Dear All
if I may ask...
is there any info here (links) that you know of without too much trouble to search for..or words of advice from experience
m husband is 8 weeks out of treatment ( cisplatin 7 weeks and 35 Rad).for SCC tonsillar HPV16.

we went from all taste returning with some good amount of salivary function or so it seemed...
he would get mucous salivary blisters with eating and sweat ( parotids) but had no pain on his tongue, soreness of his throat to eat ( French toast, meatballs, mashed potato.. he was doing amazingly well)
till
now, ..... dry mouth, burning tongue, sores on the inside of his lips and reduced taste and losing desire to eat.
he is so despondent after such a hopeful place two weeks ago.Such a HUGE setback for him/us. he was preparing to have his PEG removed in about 6 weeks prior to this setback ..that is how great he was doing. Gained weight and everything..

he was on gabapentin for tongue zingers but since it has a small % of dry mouth SE.. he took himself off it.
He is using xylitabs, gel, spray, aloe, coconut oil ( those have relieved some of the dry mouth and irritations on his lips) ,,,he is drinking water, sipping, and also papaya ...all with some slight relief.
Ironically, he had a PT apt to learn about lymphedema ( he didn't seem to have any ...though the RO thought he could benefit) as soon as he started doing the massages, his left cheek blew up and so did his salivary gland on L side... so much so he had to use warm compresses for a week now.---with a good bit of improvement in the swelling)

we are baffled how he can go from salivary function and such improvement to such a dramatic change with dry mouth and so much more discomfort)

but now even eating a banana causes a sore throat.,


sigh....such a set back.

he is scheduled and was seen by an acupuncturist and we have a f/u apt this week with M.O.

but...
for the first time... in months..I, myself am feeling so heavy of heart... before it was getting him through the treatment and then it was.. amazing progress post treatment with so much hope...
now,., such disappointment for him.--- for us.

thank you!!

The gabapentin should not be what caused your husbands dry mouth. The dry mouth is part of the recovery process. First after finishing rads, patients have that awful thick gunky mucous. Then seemingly overnight the gunky mucous disappears and the dry mouth phase begins. This can cause all kinds of other problems for patients. To me it sounds like your husband should still be doing the cup of warm water with 1 tsp salt and 1 tsp baking soda mixture rinses at least 3 or 4 times a day. This will help stabilize the ph balance in his mouth which should help with the other side effects he's having. The dry mouth can also cause thrush which can be very painful and sometimes linger on for days/weeks.

If he is in pain then that is only making everything else even worse. Make sure any of your husbands pain is managed, discuss this in detail with his doc.

Your husband may need to continue using magic mouthwash to enable him to eat easier.

What you both are going thru is why the recovery phase can be so challenging. After being able to successfully eat a meal it should help to boost his moral and give him much needed hope. I feel so sad reading what you both are going thru. It sounds like you both could use a break. Nobody should have to endure any of this without knowing he will soon be well again.

Im not sure where you are located but maybe if the weather is nice, your husband could benefit from being outside. If he could see some progress in his recovery it could go a long way in helping him to mentally feel better. Im sure he doesnt feel very well but if he could just try to start taking short walks and slowly increase the distance he could then see measurable progress. For example, he can only walk out to the road to get the mail. Then after a couple days, he walks out to the corner, a few more days later he is able to walk around the block and so on. Plus... another benefit would be you could have a couple minutes a day to clear your head.

In time everything really will get better, it just takes way more time than any of us like. At 8 weeks post rads, your husband will definitely still make many improvements. The dry mouth affects all of us who have gone thru rads. It takes a very long time to see this get better. Some patients see improvements in their dry mouth even at 2 years post rads. We used to call it the water bottle carrying phase. To recover, pay attention to what is controllable.... his intake. By focusing on intake you can make sure your husband hits his daily minimums so he has the best chance of making his recovery as easy as possible.

Hang in there!!!

(((((HUGS))))))

I am inclined to think that the sores crop up in different locations as the radiation continues to work. Using the magic mouthwash consistently as Christine suggested is a good strategy, he will have to use it once every three or four hours, not just before he eats.

At this point post radiation, I went for walks with my husband in the local park. We would aim for a park bench and then would sit down and rest. Then we would move on after some rest or go back home. The fatigue at this stage was a shock to my husband. He was a big man and couldn't understand how easily he tired. That, rather than the discomfort, was what bothered him more. If you do for a walk, maybe take a scarf with you. John found the cooler air at this time of the year something that bothered him and he had to have his mouth covered as he was walking.

One thing you might consider trying is manuka honey which is supposed to help with recovery. John didn't use it at this point because he couldn't swallow, but later, when he was receiving esophageal dilatations, he used it quite a bit and it seemed to help him to heal. I know there is some uncertainty about this but if it helps your husband to feel better, it might be worth a try. If you search under "manuka honey" you will be able to read more about the experience of other forum members with it.

At this point, it is the feeling that one is getting stuck when one is expecting improvement after treatment that is so frustrating. I can totally relate to how you are feeling. It takes time and I know it is difficult to stay positive when you are probably stressed out from the weeks of treatment. You have been through a tough time as case manager, caregiver and wife. If you can find someone to stay with your husband for a few hours, you may want to give yourself a little break, like going to Starbucks for a coffee and doing some window shopping. It is important for your own health. I used to get up an hour before my husband so I had that time to eat a leisurely breakfast and have a cup of tea before I was thrown back into the busy day. It was time that was so important to me. Maybe doing something like that will help you too.

thank you Christine
he was still doing the salt and baking soda rinses 3x day but he has ceased with those as he is rinsing with aloe, orasooth and plain water.
wouldn't the sodium create more mouth dryness?

alas, we are just seeing signs of Spring so he has gone for a short walk. ..
we try to get out it bit.... winter here has been too long.

as for magic mouthwash.oh gosh.......... that was BIG NO in treatment ..one attempt and he said things he normally doesn't say. never went back to it.

he now also is refusing pain meds ..
he will take analgesics though.

thanks for the HUGS...
so much
it is a tough place.

I am now also getting very concerned about brachial plexopathy... he is having almost a burning/nerve ending sensation of his upper and lower arms.... no tingling in hands, or fingers. he is only 8 weeks out... so this has me worried that he is experiencing this.
is it from RAD to the neck. I am reading a lot about RIBP.......... very very discouraging.


or is it from cisplatin.?

((((((((((( thank you)))))))))))))))))))) for your help and support

gmcraft ((((((((((( thank you)))))))))))))))))0
the honey is a great reminder..

I do believe in the properties of honey..
and getting outside.
it is amazing how taking a walk can be so tiring.
he is at work daily now...
so that takes a bit out of him too.


as for taking a break....... ohhhhhhhh... I am thinking of ordering a yoga dvd, but now that the weather is better... I will get in the kayak soon.. that will be some escape for me..( I volunteer as a loon watch monitor at a nearby pond).

thank you for your support and kindness

You're welcome! Thats what we are here for... to help each other get thru some rough times.

From what Ive seen others go thru, the chemo is the culprit behind your husbands arm problems. If he would give the gabapentin (neurontin) another chance it should take care of this. I know the gabapentin did not cause his dry mouth... we ALL suffer from dry mouth after having rads. I know its horrible, I lived thru it too. I wish I could do something to fix this I feel very bad for any patient and caregiver in your situation. He has already been thru enough (u too) that all this must be overwhelming. Plus swallowing probably hurts like heck. I remember I felt like my throat was full of razor blades whenever I tried to swallow after the gunky mucous phase. In time if your husband is meeting his daily goals of at least 2500 calories and 48-64 oz of water he will begin to make progress.

Tomorrows another day, I hope its an easier one than today for you both.

As mentioned, many conditions, infections, medications or combination of these can cause mouth ulcers, sore throat, taste change, and pain.

When my kidney function goes down, I notice taste changes, and in some cases, it can cause mouth ulcers, sore throat, medications like Gabapentin, which I take, as well as pain Meds, can cause taste changes, throat swelling. Antibiotics too can cause taste changes, and conditions like Thrush, a fungal infection, can cause taste changes, ulcers, and pain, but this sometimes needs to be treated with Antifungals, and likewise with a viral infection, like herpes simplex virus, with an antiviral, and mucocitis can cause ulcers to become bacterial infections, and need to be treated with antibiotics. Even dehydration contributes, and has similar symptoms, so it's good he's seeing his doctor who can help, and perform any necessary tests such as blood test, culture test.

Btw, I still carry a water bottle with me everywhere I go.

Good luck

Mrs. W, I received a lot of kindness from members of this forum when my husband was in treatment for close to four years. Staying on the forum is my way of paying it forward. Post whenever you want, even if to just vent. We hear you and we understand what you are going through.

thank you Paul

it helps to know how much can alter taste now...
I was not aware how sensitive that is post treatment. At least it is something I can share with him so he doesn't get too discouraged about that.

take care.
thank you