Apologies for not keeping current. While I posted after Jerry completed treatment, I have not kept up. Seems trying to get back into work a bit, giving our son a bit more care and dealing with other family matters -- gramma -- well, I've just been bad!
All things considered Jerry is Ok. There is however, this dang sore on side of tongue that just does not want to heal! Pointed out to doctor at 4-week check up and he just said it needed time to heal. Patience is becoming difficult. Jerry returned to work last week out of necessity and well, the talking required to conduct a days business has his tongue in so much pain he has returned entirely to tube feedings. I had put 8 lbs back on him but now that has dropped back to only 2-3. I worry that the departing 3 blasts of high dose radiation within 24 hrs may have permanently burnt off part of his tongue -- yes, I am the overreactive paranoid type but keep it to myself. Only here would I share that fear.

Anyway, suggestions, thoughts advice would be greatly appreciated. Jerry does have and use the magic mouthwash, he does rinse with salt and soda, he does topical apply oralgel, he does take antidepressants (getting pretty down) and ativan to sleep at night. Insisted on getting off narcotics early. Has no desire to get back on pain meds.

I just want to help him feel better. Although we do not talk about it to each other, there is definitely anxiety swirling around in our heads and stomachs. We do not return to doc until May 24 when he gets his CT and PET.

Thank you so much!

Hi, Gayle
My husband had bad burns from scatter off his dental work - maybe that's an issue. He found the viscous lidocaine useful for drinking meals just after treatment.
Did he talk to his RO, MO or ENT about the problem? I would try talking to one of the other ones - or their nurses.
Some on this site swear by manuka honey - we never used it, but maybe worth asking about.
Is it possible that thrush as adding to the problem?
Re pain meds - my husband got off the narcotics early, but did take Ibuprohen. Maybe ask one of the doctors about non-narcotic pain relief / anti-inflamtories.

Good luck to you both!

Thank you Maria! So this different than the 'magic mouthwash?'

Hi there the lidocaine is in magic mouthwash.. Does he have a tooth or something that is irritating his tongue? I find that happens with me occasionally - is it a sore or a reddened area - I know talking when it's painful just aggravates it. When I have a sore tongue day (or two!) I switch to soothing cool creamy ish type foods to help my tongue recuperate - I also am careful about which side I sleep on sleeping with the sore area pressing up against something isn't helpful. And having an ibuprofen will help with pain and inflammation. When I'm having a particularly bad sore tongue day I do go back to the manuka for a few days... But do keep a close eye on it... And show it to a different doc. Good luck!

Thank you Cheryld! It's not red and his teeth are perfect (hope they stay that way!). The best way I can describe it is a large, flat blister -- about 1-inch long by half inch high. It's been there from and since the radiation. Talked with dentist yesterday. He has recommended we go to an oral surgeon if no sign of improvement in 10 days. I'm just praying for no further intervention. I know Jerry is getting so depressed.

Remind me where I get the manuka? I was thinking that it was a prescription that our doctor was resistant to during treatment but now almost six weeks out perhaps it's ok? But then again, I believe what little memory power I had before all of this, well, pretty much gone now. So any prompts and reminders are always appreciated! Thanks again!

Hi, Gayle - the viscous lidocaine seems to do a better job of deadening the pain.

You can order the maunka online - Cheryl may have a preferred source to point you at.

Other stuff - add a humifier to Jerry's desk at work and next to the bed so that dryness isn't exacerbating the problem.

Text or IM him to keep up your communication - if you're not talking to him so you don't make his mouth hurt its likely not helping your relationship and his depression. Been there, done that, it took me a while to tell what was going on.

Ask him to help you with something he can do without talking or fatiguing himself. Maybe - pruning a tree in the nice spring sunshine, or reaching stuff in a closest, or putting moisture cream on your back. You're probably trying to do as much as you can for him - however practical, it may not be the best thing for him emotionally.

My advice to you, personally - get out for lunching and shopping with girlfriends if you can - you need a break, too!

Manuka honey can be purchased at health food stores or online. Not sure if it is sold thru Amazon or not. Whenever you buy from Amazon, please always remember to use the link located in the green box on the main forum pages. This will help OCF by giving a tiny percentage of your purchases back to OCF. This is a HUGE help to OCF as it is a very small non-profit that runs on a shoe string budget. By remembering to always use the Amazon link it enables OCF to maintain this forum and continue to help thousands of patients and caregivers.

Thanks again everyone from your timely responses!

Amazon indeed has manuka honey -- in fact, there are so many choices I would welcome a recommendation.

I do have two humidifiers that run in the house. Great idea tho to get a small personal one for his office.

I like the idea of shopping with girlfriends. Now if I just had a few girlfriends and some money to shop -- you've all been there with the medical bills too I'm sure. Not complaining - remain ever thankful that we had medical insurance!

Thank you!

Hi there if Rees a whole foods or health food store near you you. Can likely buy it there.

Brand isn't all that important - you're looking for 16+ organic... It can sting at first but then you feel a soothing to the area.. If its not an open sore it may not hurt much but it does help or it helped me - it's nature's hydrogen peroxide it's a would healer etc. hugs and good luck,

I think I would call the doc and rule out any kind of yeast or anything. Did he take Diflucan during radiation? Kevin had that every day. Once he stopped and his tongue got worse, they put him on it again for a couple days. Seems like that was something he put in his feeding tube because it tasted disgusting. Kev did have a sore on his tongue for a long time too. I think it was gone by Christmas. That was 2 months out.
GREAT to hear from you.
Kathy

Doctor did look at tongue and throat pretty hard at last visit two weeks ago. He put Jerry on an antifungal (nystatin, but duflocan does ring a bell?) since there was a slight showing of possible thrush. He just finished that a couple of days ago. I can only hope that two months, or sooner, is the magic date. While it still means another two weeks of inability to eat or talk well, it is something to look forward to. Thanks Kathy.

And Cheryl we do have a health food store, even in this little town. Will hit it tomorrow for the honey.

Thank you both so much!!!!

P.S. Thought about responding privately to you both but then thought perhaps if someone else is faced with an extended, slow to heal tongue sore, well, maybe this information can help them too! Thanks again!

Good luck!

Just checking in.... Finally acquired the manuka Fri. Not much time to note its help or not. Taking pictures of the tongue to monitor its progress. It does appear that the sore is shrinking some, but ever slow. Pics were 9 days apart and only marginally changed. Depression is strong so I keep trying to distract him with other things. He still sleeps an awful lot. I know every one is different but is that to be expected? Likely the depression contributes to that mental fatigue as well. I just want to cry and Jerry has shared he feels like crying a lot too but cannot. We talked about our sadness this a.m. and seems when we are feeling the welling up and lump in throat, well, it's simply not the time or place. When it is the time and place, well, both of us convince ourselves not to. A lot to be thankful for; especially both thinking about our neighbor who was diagnosed with liver cancer early last fall and they have found nothing that it has responded to. She was removed from all treatment to be able to feel 'human' again after months of chemo. Yep. We are both very thankful! Just wanted to check in. THanks everyone!

Hi there - yes - sleeping is very normal radiation kick the poop out of you.:)