HI, Im new to this web site, my mom has Polymorhous low grade adenocarcinoma, she had her surgery one month ago, they removed three teeth and a large part of her hard and soft palatae.She also had some glands removed from her neck. she starts radiation on her nose and her neck in about a week. they said she will have no salivary glands left after the radiation (30 days) anyone out there have any words of wisdom on how this will go? the dr said she will have to spray her throat for the rest of her life. my heart breaks for my mom. its been so hard seeing her go through this horrible cancer. and a total emotional roller coaster for myself and my family. I would appreicate any info. thank you Patty

You mom will get through it with lots of support and love - radiation is hard - but doable! She should definitely take in as many calories now as she can - drink lots of fluids- too - and try to maintain her swallowing during treatment even if she's using a peg - i used cream religiously on the radiated areas - it helps with the burned skin - the baking soda water rinse is something I carried with me all the time. I rinsed my mouth frequently as it helps heal - assuming she ends up with mouth sores. (depends on where they radiate). Stop antioxidants if she's she's taking them. She will be fatigued - and she should be okay up to week 4 - after that it gets harder - and it's worse the two weeks following rads - it's cumulative. Good luck - take care and wish your mom the best!

Patty,

Most of us that have had rads deal with xerostomia (dry mouth), myself I only have 1 working salivary gland but the right side of my face is paralyzed so my mouth drops and is continuously open further increasing the issue.

Using the mouth spray (I use biotene) helps as does continuously drinking liquid. You get used to it. What happens with severely dry mouth is your teeth will deteriorate rather quickly and dental work after rads gets tricky. The worst part for me is having to eat all the yogurt for probiotics (I know I can take the pills but I like that less) as I'm not a fan.

Keep you chin up and use these forums for support, we're here for you and your mom.

Eric

Eric & Cheryl
thank you for your words of wisdom and advise, I know its going to hard for mom. Mom has lost alot of weight and is just now starting to eat alittle better. (she had surgery 4 weeks ago today) any good ideas on how to fatten her up? we have tried ensure, and the doctor told her to eat ice cream, but there has to be something out there that is more nutrisious and more fattening. I've heard you can not do the protein drinks because it can hurt the kidneys... but we are having a hard time finding good fattening easy to swallow foods. thank you! Patty

Patty here is a list of easy to eat foods that may help your mother.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Many members will also drink Carnation Very High Calorie nutritional drink. It is sold in cases thru the Amazon link on the forum pages. If I remember correctly, a case of 24 runs about $46 which includes S&H. In some areas a local Walgreens or other drug store may order it and have it in stock upon request. This wasnt an option where I live and I found it very easy to order it online.

I mix whey protein powder and coconut milk w my ensure as I have issues with gaining / maintaining my weight. I would ask her Dr about using protein supplements as the body needs protein to help recover. Coconut milk is high in good fats and amino acids that help build and maintain muscle

Hey here - I know nutrition is hard! Lessee...

Cheeses - nuts - lentils - chick peas - high in protein - and good fats - particularly the nuts (I know nuts are hard to eat but ground up - put on top of yogurts etc.... Yogurts - kefir - ice cream is good - if you are worried about healthfulness try organic ice cream - higher fat milk. Lean meats in soups - small small soft pieces with - lots of legumes. If she cant handle the chunks toss it in a blender so its drinkable. I drank a lot of high calorie ensure/boost. It has high calories and as much or more protein than the high protein version of the same drinks. I am the same as you - I needed to maintain calories and protein (I'm a vegetarian) but I didn't want to gorge myself on junk food - that just creates a mess of your body - and it's already having trouble. Fish too - some are higher in fat than Others - salmon for instance and fish is usually easier to eat - or you could do a nice fish chowder.

There's a website here somewhere owned by a person on a permanent peg - he has healthful nutritious recipes that can be drunk. His name is DYM look him up he can link you to the website. good luck with your mom... Take care

wow YOU GUYS ARE AMAZING! I am so glad I have found this web site and this great bunch of folks! thank you all so much for all of this fantastic info! I am writing it all down and I will pass it on to my mom. excellent info! again thank you so much! I am so glad to have this support group. you are all wonderful!
thank you
Patty

ok I have another question, my mom starts radiation monday, on her nose and on her neck, what is best to use if she burns? I live in NC and folks have told me to have her use Bag Balm then I have heard pure aloe and yet also Biafine cream? I would appreciate any info on what some of you have used and feel is the best product. Ive also heard some oils can make the radiation worse?

Your mom.should never have any creams or ointments on when she actually is on the table getting radiated. Afterwards I used Jason cream