Mantle Cell Lymphoma Treatment | The Patient Story

Mantle Cell Lymphoma (MCL) Treatment & Patient Stories

Mantle cell lymphoma or MCL is a rare subtype of non-Hodgkin lymphoma or non-Hodgkin’s. It has been classified as an aggressive-growing cancer, but can also present as indolent (slow-growing).

Also according to the National Cancer Institute, this acquired (not inherited) cancer type has a few notable risk factors, including but not limited to older age, males, white, and conditions that weaken the immune system.

Explore below for our in-depth mantle cell lymphoma patient stories, who share everything from first symptoms, treatment decisions, undergoing different therapies, and navigating life with mantle cell lymphoma.

Also hear from top medical experts, like Dr. David Miklos, a hematologist-oncologist at Stanford Medical Center, on mantle cell lymphoma and the latest on MCL treatments.



Mantle Cell Lymphoma General Info

Common First Symptoms

Some of the most common signs of mantle cell lymphoma (MCL) include, but aren’t limited to [1]:

  • Fever
  • Fatigue
  • Swollen lymph nodes
  • Night sweats
  • Weight loss

The swollen lymph nodes may be telling because there’s a physical sign to take notice of. Tim Holyoake wasn’t sure if it was a symptom of anything, but a small lump caught his attention.

“I thought it was probably nothing, it was just a cyst or something like that because I’d had a few on my back before. It felt the same, no pain or anything like that.”

After a needle biopsy and MRI scan, he was diagnosed with mantle cell lymphoma.

Some people experience no symptoms, like Shari Bernhard, who went to the doctor for a separate issue when a physician’s assistant felt enlarged lymph nodes.

The following table referenced by the National Institutes of Health and originally compiled by the Human Phenotype Ontology (HPO)  shows some symptoms described in medical reports. [2]

Human Phenotype Ontology (HPO) 

Mantle Cell Lymphoma (MCL) Patient Stories

From feeling their first symptoms to managing through treatments like chemotherapy to stem cell transplants, patients share their mantle cell lymphoma stories in great detail below.


Tim H., Mantle Cell Lymphoma (MCL), Stage 3/2



1st Symptoms: Lump on left-side of neck that grew bigger over a couple years, new lump on right side
Treatment: 6 cycles Nordic chemo protocol, alternating cycles of R-CHOP and rituximab + high-dose cytarabine, autologous stem cell transplant

Sheryl B., Mantle Cell Lymphoma (MCL), Stage 4



1st Symptoms: (Over 15 years) Skin irritation from temperature changes, rising WBC levels, unexplained fatigue, retinal hemorrhage, hardened abdomen (from enlarged spleen)
Treatment: 6 cycles Hyper-CVAD chemotherapy

Shari B., Mantle Cell Lymphoma (MCL), Stage 4



1st Symptoms: None, lymphoma discovered at unrelated doctor appointment
Treatment: 6 cycles R-CHOP, 5 cycles Phase 3 trial of Velcade + Rituxan (normally for multiple myeloma), allogeneic bone marrow transplant (BMT)

Bobby J., Mantle Cell Lymphoma (MCL), Stage 4



1st Symptoms: Fatigue, enlarged lymph nodes
Treatment: Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD

Jason W., Mantle Cell Lymphoma (MCL), Stage 4



1st Symptoms: Hives, inflamed arms



Treatment: Calabrutinib, Lenalidomide, Rituxan


Stephanie R., Mantle Cell Lymphoma (MCL), Stage 4



1st Symptoms: Elevated white blood cell count



Treatment: 6 months of rituximab + ibrutinib, 4 cycles of hyper-CVAD chemotherapy

Cherylinn N., Mantle Cell Lymphoma (MCL), Stage 4



1st Symptoms: No symptoms



Treatment: R-CHOP chemotherapy, rituximab

MCL Medical Experts

Dr. David Miklos on MCL & Treatments

Dr. Miklos of Stanford Medical Center talks about mantle cell lymphoma and the latest on MCL treatments.


Mantle Cell Lymphoma Treatments

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References
  1. Adult Non-Hodgkin Lymphoma Treatment–Patient Version (PDQ®). National Cancer Insitute. March 3, 2016; https://www.cancer.gov/types/lymphoma/patient/adult-nhl-treatment-pdq. Accessed 12/3/20.
  2. https://rarediseases.org/rare-diseases/mantle-cell-lymphoma/.