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

ok thank you Eric. Ill check into that. I appreciate your advise.
have a good day
Patty

I used glaxal base... it's thick but rubs in well and is not greasy. I used to used it right after radiation and before bed.


good luck.

I was given Beta-Val prescription cream. Dont rub it in, Pat it on and let it soak in. Ask the doc for prescription cream for your mom.

Patty i while going through radiation i used to make smoothies with fruit, full cream milk and 2-3 tablespoons of full cream milk powder. I'd have one every day. This is good and nutritious and there is no sugar so good for the teeth too.

Oatmeal cooked in full cream milk for about 20mins on low heat and blended was my daily breakfast and sometimes dinner too - for 3 months. This is also healthy.

Patty, I send courage to you both. Everyone has given you marvelous advice.

During RT I used Miaderm, which helped to a point. When things got really bad toward the end I went to Silver Sulfadiazine cream. Great stuff and I recommend asking about it.

Please keep us posted. Your mother is lucky to have you!

thank you all for all of your wonderful & helpful advise. my mom is now also on OCF and has been reading along.. so I thank you! so glad that we all have each other! blessings to you all! patty

I used Biafine and highly recommend it. It is also supposed to help prevent the burn.

Take care,
Eileen

Hi there I am new to this forum but I think I might can give you some information that will be helpful. I had a maxillectomy on my left side because of adnoid cystic carcinoma. I had more done a little more intailed. Part of my orbital bone and the cancer was wrapped around one of the nerves to my eye. But I did have 7 1/2 weeks of radiation. I was told about the dry mouth also. I was told the secret to dry mouth was to carry a bottle of water around with me and sip it and during the night. I have had no problems with dry mouth except for at night because my mouth isn't closed all the way. Do not sleep under a ceiling fan or have a fan blowing on you because this makes it worse. That was hard for me to get used to. lol The radiation was not bad. No pain. I did make a cd of my favorites and they let me play it during the treatment. Helped to make me not so nervous at the beginning. Two weeks after treatment I had really bad sores on my tongue which made it hard to eat or drink. A friend of mine to me to try Colgate Orabase. It's a white creme and it is a wonder drug. Over the counter. I don't know what I would have done without it. Let me know if I can be of help to you. God bless you and you will be a great comfort and help to your Mom. Tell her I said one day at a time.

HI thank you for the information, I will pass it along to my mom. they told her she would have no salivary glads left after the radiation. did you try using the manuka honey? i have read others used it and it helps but my moms radiologist said not to use it because its an antioxidant..

Hi there..
With regards to the honey it has antioxidant properties, however less than two percent of the honey's nutritional properties is comprised of vitamins and minerals, none of which are the vitamins the cancer center warns against taking as a supliment vitamin, c, e, and A - and selenium - this was from a pamphlet that my radiation department handed out. The honey is 80% sugar, 18 % water and two percent vitamins like, thiamine, niacin, etc.. No vitamin, a,c,e or selenium. Which are the anti oxidants they tell you not to take.
My dr. Approved it - and there is a cancer hospital doing a three year trial on use of the honey in Head and neck cancer patients and prevention of mouth sores. But I totally understand your dr.s concern. And your reluctance.do what he says. Best of luck to you and your mom... Hope she gets through this all and begins to feel better.

thank you for all the info I will pass it along to my mom. bless you! Patty