can you help me help my friend-neck radiation

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HabsHockeyFan
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Date Joined Jan 2006
Total Posts : 3130
   Posted 10/29/2009 10:38 AM (GMT -7)   
My friend is going through radiation to her neck.  She is suffering horribly with mouth sores and taste-bad.  Is there a good site for me to find assistance on food supplements
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


vitaka
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Date Joined Jun 2006
Total Posts : 887
   Posted 10/29/2009 12:25 PM (GMT -7)   
Has she had her bloodwork run to see if she has any deficiencies due to the radiation? A lot of deficiencies can cause mouth sores. For example, I take folic acid daily to reduce the chance of mouth sores from my methotrexate.
29f, PhD student, originally diagnosed with Crohn's in 2/06
10/09: Prometheus test shows results consistent with UC
10/12/09: beginning treatment for inflammatory arthritis
Currently taking: 7.5mg methotrexate weekly (pills), 2g Pentasa, tapering from 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics, folic acid


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 10/29/2009 1:46 PM (GMT -7)   
Here's a link that is selling a skin cream for Radiation Fibrosis, but also lists a number of things you can take to reduce other radiation side effects:
http://www.radiationtherapysideeffects.com/

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 10/30/2009 6:05 AM (GMT -7)   
I know I put this up a lot, but it just is so good for anyone who is sick. Try to get this book. "Cooking Well for the Unwell" by Eillen Behan. She has a couple of sections in it that would be very helpful. One is about making each bite that the patient takes as nutritious and calorie dense as possible. And another is about soft easy to swallow foods (Crohnie good). She has recipes and the ones I have tried are quite tasty. The book is out of print, but used copies are available on Amazon for just a few dollars. It is probably one of the books I refer back to the most when I am sick.

I was just a teen when my grandmother had throat cancer but I remember how miserable she was and how hard it was for my mom to find things that she could eat. As far as the bad taste though, I would go for really strong flavors, but try to make it into a texture that would be soothing. Like pureeing things and keeping them at a luke warm, not hot.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 10/30/2009 7:06 AM (GMT -7)   
slushies help with my mouth sores (I make a mean strawberry gatorade slushie) at least help with the pain, jello can also be soothing, but do not let it set up.
Oral ladocaine (but it tastes aweful)
Plus the sores make you sick to your stomach so zofran is good. Queasy pops too.
Unfortunately I did lose most of my sense of taste and smell, and I still have the metallic taste sometimes.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


HabsHockeyFan
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Date Joined Jan 2006
Total Posts : 3130
   Posted 10/30/2009 11:06 AM (GMT -7)   
Thanks for the food recommendations guys! At this point she is saying that she would rather everything was just over and she doesn't mean just the radiation. unfortunately, fuit flavors and juices are burning in her throat. The only thing she is getting down is vanilla ice cream shakes made with vanilla Ensure. Any other flavors are making her nauseous.
Docs have told her if she loses much more weight they want to put in a feeding tube. She is so opposed to that and scared. i tried to convince that it would help with the fatigue and the irritation of her throat. She has just given up and doesn't want the tube. This lady did not go to a doctor for years so a tube is way out of her perception.
MMMNAVY..I will recommend she ask for Oral lidocaine...she won't likely taste it. As of today, they had to switch her to a liquid pain med as the pills were getting stuck in her throat.

I feel like I am losing my Mom all over again....this lady was my local Mom when I moved here
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/30/2009 1:15 PM (GMT -7)   
I was looking through the book I mentioned and one of the things in it is to add powdered milk to whole milk to boost the calories and protein. This could probably be done to the Ensure too. It might help her add a bit of weight and hold off on the tube feedings. I'm heading out for a bit, but I'll try to look through the book some more tonight and see if I can find anything else that might be a quick easy idea for adding some calories.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/31/2009 1:37 PM (GMT -7)   
I had a chance to look through for some more ideas.

One of the chapters is entitled "When Every Calorie Counts", certainly something all of us Crohnies can relate to. One thing she goes over is eating 100 calories an hour. The way she explains it really isn't all that hard. 1/2 C of cereal w/ whole milk, 4 oz of juice and a graham cracker, 1/2 C of Cream of Veg Soup, 1 Sq of Lemon Cake, 1 T of Peanut Butter, 1 oz of Hard Cheese, 1 Large Egg, 1 Banana, 6 oz Milk, 1 Biscuit. If you look at the things that your friend likes and think about the most caloric you might be able to plan out a few snacks that really are calorie smart for her. Then add in a few high calorie meals and maybe you can hold off on that tube feeding. After my Mom's last resection, she had short bowel syndrome, and couldn't keep weight on, but she loved homemade fudge. She ate at least 2lbs a week. It was the only thing that worked to keep any weight on her. It may not have been the healthiest snack, but it did the trick. So think outside the box to get your friend over this.

Some other ideas: Drinking through a straw can help avoid the mouth sores. There are special straws available that hold liquid so you don't have to waste energy sucking up air (Enrichments for Better Living Catalogue, PO Box 579 145 Power Dr. Hinsdale, IL 60521 1-800-323-5547) Also, spray "saliva", or just water, may be helpful as she is eating to moisten her food. Cream of Coconut has lots of calories, make a drink/smoothie with this and the Ensure, and maybe a bit of fruit. Add a small bottle of baby food, which ever one is appropriate, beef, chicken, turkey, to soup to boost the calories and protein content. Puree canned soup and serve with a straw, avoiding the mouth sores. Or better yet, homemade soup, then puree.

Have her try Shrimp. It is an excellent protein and very soft and easy to digest. The same with a soft white fish. Rice pudding and Custards could both be made with Ensure or whole milk.

Peanut butter smoothie: Reese's in a glass

3T Smooth Peanut Butter
1 C Vanilla Ice Cream
1/4 C Dry Milk Powder
1/2 C Milk
1 T Choc Syrup

Combine all in a blender and puree, serve immediately. 340 calories per serving. makes 2 cups.

When sweet things become monotonous:

Curry Smoothie:

1 Apple, peeled and chopped
1 clove garlic, minced
1T apple juice
1/4 t curry powder
1C buttermilk or plain whole milk yogurt

In saucepan, over low heat combine apple, garlic, and apple juice. Cook until apple and garlic are soft, about 5 minutes. Stir in curry powder. Transfer to blender, add buttermilk and puree until smooth. Reheat in microwave if desired, but do not let boil.

Keep us posted and I hope these ideas help.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/31/2009 1:45 PM (GMT -7)   
I went without solid food for about a year...Ice cream milkshake (use real cream/whole milk for milk, and creamy pb really helped)
I actually meant the clear flavored gatorade, not juice (things that are clear generally do not burn as much).
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 11/2/2009 10:22 AM (GMT -7)   
Thanks soooo much Zanne and Navy....I wish HW had a support forum for her, but you guys are even better! The peanut butter may be an idea I can get her to do. I will also push the gatorade idea. I mentioned baby foods to her already, but never thought to add them to something else.
I am feeling oddly good right now (despite some stress and lack of taking my meds).. It just hurts to watch her go through this so stubbornly
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

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