Hi there I just hit the 10.5 month mark with rads my one year post rads will be may 4, about 2 mos after treatment I could eat comfortably. Up to that food was not terribly pleasant particularly with my throat being sore not agonizing - just uncomfortable. Taste has come back slowly. It's almost like rads dulled my taste. And every week or so I note improvement - strangely enough foods in their natural state taste best. Additives etc,, set me off - pop tasted like turpentine junk food just tastes wrong - still does somewhat since my sweet and salty are sporadic though getting better daily. Spicy not pleasant but I'm getting better with vinegars actually had a salad yesterday that was terrific. some people say they note improvement after 2 years. It's very dependent on your body. Tomatoes were unpleasant for a while. But have gotten much better! I do notice that I get the full taste of stuff for a bit then it might Peter out think at that point my buds are overwhelmed. But it's probably at about 75 % now. I do think that you have to keep trying, maybe just repetition helps as well. I am getting the nuances of food much clearer now. Hugs... Try not to Despair - be patient with it - it does come back for the most part. I don't do meat so I can't comment on ths part but I'm sure someone will. Take care. These last few weeks are hard but we're here.

One of the only times I've seen my husband shed a tear in all this was as he stared at a plate of food he would normally have LOVED. But he didn't want it. He wanted to want it so badly but he just couldn't. But he HAD to have something. It wasn't about the pain of swallowing, although there was some of that. It was about nausea or no taste or funny taste or just bad taste. It broke my heart.

We caregivers are at a loss for how to help. Most of us try various things along the way -- tough love, yelling, arguing, being nice even. Ultimately it all comes back to you though. Somehow, some way, you've got to do it.

Your guy is probably just doing the best he can. Is he young, like you? Hopefully he'll be there for you to keep butting heads with. Because if he isn't, then the only one left to argue with about this very important thing is, well, you.

All the best and I am so sorry you are having to go through this.

Marie, welcome and I'm glad you've found us. I really feel for you with what you're going through. Please listen to what all these veterans are telling you, especially the part about things getting better! They definitely will, even if right now you feel terrible and that the treatment is endless.

The thick saliva and mucous is normal... which doesn't make it any easier to deal with of course. You might ask your medical team about Caphosol mouth rinse, it may help in addition to the water and baking soda. If and when the mouth sores return, if it becomes especially difficult to swallow anything you might also ask for some viscous lidocaine to numb your mouth temporarily.

I found that the return of taste and the desire to eat came back gradually beginning maybe 3 months after the end of RT. Yours may return earlier of course. Sweet things always tasted ok to me and it was the Ensure clones that got me through it. It took a good year before I was ready for things like tomatoes or citrus and, like Eric, I can no longer tolerate the spicy stuff I used to love.

But all that is a small price to pay, and please let me reassure you again: It will get better!

Keep posting. Everybody here is on your side.

All I can really say right now is Thank you, Thank you, Thank you. Yes, my boyfriend is young like me and has seemed to come around as he has seen me trying to get my nutrition through the shakes and the benecalorie and at least eating the oatmeal. It's something. It's really encouraging to hear that it does get better because when you google crap all you get are horror stories because, of course, the only time anyone wants to bitch or speak up is when things aren't going their way. Tomorrow is only 2 more weeks of rads! But I will say I found another little bump on the underside of my tongue that looks a lot like the one that popped up that made me go in for my third surgery that also came back positive for cancer. Had a little meltdown last night and my boyfriend was really supportive and told me to see my radiation/oncology dr. tomorrow and to call my ENT who has done my surgeries and said we'll go see him. It's been a while since we've seen him since my last surgery anyway. Hoping it's just a radiation side effect.

Hi MB (I shortened your name ;): I didn't have your type cancer, but sure others will chime in soon as to your new "find" this soon, and while you're still in treatment. I just wanted you to know that I will be praying for the bump not to be cancer - it could be anything, but that's easy for someone to say if it's not happening to them. I go "ape" every time I find something new in my mouth area now, even though I had tonsil cancer 4 years ago. Also, I need to stop the google crap too because I agree with you on that one. Let us hear from you after your doctor visits tomorrow.
julieann

The spot may just be radiation issues. I had sore spots on my tongue since it was so swollen from rads it was being pushed up agains my teeth. Radiation makes your mouth super sensitive to many things trynto to worry but Bo show it to your RO. Hugs good luck tomoRrow.

Marie,

My wife made me a ice cream shake made of chocolate ice cream, a few spoonfuls of peanut butter, and scandishake during the tough times of chemo and radiation therapy. chocolate barely registered with me.

The other option - orange soda! go figure!

I lost 40 pounds in 7 weeks, but my taste buds did come back - ever so slowly - and I hope it does with you.

Best,

Sam

Just thinking about you and wondering how you are doing. Must be really close to finishing radiation. Drop a line if you have the energy.

My RO just gave me this last Wed-Fri off for a long weekend because I was in so much pain. It definitely helped and I finish this Friday. Absolutely cannot wait! I spent my long weekend with my boyfriends parents up in Northern AZ and was elated to eat some pancakes drenched in butter and maple syrup! lol Also - his mom found a weight gain powder, ya know the kind I assume bodybuilders would use. It says to put it in milk or water but I've been adding it to my oatmeal and pancakes. 2 scoops a day=1500 calories!

I did see my ENT and he said it would be unlikely that something else would pop up during radiation and that it was probably just a side effect. My neck did become really red and sore but peeled just like a sunburn and my skin looks great now that we're not radiating my neck anymore. All in all I'm feeling a little better and more optimistic about the future.

Though I can't always taste everything on my tongue I can make out a lot of things 'from the back of my throat.' Does that make sense to anyone else? Is that common? There are a few things that just don't completely register at all but for the most part I seem to be able to make some things out still.

Sorry I haven't been around to post much but I was having a pretty tough time up until my break. Feeling pretty ill and weak. But I can see the finish line and I just can't wait to start healing! I'll see my RO tomorrow and be weighed but last time I checked I had only lost 21 lbs. Doing my best not to lose any more. Thanks again for all the support and feedback. You all have been just awesome.

Marie<3

Oh yeah! My cousin found this book by Chef Grant Achatz that I started reading. I'm sure more people than I realize have heard of him. But he was diagnosed with cancer in his tongue as well. I can't imagine a CHEF of all people being stricken with this awful cancer. Anyway - I'm halfway through. Haven't gotten to his illness yet but I will probably finish it in another afternoon. Very engrossing so far. I encourage anyone to read it that hasn't.

Marie