Loss of Taste

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

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