Taste still not returning

I took about as much time to regain taste... and when it comes back, it will in baby steps. Time will deliver...

DMBE4L,

Yes I do have an idea, at least if you follow a similar food and eating path which I took.  According to my timeline, you should not begin “true” new normal eating and tasting until (August + 7 months) the first week of March.  AND that first week of March will be great.

Time is the holdout card, it is different for all of us.  I did have some good (taste) surprises all along the way.  The only way to know if you have any yummy treats just waiting is to try a taste of everything.  No kidding, this is a life challenge and if you are fortunate as many of us, you will be successful in your journey back to the land of eaten (Matt humor).

I don’t think you are being punished; you already were with the cancer.  Now, it is just a test of your character.  I happily drank a ton of smoothies, but was even happier to retire the blender when it came time. 

My wife and I and my boss and I shared many lunches where I was drinking mine and they were enjoying a burger, that is now years behind me and it just was a time that was.

I really hope the best for you.

Matt

CivilMatt said:

I am hoping for all the way back.

DMBE4L,

Yes I do have an idea, at least if you follow a similar food and eating path which I took.  According to my timeline, you should not begin “true” new normal eating and tasting until (August + 7 months) the first week of March.  AND that first week of March will be great.

Time is the holdout card, it is different for all of us.  I did have some good (taste) surprises all along the way.  The only way to know if you have any yummy treats just waiting is to try a taste of everything.  No kidding, this is a life challenge and if you are fortunate as many of us, you will be successful in your journey back to the land of eaten (Matt humor).

I don’t think you are being punished; you already were with the cancer.  Now, it is just a test of your character.  I happily drank a ton of smoothies, but was even happier to retire the blender when it came time. 

My wife and I and my boss and I shared many lunches where I was drinking mine and they were enjoying a burger, that is now years behind me and it just was a time that was.

I really hope the best for you.

Matt

Hi Matt, It has been 2 and half weeks since radiation on neck ended. I had one big chemo blast. I had 2 surgeries to remove the source of the cancer (back of tongue) and a third to remove the neck tumor and 30+ lymph nodes.

I've been going through this since late July 2017. The side effects from the radiation are working me. Thick saliva, dry mouth, no appetite, warped taste buds and lack of energy are on me everyday. I want to eat again. I want to eat as a normal person would. I am guessing I am in for a long haul before this ever happens again. Any thoughts on timetable to normal?

I read somewhere that if the olfactory nerve ( smell) is affected some people have their taste affected rather than smell. Or both. Nerves take a long time to heal. But I see that your olfactory nerve was ?partially sacrificed so it is still early days. Your surgeon might be able to answer this best as he/she knows exactly what they did.

I'm only 4 weeks out and feel great, doing practically anything I want execpt eating. No taste but I can smell and things appeal to me but if I try to eat it just doesn't happen. Feels terrible in my mouth.

All we can do is hope that it does come back some day and hope for the best.

It's interesting to see the variation in what treatment has done to our taste and smell. I had absolutely no taste or smell for 8 months after radio and chemo and then it has slowly improved. However still nowhere near what it used to be. Spicy foods are intolerably hot/spicy even if my kids say I'm being a baby about how spicy the dishes are. I still have only about 80% of my saliva- this took over 2 years to slowly come back. This frustration is something we share and not being able to taste/smell and the lack of saliva is tough from a quality of life point of view.

I had surgery to remove tumor on my tongue SCC stage 3 ,4cm tumor on right side of my tongue.(Aug 1,2017)They threw in a surprise radical neck dissection and took 30 lymph nodes. 5 days in the hospital, feeding tube,4 drain tubes in my neck,the whole deal. I am 50 and was very healthy 6'5 245 lbs and never really been sick,have never had to be in the hospital, just a day surgery and the normal accident visits to the ER lol.

I had to do the 30 round radiation, chemo not recommended. Finished up on Dec 1,2017. All through Nov and right over Thanksgiving, so I know what everyone means when they say the holidays are tough when you cannot taste or even eat, its a real test to the human psyche. They told me the week after rad was going to be tough and let me tell you,that was an understatement.

The concentrated on my tongue and neck basically along my neck line where the dissection scar is. I was eating pretty decent all the way through the radiation and drinking Boost Very Hi Calorie (540 ea serving!) A week post rad no food intake, losing weight, on Gabopentin and Dex, Dalaudid liquid and getting depressed. So yes, I know what yall are going through and I want to help any way I can.

For taste.My dentist said the best gift I can give you, is to get on Amazon and order Zinc Sulfate and take it three times a day. It worked for me,I took it religously and can taste just about everything after having my tongue blasted for 30 rounds. It is still healing, still scabbed up a bit underneath, but taste is here and the Drs cannot believe it, they actually think I am stretching the truth. Get the Boost and the premier protien shakes you can mix them together 3xs a day and they will help maintain weight keeps some energy up too.

Yall have to understand that this cancer treatment and the surgeries etc does not just affect your body,outward appearance, ability to eat and taste, but your emotionally exhausted too and have to give that proper consideration as well. The Holiday timing sucks too, really bad.

Time has to pass. It seems to me like time is crawling by waiting to heal. I was very healthy, quick healer, bounce back from anything ready to rock and roll always. Not anymore, this is a slow process to let your mind and body heal from. Yes it is frustrating. And you will hear a million times "well everyone is different" and thats certainly true. But in my opinion you have to buck up and power through it, get tougher than you have ever been, dig deep! Use all your resources especially the people and your support around you. Think about how lucky you are. Positive thoughts. Power down that smoothie even if you are sick and tired of it, your body needs it. Food is better medicine than what you are getting from the pharmacy. Ok this is getting long but I want to help because I know what its like. I lost my Father to kidney cancer and a best friend to pancreatic,I am familiar with this ride. If this helps one person it was worth my 2 cents!

christine2080 said:

Thank you

TroyBurkle, Recovery during the holidays is so tough. My husband finished 35 rounds of radiation & 6 Cetuximab on November 21- the Tuesday before Thanksgiving. You’re so right about powering through this. He has started eating food and I know he can’t taste but 20% of what he eats, but he’s trying everything. Thanks for reminding me about zinc- I’ve got to get my husband some tomorrow. Thanks for the pep talk and words of encouragement!

No problem.Just remember to make sure it is Zinc Sulfate otherwise it wont do the same thing. I couldnt find it at Whole Foods or Sprouts I had to get it on Amazon.