Hi all,
We need help.

It has now been 12 weeks since he finished the treatment radiation.
A few weeks back he was fine, his taste buds were getting better and his mouth was quite moist, all seemed good and we thought we had turned a corner.
But 4 weeks ago, the dryness came back, and for the last 2 days the horrible salty taste to food has come back. the consultants seem to dismiss it and say he caught cold and it will come back. However it seems to be getting worse not better.
He is also getting terrible pains in the neck in the scar area. The muscles seem incredibly tense to the touch. It is odd, the outside skin is numb, so if I touch him he can't feel it, but under the skin it hurts. The pain makes lean to one side and walk crooked.
I have read about the tast and saliva loss after treatment, but not that it comes back then goes away even worse so long after treatment.
Has anyone experienced all of this?
Thanks
Cecilia

Cecilia,

First off we are not Oral Cancer doctors who can answer these questions so you really need to be talking to them. With that said please understand that each of us can respond differently to the same Tx and the recovery is a long and sometimes bumpy road. One day you think you've turned the corner and the next you feel worse than before. Our recoveries can easily take 2 years so patience is important. Again I'm not saying ignore his patterns and you need to talk to his doctors but it may just be his unique way of recovering.

As David notes, it is a hilly ride through recovery and my doctors told me to expect highs and lows along the way. There were definitely times during the first several months post treatment that I felt I had digressed only to rebound whether it was taste or the dryness. I am now a year out since last treatment and doing darn good but is it ( taste, moisture & neck ) like is was before? Heck no. Based on what others have said on this site Cecilia, I am going to give it 18 to 24 months before I say, "well this is the new norm for life". I also saw my doctors every 4 to 6 weeks following treatment and assume Martin is as well. Gave me the opportunity to ask many questions about healing and reassurance that there was nothing else going on.

Thanks. The doctors are not concerned so I suppose all is healing the way it should. it's just nice to the opinions from patients as well.

I never had radiation but had extensive surgery...I have that numb feeling on top but painful inside...I consider it like a freezing feeling...I seem to be getting more and more feeling back...I am only four months since surgery though have been told another 3-6 months yet before normal...I am also diabetic which hinders the healing process...I don't know if this helps but we are all I think in our own way trying to find out what is normal and what isn't and I keep trying to pry into my brain that there are limited normal healing roads as every person's body reacts different to treatment...just because it isn't normal doesn't mean it is bad but most doctors have seen most of the variables and can differentiate between something and nothing...

Cecilia, The dryness is probably normal "get used to it" but I think I can offer this for you:

I had/have exactly the same kind of pain you describe. Get to the doctor and ask for Diazepam. For me when this pain happens (it is a muscle spasm) 4mg of Diazepam and one 200mg Ibuprofen takes care of it within 30 minutes. The relief will be dramatic! I have this problem about 3 days out of 30. It continues even after 7 years but with less frequency. As far as anyone can say this is a result of the radiation.

Cecilia

The road to recovery is more like a labyrinth than a super highway. Just like when you turn a corner in a maze, you can find yourself heading back in the direction you started from, taste and saliva can (and in my case did) fluctuate wildly. What was most frustrating to my caregiver wife was similar to what you are enduring. At about 2 months after radiation over, I could eat almost anything, including steak, then a month later I was back to soups and soft foods and couldn't taste anything again. Foods she had prepared were now inedible for me. I tried Zinc tablets on my doctor's advice to restart the taste buds, but it did not help me. You may want to at least discuss that option with his doctors. It was not until a full year had passed after the radiation before the seesawing of saliva and taste stopped. It is much better now, but nowhere near pre-cancer. One last suggestion: go with him to his doctor's appointments to make sure these complaints are heard and evaluated by the doctors and take notes on their responses. I was amazed at what my wife's notes said about doctor's advice compared to what I had thought I heard at the follow ups. Good luck.

I remember things going from metallic to salty, and wondering if anything approaching normal would ever return. Even water tasted horridly salty. I'm not sure how long it took to get normal taste back - these things seem to just happen without us realizing it! Take heart - it will improve.

Donna

Cecilia:

I am no expert and only 8 1/2 weeks out of radiation. But for what it is worth, I heartily agree with all who said the recovery process is a laberynth. I am not yet back to eating, and have to literally retrain myself to swallow. But the saliva problem is a roller coaster. And that coupled with the back of the throat phlegm is going to drive me insane.

So I would not expect clear sailing for some time.

Above all, as stated earlier in one post, make sure you attend each meeting with the doctors. I am astounded at what I hear compared to the notes my wife and caregiver takes of the meetings. And she has been right all the time.

I think the phlegm is given to us to test our will power. It's been a long time and that stuff got to me in church this morning. I was coughing gurgling water, which I always have with me, and coughing like some little chipmunk that just got smacked by an auto.