Hello and Taste Question

zimrx17

Wish I would have found this discussion board sooner during my treatment. Diagnosed with p16 and p40 HPV+ Squamous Cell Carcinoma, with primary tumor on base of tongue and lymphnodes on both sides affected on 11/1/2021. Completed radiation and 3 doses of cisplatin on January 20 and clean PET scan in April. All follow up scopes have been good. I am incredibly blessed, it was a rough journey (preaching to the choir), I lost about 60 pounds in 4 weeks and had to get a feeding tube. My main question is how long has it been for taste to fully come back for you all? I have some, but it is still very muted. Ice cream, soda pop and sweets taste horrible. With ice cream I get maybe 1-2 bites that tastes really good, then it just disappears. Still having dry mouth but it is getting better. I have been reading other posts and it seems I have shared some experiences with you guys.

Hope you have a great Thanksgiving.

steven59

So you're a year in and still waiting? The Dr removed both my lymph nodes and tonsils after tonsils on both sides were ssc positive. my right lymph node came back negative, but better safe than sorry right? Surgery for me was 10/10/22 my saliva and taste are compromised and much of my neck is still numb. I chose surgery and radiation over chemo and radiation with no regard to side effects except listening to conversations from other patients and watching my mom go thru it, chemo, in my mind is a last resort. Proton radiation for me starts next week and i'm told side effects can be as severe as post surgery, but I should recover fully within a year. This Dr was the only one to say that with all other Dr's and PT's telling me there's no way to know. Happy turkey day.

wbcgaruss

Hello zimr and welcome to the forum. Congratulations on getting through the brutal treatment, as you found out. So it could be a bit yet, as far as regaining taste. Some have gained back taste even up to 2 years or more post-treatment but the further out you get the less likely it will come back, say someone 5 years past treatment will have most likely all they will get. There is no way to determine it either because each person and each case and each radiation field and strength are different. Be thankful for anything you get, there are 2 men in our local Head & Neck cancer support group at the campus where we got our treatments that have no taste and I feel bad for these guys. I would rate my taste as about 30-40 percent of pre-treatment. I have just enough taste that I can still enjoy eating I always tell people. And I am thankful to God for everything I have and consider myself Blessed. There are so many others with a lesser outcome than mine, but also many that have fared better.

What you describe when you said "I get maybe 1-2 bites that tastes really good, then it just disappears" is pretty normal in our H&N world. I have had the same thing happen and it makes you wonder why something can taste so good and back to normal and the next bite is bland.

As far as what they told steven about it taking a year for the recovery they are correct,l this is a major brutal assault on our system and can easily take a year or more to get to our "New Normal". And I say new normal because I don't recall of anyone going through H&N treatment of chemo and rads without having some sort of leftover after-effects, it seems no one gets off scot-free. I have quoted my radiation nurse often when she told me before treatment started that I might as well figure a year off of my life till I was done dealing with this and she was spot on.

So just keep the faith and hang in there you still have recovery time to go and plenty of chances for things to improve.

Take care, God Bless-Russ