My brother finished radiation/chemo end of Feb. He started to eat and has lost all desire..doesn't even try right now. Doctor siad, he has to push through and eat. He has lost all saliva glands. Doctor said they may regenerate. Can anyone offer any history or guidance that I can share with my brother please.
Thank you

I lost interest too . . . but that is because everything tasted like paper. But I ate anyway and oddly there were periodic flashes of flavor. It became a food lottery, as it were.

He has to eat, though. Find anything. But he just needs to eat.

As for the saliva, it goes during treatment. For me, it was an ever-present bottle of water and Salagen. I don't have the water bottle, but I still take the salagen. I hope that when the slagen ends, I will be reaonably functional in that area. It is getting better, though!

Others will be able to point to other products and strategies for both problems.

My best to you and your brother.

Tim

Oh, and oddly enough, sipping room temperature coffee (black) seems to help. I drink the same cup all day (almost) it is does seem to spur a bit of saliva production.

Laurie-
I took most of my nurishment through a peg tube but the one thing that actually tasted great and would feel good in the mouth were Starbucks frappichinos! Full of fat and probably not too healthy but it did add calories and coated the mouth at the same time. Fruit smoothies also went down rather nicely. Can't have them now as I've have gained back all the 45 pounds I lost!!There comes a time when you just have to treat yourself! - Kris

If he still has his peg, use it for nutrition. He's in for a long haul without taste, saliva, etc. I have been out of treatment for over a year and still no saliva and I am dysphagic, I still use my peg for all liquids. I can eat viscous things with the aid of applesauce.
He has to realize that taste, saliva may not return for quite a while, you adapt anyway you can.
Darrell

laurie chester i lost all my salivia glands also im now a survivor of five years now went thru a radical neck surgery and radition,with a tube in my stomach for a long time eating cream of wheat.i now go to alot of buffets and things like that i can allways find something to eat there.i know how your brother feels.that was my main issue.its like learning to eat all over agin.youll neaver eat like you use to but i was 98 pounds after radition now im holding a good 115 pounds.tell your brother he has to keep trying.he can eat he just doesent know it yet

Laurie, I needed a water bottle with me at all times for the first few months. then one day I forgot it and realized I didn't need it. I sucked on a lot of sugarless candy which seemed to stimulate the salivary glands. It is a slow process. I still remember the first day I could lick an envelope to seal it. Tim is so right about the food lottery. Taste comes back in spurts. I used to take one bite of something and enjoy it immensely, only to have the second bite be absolutely tasteless. In my case, salt came back first, and I ate cases of chicken noodle soup (which I cannot even look at today). Sweet is the last taste to return. The keys here are Time and Patience. He needs to get nutrition in him one way or another, and he also needs to understand that the situation will slowly improve. In a year I went from very, very dry to nearly 100%, so he should not give up hope.

Note to Tim: You are doing spectacularly well for where you are. If my experience is any guide, by mid summer you will be 100% better saliva wise. Hang in there!

Thank you everyone for your responses about Saliva. I will have you know that today, Mother's Day, my brother, mother and nephew (brother's son) and I went outfor breakfast. Brother ate 2 eggs, pancakes and two glasses water(sip...sip) I was so happy.

I have someother concerns please if anyone wants to help me understand more.

My brother's breath is terrible. Not exactly the same as when the tumor was growing...but bad.

He jsut got scoped and had a PET scan. PET scan was clear. Scope showed dysplasia but the Doc wants to rescope in 2 months. Says it may not be as it shows cause there is still swelling. But considering his breath is bad I get so worried on everything. And he is so very thin now 169 from 200.

Thanks everyone

LAurie

Laurie,

Breath problems are among the unfortunate byproducts of reduced saliva. Following radiation, it's essential to get enough liquid intake to try to fight the chronic dryness. In addition to lots of water, I also use sugarless gum (I always hated gum-chewing before, but I find it helps keep the moisture going), and I use the Biotene mouthwash and gel quite frequently.

Cathy

Hi Laurie; A dry mouth and altered acid base balance can turn our mouth into quite a garden (not the nice kind.) Frequent swishes with a soda saline solution...every two hours during the early weeks and of the use of the Biotene products are very helpful.
I would be tempted to have the doc look at his mouth as he may have a fungal infection tht can be quickly and easily treated.
Dental hygiene is paramount. With no saliva to swirl away the trapped foods things can easily get lodged between teeth. Flossing and brushing after every meal have become part of my routine.
Some of us have taken to "power tools" like electric toothbrushes and water-pics and for the most part I think they are really helpful. I am determined to keep my teeth so I am highly motivated.
Ten months post rads I have a tiny amount of saliva...not enough to make a significant difference in eating. It seems like we all have unique reactions and recovery times.
Hope your brother has a speedy return to comfort.
All the best,
Fran