Taste buds make everything taste TERRIBLE

[MikeG]

Hello, I was diagnosed with Stage 4 lung cancer (NSCLC) in March of 2021.  I've been on Tagrisso most of the time  since, still am.  Starting in August of 2022 my taste buds changed so that now everything I eat tastes terrible.  Not just metallic or salty or sweet but truly awful.  The only foods I can get down are Boost drinks/smoothies, cream soups that I just put in my mouth and swallow.  Really, if i can just swallow it right away I can do it.  The problem is I've lost a lot of weight, from 195 lbs in August to 163 lbs today.  I'm weak and shaky.  My taste buds have shown no signs of changing back to normal this whole time.

Have any of you reading this experienced this?  If so, were you able to overcome it?

Any suggestions?  

[LouT]

In 2010 I had surgery for colon cancer and for whatever reason during my hospital stay I "lost my sense of taste and smell".  That's not to say I couldn't taste or smell anything, but all food tasted like metal coated in chemicals.  All smells were the same, just stronger or weaker and the smell was horrible.  The doctor told me he "never heard of it", but a smart nurse told me that she had the same thing happen as a result of the drugs she was given after similar surgery.  The condition lasted around two more months (I realize yours has been longer as you are on the med continuously), but your symptoms sure sound like mine.  My wife tried everything; my favorite ice cream (YUK!), a dish I loved (NOPE!), and anything to help me get food down.  It just didn't work.  I was put on acid inhibitors and over time (without any further treatment meds) the horrible taste began to fade and finally (about 3-4 months after the surgery) I was able to taste food again.  The effects continued to improve slowly and finally I returned to "normal".  Please speak to anyone on your medical team that will check into a way to reduce dose or look at other treatment options.  Please don't accept anyone telling you that this doesn't happen.  The FDA has an article containing data on "Taste Changes With Tagrisso".

I hope you get some help and relief.  Most people don't realize how terrible a side-effect this can be for a patient.  Please follow up and update us here.

Lou

[MikeG]

Hi Lou,

Thanks so much for your response.  I realized after I posted the topic that I was in the wrong forum.  There was six months last year where the Tagrisso dose was doubled, six months ending in August.  Back on single dose now.  I suspect the double dose had something to do with this taste issue since I never had an issue with a single dose.  Good to hear your taste did come back.  Gives me hope that mine will return.  When it does I plan on putting those pounds back on ASAP! Thanks for the link, I'll read it.

[BridgetO]

Hi Mike,  I wonder if a dietician with oncology experienc would be helpful? 

[Kamoto]

Why did they double your dose.  Initial was 80mg?  If they try and double me, no way I’m doing it.  The stomach and diarrhea disorders from 80mg is bad enough

[Judy M2]

When I first started Tagrisso in March 2020, I was recovering from sepsis and life-saving abdominal surgery due to aftereffects of chemo and radiation. I remember not being able to tolerate certain odors, and in fact I still cannot stand the smell of bacon cooking. But I don't think I've had taste changes. 

I agree with Bridget that an oncology dietician would be a good idea.