Why does this happen with talquetamab?
A short time after my first few doses of talquetamab, I noticed that the skin on my fingers was peeling and the nails appeared to be separating from the beds of the nails. It’s been a drawn-out process, and not every nail has been affected in the same way.
The way it’s been explained to me, there is a protein known as GPRC5D that exists on myeloma cells. Talquetamab is designed to activate the T cells to seek out and destroy cells/tissue that express GPRC5D. The thing is, there’s other tissue in the body that expresses GPRC5D, too. Everything from pancreatitis to difficulty swallowing has been the result of the drug’s action against GPRC5D.
This is an example of how talquetamab affected my nails.
The Human Protein Atlas has a protein expression overview chart here. The chart shows us which organs are likely to be affected by a drug that seeks to destroy GPRC5D. Not everyone treated with talquetamab is affected in this way.
I watched an IMF video (link below) and realized nail problems aren’t unusual. My consent forms also mentioned this, but I have to confess I didn’t read them carefully until after I’d already had several injections.
I saw all the side effects in the document, and the study coordinator also mentioned them to me. The important thing he didn’t try to do was explain how devastating it is to lose your sense of taste. Human beings have a lot of different senses, and it turns out there really aren’t too many of them that you can give up without feeling a great loss. Knowing I cannot enjoy food, there’s really no point in thinking about it or desiring it because none of it has any flavor. Without the ability to taste food, it’s like we can look in the window and see what the people in the restaurant are eating, but we’re not allowed to go inside. I’ve also lost my appetite. So far after 2 1/2 weeks on this drug I’ve lost 7 pounds. That in itself is not a bad thing, but I will need to force feed myself enough calories to stop the weight loss once I get down to my goal weight.
If this awful drug is approved so it’s use can be expanded, I will be very disappointed in the FDA.