So answered Dr. Goldberg, upon Javi asking how long it can be that we don’t understand my health situation.

We learned a little more but not a lot. I am diagnosed in general having an MPN with hypereosinophilia. But the diagnosis does not define a type of MPN nor be more specific on the eosinophilia. My CBC today showed I was high in several blood count areas, including platelets for the second time, so it could be the MPN called ET. I also have some mild scarring in bone marrow which is an indication of the MPN called MF.

The toenail-related investigation (see prior post) showed I have another post-birth genetic mutation TP63, in addition to CALR.

It’s possible both mutations are in the same cells because they are close in the number of cells they are found in (re: MAF percentage), but they don’t totally know. That’s as far as I’ll take this topic for now, since me trying to explain complex biology is a stretch.

My blood oxygen was low during intake so I’m supposed to monitor it more frequently at home with a pulse oximeter. I had a Pulmonary Function Test (PFT) this afternoon after my main appointment. Random coincidence recalled: I had my first PFT scheduled for March 13, 2020, which was cancelled by the hospital due to the pandemic chaos of the time. Three years later, Dr. Goldberg will talk to pulmonologist Dr. VanDerEls about my results, once received.

Dr. Goldberg also ordered a BMB (bone marrow biopsy) to be done this week. He wanted to check for genetic fusions in the marrow if I was willing to undergo it again. This way he can be as clear as possible on what’s happening at the source before I start any treatment. If I have end-organ pulmonary impact from the eosinophilia, an option is Mepolizumab/Nucala. If I show any fusions in BMB, an option is Imanitib/Gleevec.

I may update with more details on this stuff later, but for now, these are the basic points of interest. BMB will be Thursday 3pm and I will see Dr. Goldberg again March 27. The waiting is the hardest part. RIP Tom Petty. But since it could last forever, I’d better get used to it.