This is a list of most of the side effects I’ve had since I started talquetamab. The most surprising and disappointing problem I’ve encountered is the loss of my sense of taste.
Dry mouth. This is so bad that at times my teeth stick to the inside of my mouth. It’s not always that bad though.
My sense of taste is altered or absent. A dill pickle tasted like nothing to me. I could smell the dill, but the experience of eating the pickle was totally unsatisfying. It was like a crispy water snack. Vanilla ice cream tasted like salt. I had a hot dog with mustard on it, but couldn’t taste the mustard at all. The hot dog had a muted flavor. There are very few things that taste like much of anything. I still drink coffee every morning. I’ve made it excessively strong, to see if I can detect more flavor, but that hasn’t helped. The coffee smells great, but tastes like hot water with 2 teaspoons of sugar in it. Yum.
Swallowing problems. I have trouble swallowing most foods. I have to keep a full bottle or glass of water nearby to wash things down with. If I try to swallow without the help of water, I cough or choke a little. Most things get stuck in my throat. We believe this is a result of the dry mouth/effect of the drug on the salivary glands.
My nails are separating from the nail beds, which is painful. The skin on my fingers and hands is peeling.
I’ve been experiencing pins & needles on my head, neck and torso when it’s too warm. My face gets flushed. My internal temperature rises a bit. This happens if I’m outdoors and the outdoor temperature is in the upper 70s or higher. It also happens if I’m exerting myself in any way. Including doing such simple things as folding laundry. The only remedy I have is to rest immediately and try to reduce the temperature in my environment.
Treatment was withheld this week for this reason. This is still under investigation.
International Myeloma Foundation
The IMF has a good video describing some of the data from a phase I trial of talquetamab as a single agent: