Cardboard taste ---soo early on- any advise

Daddisgrl said:

Getting through this is a
Getting through this is a learning experience. You can complain to the doctors & some just don't listen. A huge problem was the mucus; but we were never told what he could take until around the end of treatment; they suggested Mucinex; which helped a lot.

There is also artificial saliva they can give; I don't know why they don't. Maybe Marine knows the name; you mix it with water & it's like a gargle. My hub did not have that; they gave him Evoxac towards the end; then when insurance maxed out; they gave Salagen. I don't know why they make patients suffer with the dry mouth when there are medications they can prescribe.

The Actiq pops were a God send. I learned about it from Brett Hudson (Kate Hudson's uncle- Goldie Hawn's ex-brother in law) He has a really good blog about his journey; which I was following before my hub was diagnosed. I started asking for the Actiq pops when he had his main surgery- no one would give them. Of course liquid perc or tablets- then during radiation Fentinyl patches were added that made him sick after 4 hours max. I kept begging for the pops because of what Brett said; how that was the only thing that seemed to coat his mouth/throat to get rid of the pain- nothing else really touched it & with something like the patch- why wear it if you do not need to? So the rad oncologist finally prescribed them when there was 2 weeks left & I could scream that they make people suffer when there is a pain medication that will work better for this type of treatment.

We had to special order them from CVS; took a few days to get in- we had 3 boxes I think. My hub would put it in his mouth for a few minutes; then take it out. He said he really didn't need to eat the whole thing. 1 pop lasted him almost the whole day; he would have a 2nd at bedtime.

If your tongue is sticking to the roof of your mouth; put a dab of Vaseline where it sticks. One of the members at another forum asked the manufacturer & yes; it's safe to use. You just need a small dab. Then there are biotene products- I usually buy them from Walgreens because they are the only place that has buy 1 get 1 1/2 off. They have a mouth spray; dots you put in your mouth; toothpaste & mouthwash.

Are you using trays with fluoride? If so; we found that the fruit flavored does not burn or dry out the mouth like the mint does.

We found the magic mouthwash made his mouth worst; he used the baking soda a lot more. The Lidocaine was very drying & left a bad taste in his mouth.

Keep an eye on the mouth sores when they start. They let my hub get too far before treating it. He has Lupus; & ended up being admitted with morphine for 4 days which is another story because morphine makes people sick; the last thing you want is to vomit.

Make sure you stay hydrated. 6 to 8 bottles of water per day.
The feeding tube can be a good thing but it can be bad. My hub was not going to use it at all but had such a hard time eating that it was good he had the peg. I wonder if they gave him the actiq pops in the beginning if he wouldn't have used the peg.

He was able to sit in jacuzzi & shower. We didn't ask about swimming.

Have they given you ativan or something for nerves? If not; ask for something.

Good luck.

martyD said:

I recently went thru 7 weeks
I recently went thru 7 weeks of radiation and it was no walk around the park. I have squamous cell carcinoma of the head and neck. Treatable but not curable. The treatment itself was OK. ou will get your taste buds back I am happy to say. Mine have almost all come back. Not a good way to loose weight. I lost over 20# and have gained 4 back.
Hang in there.
Bless you