Mixed Messaging

The results from my first follow-up PET scan were less than stellar. The written analysis of the scan is always available first; the scan comes a day or so later. After reading the report, I wasn't terribly interested in seeing the scan. I guess in my mind I had already determined it wasn't very positive.

Has this million-dollar therapy been a waste of time and resources? I began to wonder. I was expecting to see an immediate improvement, and instead, most of the SUV (standardized uptake value) numbers that matched specific lesions or tumors on my bones were slightly higher than in the PET scan taken prior to the treatment, meaning more of the radioactive tracer substance was absorbed  — the more cancer, the higher the uptake values.

Most troubling of all was evidence of a new tumor on my right clavicle or collarbone. Oddly enough, the closest joint, the sternoclavicular joint where the right and left clavicles join to the sternum, had become swollen and a little tender on the right side a few times in the past year, just as it is now. I will undergo radiation on that spot beginning next week.

Another concern is the pain that has returned to my lower back. When I mentioned this to APRN Michelly during a phone call last week, she expressed concern as well and suggested an MRI would be warranted to see what was going on. When I talked to Dr. Rountree about it, he agreed and ordered an MRI, which is scheduled for November 12.

APRN Michelly, APRN Gloria, and Dr. Pasvolsky all encouraged me to continue to be patient as the modified T-cells expand, seek out, and destroy the myeloma. My observation period continues for several months even though I’m at home now. I am scheduled to return to Houston on day zero+90 for another PET scan and follow-up visit in December.

As for the bone marrow biopsy, the results were positive. "Not detected" was the common thread throughout the written report, and those two words are very favorable indeed — I'll hang my hat on them for now.

In the interim, I will have labs drawn every two weeks, which Dr. Joudeh and APRN Sherry will monitor. If additional treatment is necessary, they will make sure I get it. On my first visit with Dr. Joudeh last Tuesday since returning to Florida, my white count was concerning enough to warrant a telephone call from the good doctor and the ordering of filgrastim shots three days in a row last week and three days this week as well. Subsequent labs should show us how effective the shots are. Since I've already been sick twice in the last two weeks, I'll be relieved to learn my counts will have improved.

As I have said in previous blog posts, patience is not one of my strongest virtues. I must remind myself that each treatment may be quite different from the one before. This one certainly has been. When I had my stem cell transplant in 2021, I spent 17 days in the hospital, unlike CAR T, which was an outpatient therapy except for the two days I spent in the hospital on days zero+6-7. Nevertheless, being away from home for more than a month took a huge toll on both John and me. We've barely been home for a full week, and there are so many tasks I need to take care of around here. John has been doing double-duty taking care of his own house and mine as well. I have the motivation but not the energy to tackle them myself — a very frustrating combination.

It has been a period of mixed messages: some positive; others concerning. All I can do is what I've been striving to do since this journey began — trust completely in God and live...