I’m on Kisqali and exemestane and can’t taste most food. Everything else either tastes like chemicals or something equally awful. The bottom line, I’m not eating. Once I get the wrong reaction, I start to be repulsed by the idea of anything going into my mouth.
Any suggestions?
Some people get a prescription from their doctor for cannabis oil etc which can help you to feel hungry enough to eat most foods! 🌸
I get medical marijuana for sleeping. I take it daily, so far it doesn’t seem to affect this. Thanks.
I’m on verzenio and letrizole and I am having the ‘no taste and/or the it taste awful’ experience, too. I just deal with it by telling myself I need the nutrients even if there is no taste or a funny taste. I have noticed a slight decrease in weight because I am not very hungry most of the time but since I’ve always had trouble losing weight, and I’m not losing a huge amount of weight, my onc isn’t worried about the weight loss. Foods I used to love turn my stomach now. Also I could probably go out and order off the child plate since I don’t eat very much at one time. My eyes are bigger than my stomach apparently and also since I was used to having a huge appetite, I have to remind my brain that I shouldn’t order so much food since I eat about three bites and I’m done. Sorry I don’t have any comforting words for you except to say, I’m pretty sure we are not alone in this experience. Maybe someone who has been dealing with this issue longer than we have will have some comforting words of wisdom.
CatLady (I'm a cat lady, too) how long did it take for you to lose your taste on verzenio/letrozole? I just started this regimen about 6 weeks ago, and so far, so good as to side effects. Sure hope I don't lose my taste again; it's so boring!
I’m going on one year with this treatment and the no taste began about two months ago so about 10 months in. The side effects I have the worst are stomach issues which bother me more than the no taste. I’m either suffering with diarrhea or constipation and it’s not predictable at all. So far, I have not been able to get a handle on the problem. If I take imodium before leaving the house, I get constipated. I’m too scared to leave the house without the meds because then I may have violent diarrhea. So I’m damned if I do, damned if I don’t. Otherwise, verzenio/letrizole is working for me. My tumor marker tests are dropping numbers and my scans are stable.
I don't know if this will work with verzenio, but when I was on Ibrance, I got a world of stomach problems. It could literally be diarrhea one minute, and constipation the next. Or gas (I guess) with terrible intestinal/back pains. I never had any GI issues before. Somewhere I read to take a magnesium supplement. Worked like a bleeping dream. Everything went away like 95%. I'm still taking magnesium and so far have no GI issues - of course, it's only been about 6 weeks on verzenio. I think I took 250mg tabs. Make sure to take it with food, unless it's magnesium citrate.
Thank you so much. It’s some comfort knowing I’m not unique! I can’t tell you how bad some things taste. I’ve lost 17 lbs since early December when this started. My current strategy is to hold my nose and chug some protein drink. Then I get the the chill down my spine and fight the gagging til my body settles down. Then it’s hours before I can do it again. I can’t keep this up much longer.
oh wow! That sounds horrible! I don’t like this particular side effect but I’m not experiencing it as badly as you are apparently. 17 pounds is a lot to lose especially if you don’t have much to lose to begin with. A 17 pound weight loss on me and my doc would surely find a solution for it since that would put me in an unhealthy weight class. Please ask your onc for a solution before you lose too much weight. Good luck!
thank you. I am messaging my team almost daily, but won’t get a response til Monday. I can afford to lose up to 20, but no more and not so fast. They say if you’re hungry enough you’ll eat anything. But I feel zero hunger. I’m really afraid I’m not going to get through this bout.
When I was on Ibrance, I totally lost my sense of taste. Could taste nothing. I started taking zinc, maybe 25mg a day, and it helped a little. Could taste savory foods somewhat, but nothing with any sweetness to it, obviously like candy, but tomatoes, milk, fruit, anything with sugar it in. Its cheap and certainly worth a try.
I’m on zinc. It’s not helping. But thanks.
I also lost my taste on exemestane. Everything tasted like cardboard. For other reasons, I wasn’t on it lone
I've attributed my loss of taste to aging, but maybe exemestane or other meds contributed to it. I had a very serious intestinal blockage, from cancer cells in my abdomen, and was hospitalized for 23 days this past Oct and my digestion has been a huge problem since. Had part of my intestine removed and can only eat small amounts of food since and have lost about ten pounds a month. My doctors have told me to pay attention to nutrition. Boost and Ensure are the nutritional drinks that have been recommended to me. Hydration is important, too. Isn't it sad that we have to learn stuff like this! I'm still having big problems with the skin on my hands, just two rounds in to Xeloda, first real chemo I've been on, and currently have been off for two weeks. Onc waiting for my next appt to decide about lowered dose, week on-week off schedule or changing meds. I'm ok with that., Scans and blood work show stability.
I’m so sorry you have all this to deal with. This my third go with actual chemo. So far, it’s the worst to deal with. I’m trying to get in ‘enough’. I hope to talk to someone Monday about other strategies. But they haven’t experienced this, so it’s hard for them to comprehend what it’s like.
Thanks for responding. Good luck!
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