Anyone else have Mantle Cell Lymphoma?

Is it incurable indeed? I thought it was gone until I moved to Galveston close to MD Anderson's facilities. They seem to think mantle cell lymphoma is not curable. I have lived for 20 years after being diagnosed with MCL. My only consistent side effect is anemia from low red blood counts and occasionally from low platelets. My original hematologist retired and I have finally found another one here in the local area who wants to do a bone marrow biopsy. Not anxious to do that, but we will see

@wileywright oh my goodness I wouldn’t

I think you are right. I believe the young doc is just trying to cover all the bases.

@wileywright Yes. In my opinion they do that as it keeps them right I think! At the end of the day I make my own decision on everything.

I agree. Always know what they are injecting into you or treating you with.

Is anyone on this site being treated for mantle cell lymphoma? If so, what treatment are you receiving and what is your status? I would appreciate all thoughts and comments?

@balvare, I moved your question about mantle cell lymphoma and treatment experiences to this existing discussion:

~ Anyone else have Mantle Cell Lymphoma? https://connect.mayoclinic.org/discussion/mantle-cell-lymphoma/

I did this so you can easily connect with members like @steiner @wileywright @paulhite @chastenn and others.

Blavare, is this a recent diagnosis for you? What treatment has been recommended for you?

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.

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?

Thank you Colleen.
Hi Everyone,
I am a 72 year old mother of 2 daughter's. One in heaven and one here on earth with me. I am a grandmother of 4 grandkids in which I have guardianship of 2 of them since their mom passed from cancer almost 7 years ago. I was diagnosed with MCL in April 2025 and am currently under the care of Dr. Munoz at Mayo Clinic. The original node biopsy showed a K-67 rate of 10% and a subsequent bone marrow biopsy found 5% bone marrow involvement and no pathogenic alterations in the tp 53 gene.

I was originally on watch & wait until the enlargement and activity in my nasal pharynx area caused issues which prompted my treatment. I was getting a second opinion at MD Anderson in Texas in July when the doctor there felt I needed to start treatment ASAP so my watch & wait period ended up being 3 months The treatment plan was 2 rounds of radiation to the nasal pharynx area and a treatment combination of rituxamb, zanubrutinib and Venetoclax. I was admitted at MD Anderson and received the first infusion of rituxamb and 2 sessions of radiation.
Upon return to Phoenix I received my 2nd infusion of rituxamb. After that I had low grade fevers and body aches. Due to my reaction I was admitted for my 3rd infusion. Prior to the infusion I developed headaches, body rashes and couldn't lift my arms due to severe pain. After several tests it was determined that I had a serum sickness reaction to the Rituximab. My CRP level was 120. The decision was made to pause the Rituximab infusions and continue with taking the Calquence only. As of September I had received 2 infusions of rituxamb and about 3 months of Calquence. I had a PET scan in September that showed I was in metabolic remission. The PET scan was rated as a 3 only due to some residual activity in my throat.

I am currently on 100 mg Calquence 2 x daily. Although I am grateful to be in remission I am concerned about eliminating the Rituximab infusions entirely and don't know how that will effect my ability to obtain a longer remission. I hope to be around long enough to get my grandkids raised. I asked Dr. Munoz about the possibility of using obinutuzumab instead of rituxamb for maintenance but he feels it is best to not "rock the boat" while I am doing well and in remission. I have my next follow-up appointment in December with blood work & CT scans. I had hoped to get another PET scan to confirm remission but the doctor does not feel it necessary and said my insurance would likely not approve it. Thank you all for reading this long post. I am hoping to connect with other people who are on the same MCL journey and learn from other's experiences.