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Food aversion with immunotherapy
Hello! I am seeking help for my husband. A year ago, he had a malignant melanoma tumor removed from his right foot. He did 8 treatments of Keytruda but then had a saddle PE in August and we stopped the treatments. However, 2-3 weeks before the embolism, he started having an aversion to food, especially meat. He said all meat smells rotten and he would get a slick metallic taste in his mouth. He vomits anything that strikes him as off. This began in July and he has now lost over 60 lbs. I read a post on here from 2017 where a woman described her husband's food aversion and it matched what we are seeing.
My questions: Has anyone else dealt with this AND how was it resolved? Our primary doctor has prescribed Dronabinal (synthetic weed) to try to stimulate his appetite and suppress his vomiting. We have only just started it although he did say yesterday that he felt the first twinge of hunger he has had in months.
Sweets taste fine to him. He currently lives on Ensure, anything sweet or with cinnamon, Cream of Wheat (which I sweeten and put vanilla in) and fruit. He used to eat carrots but recently turned off of them and other vegetables.
Thank you!
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Hi @mcmayer, welcome. I'm tagging @gaybinator @ta52 @memawjax @nodunk @birdsforever @leigh17 @gmacookie @edinral, who have experience with immunotherapy, specifically pembrolizumab (Keytruda) for melanoma or other cancer. I'm confident that they will share their experiences with you.
Thank goodness that Ensure is tolerable. Like you, I'm hopeful that Dronabinal is stimulating his appetite. His food aversion sounds so challenging and must have you worried. If I understand correctly, he stopped Keytruda treatments in August 2022. Have the dislikes for certain foods dimished at all over time or are they as strong as ever?
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1 ReactionOh I am so sorry to hear that this is going on. Do you think that his saddle PE could be attributed to Keytruda? I hope not. My husband also had a malignant melanoma his was nodular and removed in November and the two lymph nodes were clear. He is supposed to start Keytruda next week due to the high recurrence rate of his but we haven’t even had a pet scan yet that is the day after. We’re thinking of postponing the Keytruda until after the holidays. I am hoping that the synthetic weed is helping your husband and that he’s regained his appetite I’m sure this is all very scary. I’m hoping for the best please keep me posted as to how he’s doing. 🙏
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4 ReactionsThank you for tagging the others! Unfortunately, the aversions are as strong as ever.
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1 ReactionThank you so much! I pray your husband does well with it. My husband did really well with the Keytruda for 7 infusions. It even allowed his body to attack and clear up his scaly squamous or basal cell activity on his arms so we were really pleased until this all happened. His thyroid also burned out but we had been warned that Keytruda could do that. The blood clots could be a perfect storm of Keytruda, a strong family history of clots (although no genetic link was found), and even Covid , although he never had symptoms or tested positive. He was vaccinated and boosted.
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1 ReactionThank you so very much, we are having serious second thoughts. I am sorry you both are going though this. My husband has not had his pet scan, we will reassess after that. He has a high reoccurrence rate . He is 82 and very healthy other than prostate cancer last year . You mentioned Covid, I had it and in the hospital 9 days, but never tested positive , I am 68, today actually , tons of antibodies after Covid. Glad your husband was not ill with it. I think we always wonder what damage it might have done. My husband was at home with his, barely any symptoms . Hoping your husband’s appetite increases. Thank you so very much for responding to me.
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1 ReactionHappy birthday!! Hope you had a great day!
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1 ReactionThank you…
No problem with Ketruda. It was radiation that got me. No interest in eating, but only nausea. I can tolerate yogurt, but that is all. Been on Ketruda every 3 weeks for 4 months with no food aversion. I just completed 10 radiation treatments. Three days after completing radiation, I had no interest in food. It has been one week and still no interest. I will try a piece of toast, but then feel nauseous. Even my morning cup of coffee does not taste good.
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4 ReactionsSorry to hear of the food issues. My Keytruda experience has been for metastacized non-small cell lung in my lymph nodes so a different form of cancer. I have been on Keytruda (400 mg every six weeks) for almost two years now and even with no evidence of disease they are keeping up treatment due to a lack of side effects. I know I am lucky on a number of fronts but there are a lot of Keytruda success stories. It just sounds like something other than Keytruda if the symptoms have continued after they stopped giving it to him. This may seem like a stupid question but, given the timing, could it be COVID-related?
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1 ReactionFood aversion is my most common side effect with chemotherapy. During chemo infusion I am given 2 anti-nausea drugs. I can't recall the names but one I am told is immediate acting and one is active for several days. I like yogurt and eggs well done and nothing else. I am also supposed to drink 2 quarts of water to flush the drugs out of my kidneys. I have trouble drinking more than a quart a day. Adding lime juice helps. Coffee helps and I desire the energy boost and a small treat from the chemo side effects.
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