So there are options ahead of you.

I found a couple of very good articles for you that explains MCL and treatments. https://my.clevelandclinic.org/health/diseases/24030-mantle-cell-lymphoma
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https://www.mdanderson.org/cancerwise/what-to-know-about-mantle-cell-lymphoma-symptoms-diagnosis-and-treatment.h00-159385101.html
We also have several members in our forum with MCL. Two discussions to get your feet wet would be this one with @angelu94 @arbutus @shirlpat and many more members:
Mantle Cell Lyphoma:
https://connect.mayoclinic.org/discussion/mantle-cell-lymphoma/
And this discussion: Just diagnosed with Mantle Cell Lymphoma and looking for input with @nhlbob
https://connect.mayoclinic.org/discussion/just-diagnosed-with-mantle-cell-lymphoma-23-and-looking-for-input/
How often do you have followup blood work? What has your hematologist mentioned about the success of your treatment?

I was diagnosed in Jan 2023. I had a lump in my left bicep and a biopsy found the MCL. I went to MD Anderson for a little over a month and tests determined it was only in a lymph gland in my left armpit. Nothing in the blood, bone or anywhere else. I was very lucky (I guess) I then went to Moffitt in Tampa where I had a monthly Rituxin infusion, monthly bloodwork and 420 mg imbruvica per day. All was going well and now it is bimonthly with a PET scan every six months. Tomorrow (Feb 5, 2025) I go for my bimonthly infusion and bloodwork. I dont know how it will turn out but so far it seems to be going well. I wish I knew what the future held and wish I was able to stop the meds. They seem to make me very tired and I bruise so easily. I was taking brukinsa for quite a while but it killed my stomach and my Dr was able to get me back on imbruvica. I truly hope everyone fights the fight and is successful. Best of luck.

In 2015 I was diagnosed with aggressive blastoid mantle cell lymphoma (MCL). Prognosis was bleak but I was very fortunate to benefit from emerging blood cancer treatments. I had an autologous stem cell transplant and was in remission for 7 years until 2022 when a tumor was detected below my brain. I underwent CAR-t therapy and am currently in remission. Both treatments were performed in Seattle at SCCA/Fred Hutch. By the way, I’m currently 76. So what’s next for us, hopefully many more productive years!
Should my MCL re-emerge, my oncologist assures me there are treatments currently available and new ones in clinical trials I’m in new charted territory. I cross my fingers whenever I get a blood test or scan.
These past 10 years have been a challenge, but am grateful to experience few adverse treatment side effects and had manageable adjustments (hearing loss and balance issues). Being immunocompromised is frustrating (limited my social contact and am very susceptible to infections). I am accepting of the cards I’ve been dealt and consider myself very fortunate to have this extended time to be with friends and family.

Welcome @geoff46. What did you find out at your recent appointment? Any changes?