Stinging tongue

sweetblood22 said:

Four weeks out is very early.
You must understand that radiation is cumulative and after he has finished radiation, he still continues to cook for a couple weeks after. I think that he is able to tolerate a milk shake that is a good thing. Yes, it does interfere with his willingness to eat because it hurts! It's so hard to explain the tongue weird feeling. I will try, but unless you have had it you cannot understand how difficult it is to eat and swallow. Not sure if your husbands tongue is like mine but this is the way mine was/is. My tongue feels scalded. Like I drank scalding hot McDonalds coffee straight out the coffee machine. My tongue feels sort of tight in places. My tongue doesn't move the way I want it to. I cannot move it around like I used to. I can't get food that is stuck in my teeth out, I cannot stick my tongue out, I cannot whistle anymore, I can't roll my tongue anymore, my 'th' when I speak sounds like 'ss', my tongue is smooth- you don't see any little taste buds anymore, my tongue is red and it hurts all the time. Normally about a 2-3 on the pain scale every day. Some things, like tooth paste, (I numb my mouth to brush) burn and hurt my tongue so bad it makes my eyes tear and my nose run. Some foods and drinks as well. Forget alcohol. It's like napalm in my mouth. The textures of things in my tongue feel weird. It's not as bad as when I first ended treatment, thank God. Since my tongue is extra sensitive things tend to feel extra grainy. Even mashed potatoes felt grainy on my tongue, like little b-b's. My tongue hurt so bad, that when my parents bought me Bryers Vanilla ice cream, I had to ask them to get the kind without the flecks of vanilla bean in them because it felt like little tiny shards of glass.

If he only has the stinging sometimes, that is good. I think that means he will get it back to normal. But it wlll take time. At four weeks out, I was still a train wreck. Actually that was about my worst. It sounds like Buzz is doing well to me. If he can use the magic mouthwash before eating that can help. I can't eat when my tongue is numb. It makes me gag. IDK I'm weird tho. The baking soda, salt and tepid water helps. And just time! You need to measure in weeks. For me it was months. I think it's hard at four weeks after treatment because you have been done for a while and you expect to be feeling better because you are fininshed with treatments but your body is not done cooking. It's hard, but you need patience.
Hope that the sores on his tongue heal quickly, that should help some, but it takes time. I took a very long time compared to others for my sores to heal. I remember I had sores in my mouth five months after rads. I was in the dentist office many many months after rads and the girls working on my tooth asked me why they were doing it when I was going thru rads. That's how bad my mouth looked. They thought I was still in treatment, meanwhile I'd been out for months.

While eating I have found that dairy products seems to take that sting away from foods for me. Adding butter or cream, marscarpone cheese, sour cream, and milk takes the sting away from acidic foods and adds the extra calories I need to maintain my weight. If you don't do dairy I don't know if other soy products would work. I have found that adding L-Glutamine to my juice drinks allows me to tolerate them better. You can add the Glutamine to water too. I got a large jar of it for about $30 in GNC and I think it does help and I am happy that I can juice again. Also, for a while flat Mug Root Beer was all I could drink besides milk. It has to be MUG brand and flat tho. It actually felt good on my tongue, well, much better than other stuff. That was a suggestion from the hematologist oncologist that I saw. I thought she was nuts, but she was right.