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Christy Brown: Send your positive thoughts to Alexander and us

Photo taken from Christy Brown/LinkedIn

Feb 27, 2024, 18:57

Christy Brown: Send your positive thoughts to Alexander and us

Christy Brown, Senior District Sales Manager at Medtronic, shared a post on LinkedIn:

“Alexander update:

Yesterday we had an appointment in St. Louis to enroll Alexander in a clinical trial for a maintenance therapy. The therapy does not cure cancer; Alexander has received all the curative options available. This trial’s goal is to see whether a drug can prevent cancer from recurring. Recurrence is our worst nightmare: there is no hope of long-term survivorship if medulloblastoma recurs.

The drug involved is called DFMO. It’s a well-established drug that was recently approved for neuroblastoma maintenance therapy–that is, it has been shown to increase the chances that neuroblastoma patients remain cancer-free after curative treatments are completed. There is reason to think that, because neuroblastoma and medulloblastoma are biological cousins (maybe step-siblings, the doctor in St. Louis said), DFMO might operate similarly on medulloblastoma.

But, to continue the metaphor, if neuroblastoma and medulloblastoma are related, they live in different cities. Neuroblastoma is not a central nervous system cancer, so it can be treated without regard to the blood-brain barrier. Medulloblastoma, on the other hand, must be treated with drugs that DO cross the blood-brain barrier. For that reason, a higher dose of DFMO is necessary to treat medulloblastoma patients–only a higher concentration of drug in the bloodstream will result in a therapeutic concentration of drug in the cerebrospinal fluid.

For Alexander (and us), that means a lot of pills. He will need to take 14 pills a day, every day, in addition to the ones he already takes, for two years. There are possible side effects, including hearing loss, nausea, and depressed blood counts (though we don’t expect it to affect his neutrophil counts like chemo did), and we don’t love any of that. But Alexander has been so tough, so robust, and so resilient. We have every reason to think he can handle this just like he handled brain surgery, radiation, and chemotherapy.

All of the above is conditioned on a scan a week from Monday that shows no progression of disease. He is only eligible for the trial if the cancer has not progressed. We are feeling the now-familiar stress of the upcoming scan. Send your positive thoughts to Alexander and us.”

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