April 2019 – Medical Update

I went to see the Mast Cell specialist in Boston on March 19th. There, the doctor confirmed my carcinoid syndrome diagnosis. She was better able to explain it to me than the doctor at Rocky Mountain Cancer Center. I was informed that Carcinoid reactions and Mast Cell reactions occur on two very different biological pathways. Therefore, the octreotide shots that I take daily would not reduce a mast cell reaction. The medicine could only help bring down reactions if they came from carcinoid cells. She explained that I have the Carcinoid cells, they are just not together in a tumor. She also asked for more testing on the Mast Cell side of things since many of my reactions do not fit completely into a typical Carcinoid Syndrome diagnosis and fit more into a Mast Cell type reaction. My doctor still feels that I am having a combination of both of these diseases. We did some blood work while I was there and I recently completed a 24-hour urine collection test. I am still awaiting the results from these tests, which will determine what our next steps will be with the mast cell specialist. She also suggested I see two other specialists in Boston for dysautonomia and small fiber neuropathy, in order to fully rule them out. I am not sure at this time if I will choose to take that path or address it further on down the road.

Overall, April has been rough on me medically. I am still trying to adjust to the hormone replacement therapy. My endocrinologist in Omaha increased my dosage after my blood draws came back hypo in early April. My reactivity to my hormone replacement medication is making life difficult. However, I have to stay on this drug in order to live. We are waiting and watching how my body reacts to it for one more month in order to decide how to handle this moving forward.

A side-by-side comparison of me non-reactive versus reactive.

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