Some Bad News

Hello Friends,

I have bad news to share. Early this year, the blood cancer I have had since 2018, which had been under control, returned. The cancer (called multiple myeloma) causes the bone marrow to over-produce cancerous plasma cells, which cause bone pain and damage, kidney damage, fatigue, frequent infections, and eventually death. Treatments can keep it at bay for extended periods of time, but the cancer eventually mutates. Later “lines” of immunotherapy-type treatments are less effective and have worse side effects.

Within the past 5 years, a new type of treatment has been developed, called “CAR-T.” This treatment extracts T-cells (which are a critical part of our immune system) and sends them to a laboratory, where they are genetically modified to kill myeloma cells. The modified CAR-T cells are then re-infused into the patient. CAR-T treatments do a good job treating myeloma, but can have serious long-term neurological side effects.

After speaking with my regular hematologist at Kaiser Permanente and a specialist at the Stanford Cancer Center, I’ve decided to participate in a clinical trial being undertaken at Stanford to test a new “in-vivo” CAR-T treatment. Instead of removing T-cells and sending them to a lab for modification, the new treatment infuses the patient with a modified virus that attaches to T-cells and injects an m-RNA strand that modifies the T-cells to kill myeloma cells. Early data on humans show this new treatment to be highly effective against myeloma with fewer and less severe side effects. It also avoids the 4 – 8 week manufacturing delay (important to me since the cancer has been building up since January) and the need for pre-infusion chemotherapy.

The trial is a “Phase 1” trial, meaning that this will be the first large-scale test of the new treatment on humans. While this makes it somewhat more risky, after speaking with my doctors and doing my due diligence, I’m convinced that the risks are acceptable when compared with the benefits. (More curious types can click the link below for a more technical summary of the new treatment.) This type of treatment – infusing viral vectors to modify cells so they fight cancer – is being used and tested on a large number of different types of cancers. I feel good about giving back to a medical research system that has kept me alive since 2018.

I’ll start the treatment on May 6. I have to spend 9 – 12 days in the hospital (in case serious side effects arise) and then another 2.5 weeks close to the Stanford medical facilities. As a test subject I’ll also have to go back from time to time for tests to check the long-term effects of the product. But if all goes well, in a month or so the cancer should be knocked down for another 2 – 3 years (or longer if I’m lucky).

Wish me luck, everyone. I’ll keep you updated as things progress.

Categories: SSS Health

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