Oct 30 makes a year

thegirlfriend

Hello everyone,
I havent been on is quite a while. It got to be too much for me. No suggestions were working for my boyfriend in his recovery as far as food. He still does not eat solid foods. Oct 30 made 1 year that he finished his treatment. has had 3 or 4 follow ups,
where the dr has poked, prodded, stuck things in and out of his mouth, sinuses, or wherever there was an available hole from the neck up I guess, and has not found a hint of anything he has been thru. Dr says everything looks and feels great. He orig had stage 2 SCC of the jaw. Tumor was destroyed. he lost 70 lbs and has not gained any back due to the fact that he is living on protein shakes for the last 8 months. had the peg removed about that time ago. has the shakes at least 3 times a day. of course anyone who has ever drank those things just as a healthy person knows that they give you gas, or irregular bowel movements, just does a number on the digestive system. he has tried all of the suggestions here for foods and methods for recreating saliva, stimulating saliva, has about 5 seconds of taste if he does try to eat something. This hasnt changed much at all since treatment stopped. He doesnt have as many sores in his mouth now, nor does he have the thrush anymore. It has been an extremely extremely slow process. Very depressing for him and myself at times. Its so amazing how much eating is a social function, communicative action and not just a sustainer of health.

i did want anyone who is interested to know that he and i are still around and he continues to try to keep his mind busy and not think of his food situation. yes he is grateful to be alive and done with all of that treatment, but he would love to eat. he constantly hates when drs try to have him take a food stimulant. He has no trouble with the desire to want to eat. he is hungry and would love to eat. he just cant really swallow it. If he swigs it down with water, he can choke easily since his swallowing mechanism is a little different now. so no chugging fluid fast anymore. he does think that when he eats, the act of your mouth creating saliva to mix with the food, the runny saliva that is, is gone and so all that is there is the thick saliva that is in charge of coating the mouth and throat when you are ill to protect it. He thinks that saliva is trying to make up for what is not there now so he always has a really bad cotton mouth, all mucousy. Makes sense since your runny saliva helps with the very beginning of digestion. You know how your food starts to disappear and you cant always do the 29 chews for it? If he tries to eat solid, it doesnt break up and start to disappear so he can swallow it a bit at a time. Imagine just chewing and it never breaks down except maybe what your teeth do to it in chopping it up.

Thats where we are about now. I still see some familiar people, Hondo, Chefdaddy, sweetblood, and a few others. Hope your lives are constantly improving and that you continue to live as healthy human beings.....cancer free.

the girlfriend
Kathy

Pam M

Hi Again
Kathy,
Good to hear from you again - sorry you didn't have even more good news. Great that doc says he looks and feels great - sorry he can't eat. I finished tx in March, and can eat most things now. There are a few foods that I can chew for days, and that bugs me, too - I have to bite it down as small as I can, drink lots of water, and cross my fingers. No complaints here, though - I can eat plenty. Keep us updated - hope to hear more "looks good" reports.

frank10g

Pam M said:

Hi Again
Kathy,
Good to hear from you again - sorry you didn't have even more good news. Great that doc says he looks and feels great - sorry he can't eat. I finished tx in March, and can eat most things now. There are a few foods that I can chew for days, and that bugs me, too - I have to bite it down as small as I can, drink lots of water, and cross my fingers. No complaints here, though - I can eat plenty. Keep us updated - hope to hear more "looks good" reports.

more natural food
Hi Kathy,
Just want to give a little input on what he can eat. If he can drink protein shakes, he should be able to slowly drink liquid food, right? I like the idea to give him more natural diet. Maybe you could blend some brown rice porridge or mung beans in addition to shakes. Fruits and vegetable juices are great too. Start adding a little variety every day. My wife has experimented with everything during my recovery and I would love to share it with you, if you like.
Frank

Noellesmom

my husband
Kathy, in no way did my husband experience anything like your boyfriend when it comes to lack of saliva and reduced swallowing capacity or appetite or anything else you describe.

His oncologist did mention something she did not have to provide for Jim: apparently, there is a medication called Saligen that stimulates the salivary glands. I believe this would work if your salivary glands are stunned and not damaged beyond salvage. That may be reality for your boyfriend but I wanted to mention it, anyway, in case anyone else has experience with it.

I, too, would like to see him do something besides the protein shakes but I'm thinking y'all have tried the standard milkshakes, potato soup, etc. Protein shakes can be so hard on the kidneys, also, if that is all one consumes.

sweetblood22

Hi Kathy
Thanks for checking in and the update. I completely understand the frustration that he must be going through.
I have had a bit of a break through the last couple of months. I was able to get my tube removed. I am holding steady at 99lbs. Can't seem to crack that 100 lb barrier. I have hardly any saliva, since I had the left removed and the other fried with rads. I started to get off my peg when I bought my emulsifier and my chopper. I still have a pretty bad stricture, but I have slowly VERY slowly been able to add a few more foods to my diet. I still drink two protein drinks a day. I am able to eat eggs, and some angel hair pasta, and even toast with eggs and a ton of hollandaise ontop to choke it down. My tongue is still hurting a lot. I am out 18 months now. I so understand about the chewing and not having it break down in your mouth. Makes it so hard to swallow, especially with my stricture. Digestion. Starts in the mouth and without that saliva, well, it's not easy to eat. I can eat some veggies, put them through the chopper so that they are minced, then I make sure they are cooked soft, so I have less to chew and it's easier to swallow. I take miniscule bites and it takes me at least an hour to eat each meal. I have had to learn to keep eating cold food. I always had to have my food piping hot. No can do anymore. To me cold food is really unappetizing. I don't use water while I eat. I drink milk or a thick beverage while eating. It helps the food go down better thicker is easier to swallow. Water backs up and comes out my nose. I now can drink my beloved chai teas again by brewing them in milk. Drink Luke warm. Lol.

I tried the salgen but while it made the backs of my hands sweat, I had no increase in saliva. My doc said it works great when it works for some.

I am finally to the point where I can live with my limited food choices. I can deal with this. I was completely miserable and really did not want to exist if I could not eat. I realize that some people are able to make this adjustment and be greatful for survival and lead a great life, but I really struggled.


It's tough daily. I feel like I am either always eating/drinking or brushing my teeth. I have been feeling markedly better last two months. It's amazing what some normal food can do for a person mentally and physically.


FWIW at one year out I couldn't really eat solid food either and weighed 87lbs. It takes some of us longer to heal. At a year out I was survi ing on peg tube crap, mushy macaroni salad with avcocado and bananas. Don't want any of those foods for a while. I don't even really like avocados and bananas. But I could swallow them and they didn't burn my mouth.

I hope he keeps trying to eat and swallow new things. It really takes a lot of work! Wishing you both only the very best.

Blessings,

sweets