• Karen

Results of brain MRI

Updated: Jan 2, 2020

Snow on the Catalina mountains near our home. Photo by Karen.

David saw Dr. Oh, his PCP, yesterday. I didn't post this info then, because we didn't want to dampen anyone's New Year's Eve celebration and, frankly, I was rather depressed. We received a mixed bag of news. The good news is that the largest of the three original tumors, which had been about 1 inch in diameter (in the cerebellum, which controls balance and muscle coordination) has shrunk to about .4 inches, and the two smaller tumors are gone. The bad news is that there are three new small tumors: one that is about .2 inches in the inferior right cerebellum hemisphere, one that is about .12 inches in the lateral left frontal lobe (which controls executive functions and language-related movement), and another that is about .12 inches in the left parietal lobe (which controls language, mathematics, and sensory abilities).

We'll see Dr. Sipos (neurosurgeon) on 1/3 and Dr. Frye (radiology oncologist) on 1/7, so we assume they will be able to tell us whether radiation can be used on the new tumors, what the prognosis is, and what effects tumors in those areas might cause. We also plan to ask Dr. Brooks whether the Keytruda immunotherapy might be able to fight brain tumors. This web page, which discusses Jimmy Carter's cancer treatment, says "drugs such as Keytruda appear to help shrink brain tumors indirectly, by revving up immune cells that can cross into the brain." David has gotten only two Keytruda treatments so far, and Penny reminded me that one of the oncologists told us brain tumors won't show up on an MRI until they contain more than 1 million cancer cells. So these new tumors have probably been growing for months. This gives us hope that Keytruda might prevent new ones from growing or effectively fight any that are already growing that we can't see yet.

Another ray of hope is what David learned from a fellow cancer patient he met during a recent chemo treatment. "Fast Eddie" is a professional bicyclist who has been fighting lung cancer for about two years. He has had three batches of brain tumors that have all been eradicated with radiation. We hope David will fare so well. Needless to say, we will have many questions for Dr. Sipos and Dr. Fry regarding treatment of the new brain tumors and what can be done for the remaining original brain tumor. We'll keep you posted as we learn more.

Other news includes an explanation regarding the pimples and insomnia that David has been dealing with. Dr. Oh said they are due to the fact that David was on steroids to reduce inflammation in his brain before, during, and after his radiation treatments. She said it can take a long time for the steroids to quit affecting the body; unfortunately, David might have to go back on the steroids due to the new brain tumors.

David's iron levels, which had suddenly skyrocketed recently after he had taken iron pills for several months, are back down to reasonable levels since he stopped taking iron. Dr. Oh did a genetic test and determined that David is heterogenous for the H63D mutation, which means he has one copy of the H63D mutation and one normal gene. This can contribute to hemochromatosis—a condition that causes the body to store too much iron. Because David's restless leg syndrome has started to return (taking iron had abolished it), she said he could resume taking iron at a lower level, one pill every other day, and we'll continue to monitor his iron levels.

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