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?

That is great news to be in remission. I would like to share my story with you. I was diagnosed with MCl in 1999. I was 48 yrs. old. I started treatment with Rituxin, 2001 or 2002. In 2006 my cancer returned. I received an auto stem cell transplant 2007. I was in remission until 2021. My team of Drs. started with some new treatments and when I did not respond to those treatments they recommended the Car T cell therapy. I was 71 when I received this therapy February 2023. I have been in remission for 42 months, post Car T therapy. I have been fighting MCL for 26 years.
Don't give up hope. Life is wonderful.

Hi @crocket Wow, another success story! Thank you so much for sharing your MCL journey with the group! Knowing that CAR T Cell therapy has brought you to a healthy remission from your Mantel Cell Lymphoma is such encouraging news for others with this diagnosis!

It’s stories like yours that can be such a moral booster for anyone who’s newly diagnosed or even a long time patient when hope seems in short supply. Now that you’re a member in our fabulous forum, I hope you’ll be a regular contributor. ☺️
What were your first symptoms of Mantel Cell Lymphoma?

My first symptom was found at 1999 annual physical for work. The Dr. noticed a large lump on the back of my neck. Suggested I see an oncologist. The oncologist did some blood work ordered a PET scan. The PET scan showed multiple sites of uptake. He referred me to a surgeon for biopsy. The biopsy confirmed the cancer and typing confirmed the type. At that time there was no treatment for MCL. Around 2020 Rituxan became available as an experimental treatment. I had several treatments over the next 6 years. I worked full time 50 to 80 hours per week. In the fall of 2006 at a follow-up appointment with the oncologist, she confirmed the cancer had returned and recommended an auto stem cell transplant. I had no difficulty with the 2007 transplant. After six months of recovery to rebuild the immune system, I returned to work full time, 50 to 80 hrs. per week for the next 13 years. I retired, December 2018. Over the 22 years of employment and all the treatments I logged 63,000 hours of work time. Then I was told the cancer had returned. After trying alternative therapies with no response, I proceeded with the Car t cell therapy February 2023. After the 6 months of recovery. I am now enjoying retirement. I still have blood work every 3 months and PET every 6 months. I have also kept my port. best wishes to all. There is a life after treatment.

Hi @crocket Indeed, there is a life after transplant! A few years ago I posted this discussion. You’d be a perfect candidate to add to the converation.

The post is: Snapshots of Hope: Life on the other side of transplant! https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

It would be fun if you’d like to share a photo or two that wouldn’t be possible had you not had your CAR-T Cell Therapy for Mantle Cell Lymphoma!

Your story of working those incredibly long hours while enduring treatments is so motivational. I’m glad you’re now able to enjoy retirement though! You’ve certainly earned it.
What do you think? Will you post a picture for us? ☺️