Hi -

I am currently starting week 6 of my Tomotherapy IMRT treatments. 23 of 35 completed. So far, I have no real swallowing pain or difficulty and mouth sores have been mild and minimal. Saliva is also enough to not be uncomfortable. So, I feel fortunate for that. However, the taste issues have been terrible for me. What foods / liquids I can taste generally taste like soap or glue (at least that's how I imagine those things to taste!)

My question is, how long does this last? I've heard some people day they get their taste back in 3-4 months and others say up to 2 years, if at all? I find not being able to enjoy a meal very depressing and to think that I will have to live like this for months or even years to come is unimaginable to me.

Can anyone comment with their experiences?

Thanks in advance -

Mike

Mike
You sound exactly like Bob during TX. Food was his passion and he'll tell you the main cause for his depression during and after treatment.
While he still doesn't have all his taste back he is at about 90% two years out...He can now even tolerate some foods that I find too spicy like General Tsaos chicken and Chorizo sausage??
chocolate still tastes bad among the few old favorites he misses and vinegar seems to bother him sometimes. The first thing he got back only a few months after treatment was coffee?? So now he is a connassuer of sorts and imports his Kona from Hawaii...He has also developed an addiction to fresh tomatoes especially on pizza??
It is a slow road for sure and frustrating but doable. After it gets worse believe me it will get better. A year out seems like forever away now but it really seems to happen faster than you would think especially when there is healing and steady progress. You will be normal it might just be a little different.
Peace
Denise

Denise,

I was similar to your husband when it came to coffee. Before cancer, I used to enjoy really good, fresh brewed coffee from certain kinds of beans. During radiation, and for awhile after, I couldn't tolerate any kind of coffee at all, and when I first began drinking it again, I couldn't distinguish "good" coffee from "bad". I knew I had finally turned the corner with my taste buds when I got to the point where I could tell the difference between French Roast and Kona (and the difference between fresh brewed and the stuff that had sat on the burner for a couple of hours)!.

Cathy

Cathy, I had a similiar experience with coffee....always loved my coffee, enjoyed several cups a day....then, radiation.......I guess I went almost one year without coffee, reason being I could not taste it and I was afraid of burning my new tongue. I am back to drinking it now, at least one cup a day, it does tend to dry out my mouth a bit though. But I still LOVE it! And Mike, EVERYTHING tasted like cardboard to me after radiation....I rarely ate or drank anything, gradually, my speech therapist (bless her heart) got me started again with baby foods. I finished radiation the end of August and by Thanksgiving was able to eat a few items, so that wasn't tooo bad. I know it can be depressing though, so many things revolve around food and meals, etc. It will get better. God Bless and Take Care, Carol

My husband, Tom, is struggling in this area, too. Though it's just been 2.5 weeks since the end of his radiation treatments, his throat is feeling better and he wants to test his taste. I am worried about him trying too soon and getting discouraged, but he has tried orange sherbert and ice cream (those were the last things he could taste) and both taste yucky. In the spirit of "getting back on the horse that bucked ya," he wants to keep trying. I got surprisingly little info from a Google search on "reintroducing solid food." I've read a few (like Carol) refer to their speech therapists gave them advice on what foods to try first. Can anyone give me some advice on what those first-step foods/liquids should be, when the time comes? Thanks!

I just remembered one tip he got when things were tasting metallic from chemo was to eat with plastic utensils and that really did help.


Joyce

I finished treatment on August 9th and last week I could actually eat a full day's of calories again without using my PEG tub.

I don't like most things still, because they are too dry for me to tolorate (and that was with IMRT and low doses on the opposite side of my neck). That said, cereal with milk (Sugar Pops are my favorite right now) and tortilia's broiled with mozzerella cheese dipped in ff sour cream ar also good. I am doing much better with really bland foods than with spicy.

I know it is hard, believe me, I am a good cook and lover of food and I literally thought about food everyday on the radiation table.

My last treatment (30) was also August 9, I never needed a PEG tube.
At about 4 weeks I noticed my taste slowly coming back (sweet first), most things taste OK now, just dulled. I agree about the coffee thing, all the subtlety in flavor is missing.
Biggest problems in eating are dry mouth, sore salivary glands (can

Mike,
I had a stage II tumor in my left tonsil and had 35 IMRTs. I was a lot like you. I did real good up to the last week or so of treatment. I started to loose taste in the second or third week.

I want to point out that eating was an important "event" for me. I was not a great deal over weight but I loved to eat (I lived to eat). The third or fourth week, I began thinking that I would never enjoy eating again. It became a chore that I did to survive. By the way, I did not have a PEG tube because I only lost seven to ten pounds in the first four or five weeks(I lost almost sixty pounds after that). If I ever have to go through this again, I will insist on a PEG.

Now the good new! I started getting my sense of taste back within four or five weeks after radiation ended. Sweets came first and other things followed. I still don't like coffee as much as I did and I don't tolerate hot spices (I use to add Tabasco sauce to everything) but I can eat almost anything I want and enjoy it and I am only three months out of radiation now.

Mike, this is going to be a tough battle, you are nearing the front lines right now. As things get tougher, remember you can beat this and there is life after cancer! I am now able to enjoy food, I am gaining weight, and I am starting to enjoy life again.

Try to remember that three months ahead of you seems like a long time but three months behind you seems like a blink of the eye.

Stay strong, fight with all you have, and never, NEVER, give up! You will come through this stronger than when you started.

God bless,
Max

Hello Mike, I finished radiation/ chemo/surgery in Jan. I was most distressed about losing my taste, I missed it so much and fretted that it would be permanent. Well mike it is pretty much back and has been since around June. I know that in January six months seemed like an eternity. But it will arrive. The only problem I have is a bit of dry mouth and my neck/face/ear and shoulder are still numb from surgery. I can deal with all of that, life is good and getting better. hang in there my friend and above all be positive and you will be one of those who figure out how to deal with this in a positive way.
lenny