Category: BiTE

I’m out of the TNB-383B trial

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.

 

“Varying Intervals”

I had my second infusion of TNB-383B yesterday.  There were no immediate side effects of the infusion. It was explained to me that some people have a recurrence of cytokine release syndrome (CRS), which could be as bad as the CRS accompanying the first infusion, or less severe. I had none, thank goodness.  While mine was only a grade 1 CRS, it may as well have been a grade 1,000,000 to me!  My sympathy goes out to everyone who has ever suffered CRS at any level.

The one thing that surprised me is that I’ve had nausea and vomiting from time to time over the last three weeks. The nausea ranges from mild queasiness to the “get me a bucket” kind. That reference will make sense to Monty Python fans. I spoke to a Cancer Center pharmacist, who told me to stagger my anti-nausea meds for a few days to stay covered. Maybe I can let up after that, and just take them when I first notice I’m starting to feel bad.  I have Zofran and Compazine. I think Compazine is working better for me.

I reported this unwanted side effect to the research staff. I asked if others are experiencing nausea and vomiting, and one RN said some are, “at varying intervals.”  What I’m hoping is that it will subside after I get adjusted to the drug.  Maybe soon?  I sure hope so!  I also hope this won’t affect you.