Tag: cytoxan release syndrome

End of Cycle 5 – Talquetamab and Daratumumab plus Pomalyst

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During cycle 5, the study team was given some freedom to adjust my dose of dexamethasone.  We could do anything, from eliminating it completely to decreasing it.  For 3 cycles, I was having 40 mg of dex a week.  Dex is rough.  If you have taken 40 mg of dex for any amount of time, you know what I mean.

I tried no dex at all, and I ended up having a fever because of CRS (cytokine release syndrome). The next week I took 10 mg of dex to tamp down my immune system just a little.  I still had fevers. So, this week I’m back at 40.  This sounds crazy, but I would rather have a fever than take dexamethasone.

My nails are improving, so that’s nice.  I now have one really good nail on my left index finger.  That’s the one I can use to open cans. I’ve taken my finger nails for granted my entire life.  The other nails are growing out from the bottom, so it’s only the very tops that tend to be splintery and need to be kept trimmed so they don’t catch on things.

My sense of taste has not improved.  Everything still tastes watered down.  There are still things I can’t taste at all. Yellow mustard is one of those things. Another thing I can’t taste is butter. If I have buttered toast, it tastes like toasted bread with Crisco on it. It’s not worth it.

I still have a sensitivity to heat. That hasn’t changed at all.  I’m glad summer is behind me, and I don’t have to be tethered to a fan and/or air conditioning. Doing chores around the house will still cause me to get too hot and get that uncomfortable feeling of electrical zaps to my head.

I have occasional itchy scalp.  This was the worst on the week when I had not taken any dexamethasone. It’s crazy-making!

After work last weekend, I stopped to take a look at a covered bridge that’s on the way home. This is the Pisgah covered bridge. I was curious about why covered bridges were built, so I looked it up. According to Wikipedia, they were built that way to improve durability. A covered bridge could last up to 100 years.

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TNB-383B Phase I Trial

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I recently enrolled in a clinical trial at Wake Forest Baptist Health.  A phase I trial to test TeneoBio’s TNB-383B. Before this, I spent several months on carfilzomib, dex, and cyclophosphamide.  Test results and bone marrow biopsy indicated I was relapsing.

TNB-383B is a BCMA x CD3 T-cell engaging bispecifc antibody being studied in relapsed or refractory multiple myeloma who have received at least 3 prior lines of therapy.

TNB-383B is being developed by TeneoOne through Phase 1. AbbVie holds the exclusive right to acquire TeneoOne and lead subsequent global development and commercialization of TNB-383B.

AbbVie, Inc. “TNB-383B.” AbbVie. Accessed November 24, 2020. https://www.abbvie.com/our-science/pipeline/tnb-383b.html.

I had one infusion of the drug almost two weeks ago. The first infusion required a hospital stay due to the potential for serious side effects, primarily cytokine release syndrome and tumor lysis syndrome. It sounds scarier than it was, in my case.
About two hours after the infusion of TNB-383B I began to experience an extreme skin sensitivity, aching joints — mostly knuckles and elbows, rigors, headache, and a fever of something over 103 degrees F.  I’m not sure what the ultimate high temperature was.  I had not known about rigors before this event.  I don’t think I was shivering as much as what I’ve heard others talk about.  I was extremely cold, and I think I was constantly begging for a blanket.  I don’t really remember everything!  I was aware at some point that they were talking about testing me for Covid-19, just to make sure that wasn’t the cause of the symptoms.  They were also giving me fluids and Tylenol.  I remember being wheeled to an isolation room, which was something they did as a precaution. In case I had Covid-19. My blood pressure also dropped about 30 points.  I had a rapid heart rate, too.  I heard a nurse talking about giving me morphine, which I declined.  I’m not sure why I did that.  Later I learned that morphine helps with rigors.
I could tell the efforts of the staff were beginning to be successful when I was no longer cold. Isn’t it weird that having a high fever would make me cold? Throughout the next few days, I was given fluids and Tylenol.
By the way, I was not positive for Covid-19.  And, the swab test is not as bad as the crybabies on TV have reported. :  )  I guess it’s all relative. If you’ve had bone marrow biopsies and bone fractures, no swab into the nasal cavity is going to bother you.
Next time, I’ll post some of the test results.
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