(Originally published April 25, 2022)
I started taking the Zanubrutinib (Brand Name: Brukinsa) last Monday evening. 2 80mg capsules in the morning, 2 at night.
One week in - I have no negative side effects, the spleen is down to the point where I can lie on my stomach in bed for the first time since November, I'm off the Oxycodone and the anti-nausea medication, and my hemoglobin and red blood cell counts are up without any transfusions.
The oncologist and I are cautiously optimistic that this trajectory will continue.
The last couple of treatment cycles also started with promise but deteriorated quickly at weeks 2 and 3 post-chemo. I am reserving full optimism until we get through a month of this treatment and things are still going well.
Still, I'm celebrating these wins now. No pain, shrinking stomach distension, fewer meds, and generally better blood numbers without sitting in the transfusion chair...I'll take it.
Our expectation is that, if this works, we are going to get 6-24 months with this treatment before the lymphoma adapts. Enough time to set up for CAR-T therapy, which is the treatment that will (hopefully) give me another 6-10 years.
My hope is that I manage to get 18-24 months out of the Zanubrutinib therapy.
There is exciting research concluding their clinical trials with promising results. One therapy is a newer type of CAR-T therapy that appears to reduce the therapy failure rate, which is currently hovering around 20%. Another line of research is around drugs that target multiple gene expressions found in specific cancers (bispecifics). The medication I am on (and medications like them) typically only target one.
The research results for these clinical trials have been presented recently and the therapies look to be on track for inclusion in the Standard of Care around that time.
This particular video from the Patient Story is discussed within the context of Myeloma treatment, but much of this research also applies to Mantle Cell - https://youtu.be/THnkrlt3uWE
Cancer Care, an organization specializing in Counseling, Case Management, and Education, holds monthly treatment update webinars with oncologists from the large cancer research centers. The most recent update (March 31, 2022) is worth a listen - Mantle Cell Lymphoma: Treatment Update (cancercare.org)
A number of people have asked me about what CAR-T Therapy is and how it differs from Stem Cell Transplant. I frankly wasn't sure. Here's what I learned...
Stem Cell Transplant (standard of care for Mantle Cell Lymphoma prefers self-stem cell transplantation) takes the patient's own healthy stem cells from their bone marrow, replicates them, and puts them back into the patient.
Stem cell transplants require high-dose chemotherapy prior to the transplant, include complex harvesting processes (find an interventional radiology group that is willing to sedate you for the bone marrow removal), and totally wipes out your immune system, requiring a year or more for it to fully recover.
The chemotherapy I was on was an attempt to prepare me for Stem Cell transplant. More information: Stem Cell Transplants in Cancer Treatment - National Cancer Institute
CAR-T prepares the patient with low-dose chemotherapy over 3 days, then takes the patient's blood, remanufactures it, and pumps it back into the body. The remanufacturing process takes about a month. The patient then returns for the infusion.
Both types of treatment may require extended hospital stays for monitoring and side effect management. The lucky ones who take well to the treatment and live close to the treatment center might be able to do most of the experience as an outpatient.
CAR-T moved from clinical trials to Standard of Care and accepted by the insurance companies for payment less than a year ago, so there is little information regarding the patient experience.
One of the CAR-T manufacturers put together a decent patient-facing reference on the process.: Receiving ABECMA | ABECMA® (idecabtagene vicleucel)
In 2019, Johns Hopkins Childrens Center put together a 10-minute summary of the CAR-T therapy process and patient experience. As more individuals receive this treatment and more centers come online, I anticipate more discussions of the patient experience. CAR T-Cell Therapy | FAQ with Dr. Patrick Brown - YouTube