Tips for regaining taste after treatment (head and neck cancer)

[Christian79]

I am in week 8 of my 7 week treatment. 35 sessions of radiation (one each weekday) and 3 rounds of chemo (weeks 1,4,7). 

Prior to this I was diagnosed with HPV+ cancer on the base of my tongue and in my right lymph node. 

I'm 42 years old, 2 kids, married and count my blessings every day. 

Reading through others stories, I am in the worst part of the process right now, and it does feel this way. 

My main concern is about taste. I would estimate that I have about 2% of my original taste. My saliva is thick, but not as bad as others have described. Still eating something like bread or a scone makes me gag. 

Looking at doctor google, I have seen the following recommendations for taste:

1. Zinc supplements

2. Eating watermelon

3. One of the rad oncologitsts also said that a product called 'miracle berries' can help (estimated 1/3 of people found them helpful). Needless to say, they are on their way. 

My speechie is most concerned that I'll lose my swallow function, and has implored me to eat solid food regularly, which I am doing. Today I ate porridge, 2 minute noodles and rice cream. 

It is a little ironic for me to be concerned about taste. I had previously commented that the work of a chef is lost on me, and have never watched a cooking program in my life. Now I think about food constantly, and am very fearful that I'll never enjoy food again. 

I am keen to hear your tips / stories / advice. 

[OzStu]

I had exactly same treatment as you.   First, the problem you have with bread etc, is probably mostly because of dry mouth.  Short term solution is simply, sip something with every mouthful.  Long term solution.....well......I'll give you mine.  I'm 2 years and 10 months out of treatment.   My saliva and taste is excellent.  Well, if my saliva was measured it would probably show that it's still less then normal, but I'm going by how it feels, my lived experience.    Ok, first thing to remember is that your mouth will produce more saliva when it's stimulated.........so......stimulate it all the time.    Eclipse sugar free mints......peppermint flavour seems to work best.  They replaced me carrying a bottle of water around with me everywhere.   Just suck them all the time and if you have at least marginal saliva production........you will  probably find the mints very helpful in keeping your mouth moist.    I'm just telling you what I done here,  and it seemed to work for  me,  so you can research and make your own choices, but I got myself a  Near Infrared lamp, and I used it......point blank range, straight up under my jaw.....for 15 mins per day.   After about a year of this,  my saliva  production is what I consider to be normal.....like I remember from before I had radiation.  Maybe just a little less.

As for your swallowing, yes, if you don't use em, you'll lose em.   Get yourself some nice juicy porterhouse steak.....smother it in sauces and creamy stuff.....and bog in.   This is how you get your taste back too........eat......all different stuff.  

[Christian79]

Thanks for the reply.

I'm pleased to say, 4 weeks out from completing treatment, most of my taste is back. I can't taste sweet things, but that seems to be changing a little each day. Hopefully I'll be able to taste Xmas dessert. 

I've put on weight and am making a point of exercising every day. I take vitaman E jubes (one a day). 

If anyone else is going through this, I'd recommend you eat what you can, even if it is not tasty. Learning what is gentle on my throat (smaller mouthfuls for the win) was important. I started with soft pasta and mixing in vegies / flavours. I was not particularly fond of salmon nor yoghurt pre-treatment, but both are my favourites now. My appetite is in full swing, and life feels pretty good again. 

[OzStu]

If you're like me, the taste for sweet things will return very, very slowly.  Until then, sugar actually seems to make things taste worse.   I started using artificial sweeteners in my coffee, and drinking diet coke and red bull zero when I did have a drink of soft drink, and I found that artificial sweeteners actually sweetened things, where sugar did not.   This cured my sweet tooth, and I was better off for it.   I used to eat chocolate every day,  jam donuts, etc, etc.   They lost their appeal.  They didn't taste crap after my taste returned, they just didn't have that super yummy addictive taste they used to have.   Over two and a  half years after treatment, I'd say my taste is completly normal again, but my sugar addiction is cured, and I wont return to eating all those bad things again.