Len’s Story

Site created on December 15, 2022

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Newest Update

Journal entry by Norma Knapp

Hello everyone!  And Happy New Year!  May your 2024 be filled with many blessings.  

I've recently begun to do more research regarding treatments for Multiple Myeloma, the cancer my son Len has.  

For decades, the foundations of treatment have been stem cell transplants and chemotherapy. These continue to be the critical mainstays, but recently a new category of treatment has helped transform the treatments. The past decade has marked the emergence of new meds that find and kill cancer cells by homing in on specific molecular changes seen in those cancer cells. So dozens of targeted meds approved by the FDA are now standard treatment.

Immunotheray—meds that enlist and strengthen the power of a patient's immune system—has rapidly become the new cancer treatment of Multiple Myeloma.  In a small percentage of patients, these treatment responses can last for years.  This has been true for my brother Ron in Denver who was also diagnosed with Multiple Myeloma over 13 years ago!  So my family lives with lots of hope!  

Today a form of immunotherapy, called CAR T-cell therapy, is generating excitement among researchers and oncologists. Although CAR T-cell therapies are not as widely used as immune checkpoint inhibitors, they have shown the same ability to get rid of advanced leukemias and lymphomas and to keep these cancers at bay for many years.  

Since 2017, six CAR T-cell therapies (meds) have been approved by the FDA.  All are approved for the treatment of blood cancers, including lymphomas, some forms of leukemia, and now Multiple Myeloma!!  Alleluia!!!  

Despite the excitement around these therapies, they lead to long-term survival in fewer than half of the patients treated. They have also come under criticism for their cost, which are very expensive.  Uff!  We need to be so grateful for the American Cancer Society, grants & their writers, and Mayo Clinic --to name a few--that help with these ongoing expenses.  

CAR T-cell therapies cannot be tried until the patient has tried at least four different prior cancer treatments.

As most of you know, Multiple Myeloma is a type of cancer that occurs when abnormal white blood cells build up and form tumors in the bones and other locations. Although there are many treatments for Multiple Myeloma, they typically work for only a few months and can cause many side effects.

James Kochenderfer, M.D., a senior investigator in NCI’s Center for Cancer Research is very excited about these approvals from the FDA. This work builds on earlier work conducted by his group at NCI that showed CAR T cells could be an effective treatment for multiple myeloma. 

To make CAR T-cell therapies, a patient’s own T cells are collected, genetically engineered so they are better able to “see” and kill cancer cells, and then infused back into the patient.  With this, the genetic engineering lets the CAR T cells “see” BCMA, a protein that is present at high amounts in multiple myeloma cells. BCMA is found in a small subset of healthy white blood cells but not in other healthy cells.

Like other CAR T-cell therapies, this immunotherapy can have serious side effects, including overactive immune responses that can be life threatening. CAR T-cell therapy is also custom made for each patient, which takes a few weeks to a month. For that reason, these therapies are typically only available at the larger hospitals. 

Patients are usually very happy after they get the CAR T-cell therapy because, for the first time in a long time, they have more energy and more hope.

Speaking of energy and hope, we, most of Len's family, spent Christmas Day with Len, and he indeed looks and feels better.  He continues to have blood work and chemo meds almost every week.  And he exercises daily.  He is more active, less fatigued, and grateful for so much.  He continues to have that positive spirit.   

My thank yous are immense to each one of you for your continual prayers, support, encouragment, gifts, and notes to both Len and me. 

Warm hugs,

 Norma/Mom/Grandma Norma/Aunt Norma/Sis/Sis-in-Law/Mom-in-Law/Cousin Norma   

 

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