I've spent ten years on chemotherapy with only moderate side effects: mostly fatigue and peripheral neuropathy. But Talvey! Jesus Christ. My mouth is cotton, swallowing is difficult, my breathing is so shallow I can barely climb a flight of stairs, and my sense of taste is completely gone. This stuff is a killer.
It's difficult to express this convincingly, but it's striking how central my sense of taste is to my well-being. Losing it is repellent and depressing beyond anything I would have guessed.
Are my taste buds ever coming back? I hope so. But so far not even slightly.
POSTSCRIPT: OK, but is the Talvey at least working? There's no way to tell. We won't know for a few more months.
Ugh. For what it's worth, I'm sending some healing thoughts in your direction.
Oh man, that sounds so terrible. It's amazing the small but important things we take for granted. I'm sorry you have to go through all of this. I hope your tastebuds come back and that the treatment works as envisioned.
Yes a permanent loss of taste would incredibly bad. Sincere wishes it comes back for you!
Kevin, taste loss is the worst. You look at foods you used to love and you can't eat them, but you simply have to, to get the calories.
I had my 1st chemo 2 weeks ago and my taste is just starting to come back. I can eat bananas, thank god, but the only things that really taste good are Coke, ice cream, hostess apple pie's, etc.. I have a fridge full of M&M's. Those are like the last things on the food list you should be eating but I can't afford to lose weight, I had thrush earlier in the year and lost 20 pounds in a month.
I've been really dehydrated but not thirsty which makes no sense.
Kevin don't try to do this alone, there are lots of organizations that can offer support. I'm part of 2 on facebook, one related to my cancer, and the other one called "man up to cancer" which is obviously male oriented. There are guys who've gone through this and during tough times can offer support.
I wish you the best, it's the hardest fight we'll ever do, but "Keep Fucking Going".
i could probably tolerate the loss of most types of taste except salt, umami, and capsaicin
pretty bleak without those
I feel for ya Kevin. Look at food texture for a while to divert your attention from the tastelessness. Hang in there. We are pulling for you.
I've read about how ppl w/ COVID who lost their sense of taste lost their desire to eat. IDK about anyone else, but when I get nasal congestion from allergies (which is extremely frequent) or colds, I temporarily suffer from anosmia. It's not that the flavors are completely gone, though. I can still tell sour from salty from bland.
When I was in high school, I had a Sunday school teacher relate a story about a man who was so poor that he could only eat plain white rice, which was common among Japanese farmers prior to Showa. The smell of a nearby restaurant's cooking would conveniently accompany his meal and the man would use it to imagine he was eating a meal from the restaurant.
The point here is that the memory of any particular food can trigger an emotional response. Do it long enough and it becomes unconsciously habitual.
That is fascinating.
(This was meant to be a response to D_Ohrk_E1.)
Maybe eat some Ben & Jerry's. I read somewhere that one of them had no sense of taste and focused on making the texture interesting.
Foxtrot Uniform Charlie Kilo cancer.
I wish I knew a way to help you get taste back, but till I do, I'll just say--what a stupendous human who, while feeling a rotten assortment of lousy effects of chemo, manages to post that photo of the Danube.
My experience after chemotherapy and radiation was that taste came back slowly over the course of weeks, one specific flavor at a time.
And each thing you taste is a complex mix of flavors, so things taste different and wrong until all the various components are back together.
It can be quite complex and rather strange the way it works. I’d be very upset with my doctors if they didn’t discuss this with me before treatment. For some people, it can make life hardly worth living.
Hoping for the best, KD.
Ugh. Hang in there! We're with you!
At 4 am I woke up thinking, what is it that causes this side effect? What could mitigate it? "GPRC5D, the target of Talvey, is not only expressed in multiple myeloma cells but also in skin, hair follicles, and taste buds." Dysgeusia is usually temporary (hopeful!). Suggestions range from staying hydrated to zinc supplementation. A recent study on zinc and chemotherapy had positive results, though other studies are mixed. https://link.springer.com/article/10.1007/s10147-024-02544-w If zinc levels are low, that would indicate a need for supplements. I would take it in capsules to avoid a metallic taste. This is probably not useful, but middle of the night obsessions must be served.
This sounds horrible. I'm so sorry to hear this and I hope your sense of taste returns.