Starting Treatment for Mantle Cell Lymphoma After Six Months on Watch-and-Wait

Watch-and-Wait for Mantle Cell Lymphoma

Mantle Cell Lymphoma is a rare blood cancer that is not currently considered curable and is often aggressive. Fortunately, some cases, like Jay's, progress much more slowly. When the oncologist informed us that Jay’s MCL was indolent—slow growing—we felt as though we’d won the lottery.

The doctor placed Jay on watch-and-wait, with exams and bloodwork every three months and a repeat colonoscopy in six months.

My Plan

In my head, I outlined a plan for Jay’s health journey. We would do our part: pray, replace processed food with fruits and veggies rich in sulforaphanes, carotenoids, and polyphenols, and keep up his physical fitness. Future scans would indicate less metabolic activity or, worst case, a minimal increase. His blood tests would remain in the normal range and no new MCL polyps would be found in future colonoscopies, except maybe a couple occasionally. In my mind, this plan kept his disease indolent for fifteen to twenty years. By that time, kinder, more effective treatments would be developed that would possibly even cure MCL. This was an outstanding plan.

At his three-month exam, the PET scan showed the cancer remaining stable and his blood tests still solidly normal. Things were unfolding exactly according to my plan.

What Happened to My Plan?

After six months, Jay’s repeat colonoscopy found eight polyps testing positive for MCL. His endoscopy found two more in his upper GI. The disease was on the move, not aggressively, more like an eighteen-wheeler headed up a steep grade on I-5 in Oregon.

This turn of events deviated from my carefully conceived plan.

Starting Treatment for Mantle Cell Lymphoma

His oncologist told us he thought it time to treat and took the case to OHSU’s tumor board, made up of five lymphoma specialists. They unanimously agreed it was time to begin treatment. The announcement was like going to lottery headquarters and finding out a new law had just gone into effect to tax lottery winnings at 95%.

The board did not agree on the treatment protocol, mostly because indolent MCL with a TP53 marker is unusual. None of the members felt strongly about their recommendation.

Treatment Options for Indolent Mantle Cell Lymphoma With TP53 Mutation

Every case of MCL is different. I'm sharing our experience, not offering medical advice. Treatment decisions should always be made with your oncology team.

One oncologist suggested that Jay participate in a clinical trial at OHSU with a Bispecific Antibody (an immune therapy that helps the immune system recognize cancer cells) plus a BTK inhibitor (a targeted drug that blocks signals the lymphoma needs to grow). The drugs used in the trial had fairly low side effect risks and had shown success as a second-line treatment, but had no data regarding how well the combination of these drugs were in eliminating the disease in a first-line setting.

Two doctors believed the BOVen protocol—the gold standard for patients with the TP53 mutation—a twenty-four-month regimen using three drugs: a monoclonal antibody (lab-made proteins designed to function as substitute antibodies) infusion, a BTK inhibitor pill, and a BCL-2 inhibitor (blocks the BCL-2 protein that normally helps cancer survive) pill.

Along with Jay’s oncologist, one other proposed a six-month protocol using a monoclonal antibody infusion, the same BTK inhibitor pill as the BOVen treatment, plus chemotherapy infusion. The monoclonal antibody and chemotherapy proposed in this plan have less severe side effects than the antibody and BCL-2 inhibitor in the BOVen regimen. The downside is they are also less aggressive against the disease.

Since Jay’s disease appeared to be slower growing and his percentage of TP53 presence was low, his oncologist believed the less aggressive treatment would put him in remission with less risk of injury to his healthy organs.

So not only did my plan blow right out the window of that big rig struggling up the steep incline, but now we had to decide on a treatment protocol when the professionals couldn’t reach a consensus.

Prayer and Internet Search on Steroids

I entered full prayer and internet research mode. I researched each of the proposed drugs’ strengths and side effects, compared each to the others, searched for reports describing patients with case profiles similar to Jay’s. I did not find a similar case history. I also checked the suggested drugs against our Medicare health and drug plans.

The insurance company doesn't care that the FDA approved BOVen for first-line treatment in TP53-mutated MCL. Under Jay's Medicare drug plan, Venetoclax (the BCL-2 inhibitor in BOVen) is a Tier V drug. The insurer generally requires patients to fail another treatment first unless the oncologist can demonstrate why that isn't appropriate.

The antibody and the chemo in the plan that Jay’s doctor suggested had lower risks for severe side effects, but also were less aggressive at eliminating the cancer than the BOVen regimen.

The mean average TP53 variant allele frequency percentage of participants in the BOVen trial was 49.8%. Jay’s is 7%. With Jay's relatively low TP53 VAF, the BOVen protocol felt like performing open-heart surgery when a minimally invasive procedure might accomplish the same goal with far less trauma to the body.

Will Pivot if Not Responding

The lymphoma team will monitor Jay’s response to the treatment his oncologist suggested with blood tests, scans, and scopes. If the treatment doesn’t eliminate the MCL, or if after remission, he relapses, he can pivot to BOVen. Researchers continue testing promising new drugs, so if Jay remains in remission for several years, there may be even better options available if he ever needs additional treatment. Plus, I balked at the idea of pumping the harsher BOVen drugs into his body for twenty-four months if we weren’t sure it was necessary.

Hey, God, I’m Disappointed

After receiving Jay’s repeat colonoscopy results, I had a heart-to-heart with God, expressing my disappointment in His nixing my plan. He’s a good Father. He listened patiently to my little tantrum and then I sensed Him saying, “I hear you, but My way is better than yours. Trust Me. I’ve got you.”

I know God has us, and He’ll give us the strength to get through this. I just need a little time to mourn the loss of my plan and embrace His—even though He hasn’t shared the outline with me.

We appreciate every prayer as Jay begins treatment, and we're trusting God one step at a time.

Blessings,

Angela

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Angela L. Gold is an encourager who shares the love of Christ in her writing. She is the author of The Lion Within and Kill Shot.