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Loss of Taste

Forums General Melanoma Community Loss of Taste

  • Post
    kevin
    Participant
      Hi,
      First post!!! I am in a Yervoy-Opdivo trial but I am currently on 4 week doses of Opdivo only. After the first 4 week dose, I completely lost my taste. It was a minor problem while on the 2 week dose. Now it is terrible. I have completely lost my desire to eat. Does anyone have any suggestions to alleviate this? Thanks for any suggestions.
      Kevin
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    • Replies
        Bubbles
        Participant
          Hey Kevin,

          In the environment of rampant COVID, the first and most important thing you may need is a COVID test. However, if that is negative and out of the way, I will say that when I was taking nivo as a single agent my taste and smell were very much affected. Not only that, the nurses in the Research Unit in which I was given my infusions noted that it was a common complaint among patients.

          For my part, all things smelled and tasted very “metallic”. I thought that I even exuded that smell, though none of my dear ones said they smelled it. The nurses said lots of patients reported the “smell” as one similar to ‘canned corn’. As I went forward I suffered a great deal with a very dry mouth – something that has not totally resolved even today. Later oral lesions became a problem. So, all of this contributed to loss of appetite and subsequent weight loss.

          Not sure that this is what you are dealing with and certainly don’t feel that this is predictive of the development of oral lesions in your future – as the nurses – and much later other patients on various forums and even in a few scattered reports – note disruptions of taste as a single entity have occurred. As to any words of wisdom – I have but few. Drinks like lemonade were very helpful – I felt like they tasted as they should. I also liked vinegar as have many patients I have taken care of when on traditional chemo. Here is a story about a little one I cared for years ago: My Life with Cancer

          For what it’s worth. Hope this helps a little. I wish you my best. Celeste

            Lucas
            Participant
              Kevin, have you been tested for adrenal insufficiency? Mine went undiagnosed for a year and really destroyed my quality of life. I lost a lot of weight and didn’t have much desire to eat. There were also many other debilitating side effects that came with it.
            kevin
            Participant
              Thanks Celeste,
              By vinegar, do you mean salads?
              I will try anything to get my taste back. I just took 13 acupuncture treatments for dry mouth. No help. He told me that cures are tough while you are still taking the infusions. I am down 50 lbs since treatment started in July. I am not currently in freefall as I drink protein drinks, milkshakes, etc. but my quality of life stinks. The treatment has been successful so I am trying to hang in there at least until the trial is complete.
              Kevin
              Bubbles
              Participant
                Pickles, etc. Like the ones I brought to the little fellow in the story I shared.
                ThinkingPositive
                Participant
                  Hi Kevin,
                  I lost smell which decreased my taste after COVID in November. I put my homemade sauerkraut on everything as sour was the only flavor I can sense. Keep finding ways to get good nutrition and I hope your taste comes back in time.
                  Mark_DC
                  Participant
                    Hi Kevin,

                    I think Celeste remembers what I went through better than I do. I do remember now some metallic taste or just loss of any interesting taste. So I didnt particularly want to eat. And I lost 25-30lbs. (I had gained when on steroids!). Not completely unwelcome – I dropped a few sizes – although of course I was worried that this was a sign of something more sinister. Fortunately it was not.

                    I think I turned to spicy foods (I love Thai and Indian food anyway) – I needed something with taste – and I think also ice cream (I could indulge in this with fewer consequences!). Red wine too once my liver numbers improved.

                    I have since regained most of the weigh loss (sadly). Celeste is right too about checking for covid, good idea.

                    I hope the treatment is working and that you find interesting things to eat. This may help stabilize and then you should regain once you are off treatment.

                    Best wishes Mark

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