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Does Anyone Have Experience With Loss Of Taste Resulting From Treatment?

A MyMyelomaTeam Member asked a question 💭
Atlanta, GA

I'm experiencing 90% loss of taste from daratumumab (Darzalex) and talquetamab (Talvey). This is not an unusual after effect of both infusions, but I'm wondering if the taste fully returns after a defined period of time or are there remedial steps I can take (e.g., acupuncture) that help help make eating more enjoyable?

April 5
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A MyMyelomaTeam Member

I don’t crave cooking and had that weird taste feel, certain things stand out more like add more spice, I cooked for a family of six for years, it’s very difficult now with MM. I learned to pick a soup/chili- buy storage freezer cubes -1or2 cup on Amazon, freeze then place in freezer bags, you get a nice stock pile and easy to reheat. It’s helped me a lot. I also try to juice veggies for 2-3 days. No one wants to cooks and chop everyday when we feel tired. Doctor asks me how good I’m eating- I say. I tell myself
It’s breakfast- lunch-dinner time, if small oh well I know I ate 3 meals- he seams fine with my response. I’m not a snacker. I also have protein shakes in frig that I drink, try for one a day but doesn’t always happen. Good luck- it’s hard if someone isn’t cooking for you. Which I had to figure out for myself and I kinda get mad when my husband wants my juices and soups haha He knows somedays I’ll be nice others I will say no because I’m looking out for myself, takes a lot of time to shop, make this stuff and get idea 😂 I do give in more then not

April 5 (edited)
A MyMyelomaTeam Member

I have constant metallic taste in my mouth. I have been eating more spicy foods BUT I have a stomach problem now and it feels like I am developing an ulcer. Just had an endoscopy and I have an inflamed area at. The upper part of my stomach and an inflamed area at the bottom of my esophagus where it joins my stomach. So now the spicy foods are out. I also have soups frozen, I cut ribeye steaks into three pieces and freeze them. We bought two big prime rib roasts and cut them into steaks. Winn Dixie had them for $6.99 a pound before Easter so my freezer is full. I was told by my oncologist to eat more red meat because of my anemia.
Thankfully my husband and our daughter do 80% of the cooking. I still make my 3 1/2 hour pasta gravy. Sweet Italian Sausage, meatballs, small piece of beef, small piece of lamb, and a pork steak, all of the meats are browned in olive oil with garlic, everything is added to the sauce and cooked 3 hours, then the meatballs and sausage is added and cooked for the last thirty minutes. This and Mac-n-cheese, meatloaf, and rice are my contributions ( other than soup) . I do sit at the table and peel vegetables when I know the menu! Hahaha! But I get fussed at when I do it. Ok, I am off here for the night, Good luck and God Bless.
“Teece “

April 6
A MyMyelomaTeam Member

Thank you. Very helpful. Im also experimenting with different tastes, seasonings, etc., but food has list its appeal.

April 5
A MyMyelomaTeam Member

Hello

During my first line of treatment I had some issues with taste but it was manageable. During and after my stem cell transplant it was terrible. Currently on a third line of treatment and still having taste issues. Some of my previous favorite foods I have no desire for. Using different seasonings and trying different foods; has helped somewhat.

I eat for nutrition because I don’t have a desire for food.

April 5

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