End of Cycle 5 – Talquetamab and Daratumumab plus Pomalyst

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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