Hi all,

Well you were all so right about the first week after treatment. I have not been telling my husband about all that you have said. I did not want to dampen his spirits. He had to remain positive to get through the radiation and chemo. His mouth is not any fun now. He has sores on the side of his tongue, right side in particular and when he does his fluoride at night, he almost hits the ceiling for a short time until he can rinse it. I have the Manuka honey and have for awhile. It did not appeal to him up until now because it is to thick and sweet and he is very worried about it staying on his teeth. I did coax him to try to start using it. He is willing now but is it too late?
I am staying home with him this week and we will just have to be strong, especially him, I am not the one in pain.

Any other ideas for those sores? He keeps asking me if this will be two weeks or more and says "do you know something I don't know?" Frankly I just tell him that everyone is different, which sounds like the doctor but I really do not know what else to say. I try to remind him that he did very well for the majority of his treatment and at least that part is behind us.

Will be tougher now but I guess that is how this dreaded treatment and disease goes.

EllenB

Ellen, sorry to hear that your husband is not doing as well as he was. I kinda expected him to show more signs than he did. He has gotten thru it very easily. When I went thru it, about week 3 I was a mess only to go even more downhill. For most of us the first 2 to 3 weeks after finishing radiation are the worst. Dont be surprised if he loses his voice for a little while.

From what Ive read from the Manuka honey users on the forum, its never to late to use it. Give it a try. Hope it works!!!!

Take it day by day. Keep up with the nutrition and your husband will bounce back. One day he will wake up and feel almost like a real person again. Thats when he will know he is better. It will be ups and downs for the net month or 2 but soon the good days will outnumber the bad ones.

Hang in there!!!!

Ellen - do you have viscous lidocaine for the sores? I'm sure your doc will prescribe it if you ask. It's short term but might give him some relief for things like drinking and fluoride trays.

Ellen - so sorry to hear your hubby's feeling the effects. I don't know your husband at all but I do know that for me knowledge was power - of which I felt I had very little at the time. It meant a lot to me to know what was ahead of me and the timeline - I knew I had to make it through 6 weeks of treatment and then I knew I had to survive the 2 weeks after treatment. I waited everyday to feel better - I'm not sure how my psyche would have been affected if I actually felt worse every day when I expected to get better. I guess I'm suggesting that it might be better for him if he knows what to expect. Just my opinion based on my own experience.

Also - my mouth was so sore that I couldn't use the fluoride trays for a few weeks. The RO said not to worry about it - that the fluoride actually irritated the tissue and impaired healing - so the benefit to the teeth was not worth the irritation to the tissue for the brief period of time when the healing was priority. So ask the MD - might be ok to skip the fluoride for a short time - less pain and potentially faster healing!

Good luck - this is the worst of it - he WILL get better!!!!!

Thank you all once again. He actually called the hospital and the doc on call said take a night off if it really hurts. After seeing what Jennifer said, I wonder if he can take some time so that he will be less irritated. As he said it is a constant battle between protecting his teeth and allowing the sores to heal. He is going to ask his dentist and doc to see what they say.

Except for that he is still chugging Carnation and swallowing. Tough times for sure. We do have the viscous lidocaine too. We could try that. I am still encouraging swallowing and talking when he can so he doesn't lose ground. Need to get these next two weeks. You are all so supportive.

My husband had a couple of rinses for the sores - Stamford's #7 and a tetracycline based swish and spit. If your husband's personal dentist is not familiar with dealing with oral cancer survivors, his team at the hospital can probably make a referral.
My husband also had to take time off from the flouride trays.
Take care and best wishes to both of you!

You say the fluoride is painful? What is the brand and type? Hoping I don't get in trouble with the moderator for promoting a product, but in Canada they sold me a neutral pH 0.5% sodium fluoride gel called PCxx Anticaries Topical Fluoride Gel, NPN#02149923, www.rosshealthcare.org, and it truly was pH neutral and didn't sting at all. It's made in Canada but also marketed in the USA. I think this might really help.

I can't get this product now that I live in England, and have had to drop back to Colgate Fluorigard Gel and to this day (nearly 1.5 years out) it stings somewhat.

As for the sores, well, as many will say on here, keep the faith, they will go away, eventually. For quite a while post treatment anything acidic would trigger "water blisters" in my mouth when my secondary salivary glands would try to squirt through the damaged mucosal skin layer inside my mouth. I couldn't eat even a cherry tomato for several months. But this doesn't happen at all now, and I had forgotten all about it.

Good luck!

-Seth

I stopped using my fluoride treatments for awhile when they hurt because I figured more irritation was less beneficial to the healing process than the positive to be gained in the long long.

Re telling him, you know him better than us but I personally would rather know that the vast majority of patients in similar treatments had their worse experience post Tx and it usually lasted appx 3 weeks than to keep guessing if this was normal and how much longer I had to go.

Thank you for the tip about a different type of fluoride. I will look it up as that is my job right? I totally agree that it is better to feed some information to my hubby than to have him guessing and worrying. I feel that I know about all of this thanks to you. Yes, if it were me I would be finding out how long things would take.

I will continue to talk to him in little bits. Every one in a while he will get a bit curious and then if I start to tell him he will say in an impatient tone, "do you know something that I don't know?". Um yes I do but he will only listen when he chooses to. I am a planner, as you all well know now, and so it would help me. I think that he feels like he cannot fight as well if he is worrying about how long things will take. I have to admit, he has really defied some of the odds and he wants to continue.

I will try to be diplomatic but I have to say that I do not want to be snapped at after all that we have been through.

He called his dentist and she said to take a break from the trays and fluoride because it is really an irritant. So we will continue.

hi again ellen...fwiw worth my dad is having the same issues with his flouride treatment, and it is making him miserable. i googled flouride and found your folder for ideas, his dr also said to back off trays til monday to allow healing. what a mess, he was having a decent week til this. i feel for you.