Things have taken an unexpected turn. While my blood tests looked pretty good, my PET scan results were disappointing. The PET scan showed that I’m not okay, and I am no longer eligible for the trial because of disease progression.
Here’s what the report said:
MUSCULOSKELETAL: Multiple hypermetabolic osseous lesions in the appendicular skeleton, including the right proximal humerus, left distal humerus, and bilateral femurs. Index right proximal humerus lesion SUV max 2.11 (image 114).
Multiple hypermetabolic osseous lesions in the axial skeleton, most significant in the right eccentric L1 vertebral body, SUV max 8.37 (image 184). Index proximal left sacral lesion SUV max 6.40 (image 243). Index distal left sacral lesion SUV max 4.89 (image 255). Index lesion in the left iliac bone adjacent to the SI joints, SUV max 2.42 compared to 1.9 previously (image 232).
On Tuesday, I had another bone marrow biopsy. On Wednesday, I saw the PET scan with my own eyes. It was a bit horrifying to me. I have never, in my 18 years with myeloma, had bone issues. Suddenly, there it is. “Worsened diffuse metastatic disease in the axial and appendicular skeleton in the setting of multiple myeloma as detailed above.”
I have a few FDA approved drugs I can try, and I have some more trials I could try. There’s one drug called selinexor that I’m passing on. My doctor says it takes a lot of meds to control the nausea associated with it. I would simply do almost anything to avoid nausea. The other FDA drug I haven’t tried yet is something called BLENREP. Here’s what caught my attention immediately: “BLENREP can cause changes to the surface of your eye that can lead to dry eyes, blurred vision, worsening vision, severe vision loss, and corneal ulcer. Tell your healthcare provider if you have any vision changes or eye problems during treatment with BLENREP.”
I am considering enrolling in another trial. I’ll get more details on that soon.
I was kicked out of the TNB-383B trial after one cycle because I developed a plasmocytoma. That after the trial coordinator told a story about how a patient had a plasmocytoma going into the trial which miraculously went away on TNB-383B. I need to tell him my new one is still hanging in there months after the TNB-383B stopped.