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.
Xerostomia
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.
Dysgeusia
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.
Dysphagia
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.
Nail/skin changes
My nails are separating from the nail beds, which is painful. The skin on my fingers and hands is peeling.
Heat sensitivity
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.
Acute pancreatitis
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:
I just finished my step up dose five days ago for Talquetamab. I am experiencing altered taste, hyper mouth and throat dryness, low platelets, pins and needles when am exposed to heat. The altered taste made even water taste awful. Water tastes better now after five days. I hate my taste and its hard to swallow anything hard. These are the foods that I am surviving on and taste decent. Chocolate Weight Gainer (Optimum Nutrition). Any mint specially RICOLA cough drops, fruit pop-cycles. I am actually surviving on weight gainers though. Today am going to pick up “Meal Replacements” which is almost like a weight gainer but made with more wholesome ingredients. Hope this helps and that we can tolerate until we get an alternative treatment. God Bless all.
I stayed on that treatment for a year. It was pretty uncomfortable for me. Hang in there though. Stay on it until it stops working.
My dad just began talquetamab last week and was discharged from the hospital yesterday. Today, he says everything tastes awful. We were not told of this potential side effect, so I searched and came upon your post. Do you still have a loss of taste?
Hi –
I still have a loss of taste. I found that as a side effect in the paperwork I signed for the trial. I’m afraid I didn’t read it very well! I have some other side effects that I’ll write about this week.
B
I am on my 11th year and by mistake I started the Talquetamab trial in November before I left the hospital I had already lost my taste. I dropped out after a month after losing 20 pounds. I still don’t have my taste back and still have dry mouth. My nails have fallen off within the last month. My itching and rashes have subsided after a whole layer of top skin fell off. My M spike did drop but at what quality of life do you have to give up. I am now on solenexor that only makes you sick which is manageable.
Joe,
About Selinexor, one of my doctors said that your doctor can get a dose reduction. He said it doesn’t have to make people sick like that. He told me that back when it was one of the treatments I could consider. I mentioned that the last thing I want is to feel sick all the time. Is Selinexor working for you? How long have you been on it?
I know what you mean about quality of life. I have to work to keep my insurance and stay alive, but I rarely feel good enough to do much. If I didn’t work in a family business, I’d have been fired by now.
B
I’ve experienced ALL the side effects that Beth has reported. I had some really severe skin & nail problems. I can share photos if you’re interested (not sure if I can post pix to this blog, though…) I’ve been getting treatment at Vanderbilt University Medical Center in Nashville.
Cheers,
Tom
Tom,
I’ll send you email.
B
Hi Beth,
I’m just starting full dosing this week a d already have the dry mouth and loss of taste. Thanks for sharing because my care team knew nothing about these side effects.
Did your side effects lessen after time? (Taste return?)
Good luck!
Hi Matt,
There hasn’t been any improvement in taste, but I expect that to change with an upcoming change in my treatment frequency. : )
B
Thank you for posting this. My husband is currently in this trail. He is experiencing peeling skin on the hand, dry mouth, and loss of taste. Can I ask how long these symptoms lasted for you?
Thank you
Christi, my skin and nails have improved, but I still have the loss of taste and dry mouth.
Hi Beth,
I am embarking on this trial at the end of the month. I will be in the hospital for 9 days while the doctor steps up the dosage in measured increments before the target dose is reached. It was very helpful reading your blog, how are you doing now?
Walter
Hi Walter, I am doing pretty well. I really need to write an update!
Thank you for sharing this information. My mother has been in a talquetamab trial about 2 months now and has also experienced loss of taste and also loss of smell, dry mouth, swallowing difficulty, peeling skin and swollen feet and lower legs. However it has so farbeen very effective in reducing her M-protein levels.
That sounds a lot like my experience!
Thanks, I have been asked to participate in this trial and have never heard of this drug. Your insights are very helpful.
Hi Bill,
Have you decided whether or not to participate in this trial?
Beth
Just about to go in on Tuesday (4-26-2022) for ten days. My previous trial ran its course so now talq is at the top of the list of options. I’m not excited, and actually have some dread of the hospital, but there aren’t too many treatments which I haven’t already used up.
Hello Bill,
I understand your dread. I did not want to go into the hospital either. I ended up being there for 11 days. That was because they withheld one of the initial treatments for a day to help me recover from some side effects I experienced.
I am at the end of cycle 12 now. There have been a few times I wanted to quit.
I hope you will let me know how it goes.
Beth
I went in, did my time, and got started on the Talq. Today I had my second dose. No CRS, but I wish I had known how hellish it is to lose the ability to taste food. I would never have consented to taking this nightmare drug.
I’ve been at it almost a year. I can taste some things. Others not at all. Some things taste bitter. It’s been working for me, though, so I’ve stuck with it. The PA told me that some patients are taking alpha lipoic acid — 500mg 2x a day and they feel as though they have improved taste.