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EMU Oil used to prevent "sunburn" effect

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I am an Az. HNC survivor and thanks to many here on these boards and in my local support group I made it through 35 IMRT's and 7 Cisplatin Chemos back in Sept-Oct 2007. I recently had my first post-treatment PET/CT at 11 weeks out which came back very good with only one minor shadow of glucose uptake at 2.9 which the Docs say is most likely inflammation due to the radiation. ANYWAY, as a Godsend through my treatments I found 2 products that really made a difference. 1)100% pure Emu oil (apply liberally and often but not just before treatment) and 2) Biotene mouthwash (I used it everytime I walked past the bathroom)Of course frequent brushing made a huge difference in oral health. Thanks to these two tips I did not have any burn and mouth sores were kept to a very manageable minimum. Check them out if you care to. I am a very happy HNC Survivor, getting better everyday. As I have been told by many of you, what worked for me may not for you AND MOST IMPORTANT, discuss these tips with your Docs. Be well...........JK

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

glad you had a good experience. thanks for the tips! do you have a peg tube or are you eating on your own now?

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I was very fortunate in that my Rad Oncol insisted I have the PEG placed before I needed it. Sure enough when I needed it I had it and it saved my life I think. I only lost 10 pounds during treatment and experienced far less dehydration than may be common. I had the PEG out in mid-Dec which was about 6 weeks post-treatment. Since then I have intentionally lost another 10 pounds at 1 pound per week (with Doc's permission) because I went in to treatments about 25 pounds overweight. I am now feeling great at a 35 year low weight.

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

how and what are you eating? i am 7 1/2 months out and still have my peg tube. just eating bean soups and moist things with gravy etc. i have virtually no saliva. do you have saliva?

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I am sorry that you are progressing a bit slower than I. Perhaps you had more surgery or more extensivve treatments. There are so many variable factors it is impossible to compare any two people's progress with any reliability.

I am able to eat most things except spicy. I love a hot salsa, peppers, etc., but simply cannot handle them yet. Other than spicy I have to keep the bottle of water handy of course but luckily am able to eat "regular" food. I have to chew longer and take smaller bites which is a new skill for me to learn, but a small concession to make. Fortunately I do have about 50% saliva back and only 3 months out of treatment. But again, without knowing all of the variables it is impossible to compare our situations. A very good friend of mine who is 15 months in front of me and is of similar age, similar cancer, identical treatments, gave me some great advice. Considering what you have been through it is highly likely that you will only see significant change about every 3 months. Daily or even weekly progress is hard to see. Be patient. Also, it is possible that it will take 12-18 months for you to arrive at what may be the long term "normal". And the new "normal" may be different from the old "normal". The great news is that you, your medical team, technology, your friends and family, have saved your life. Never underestimate that. I wish you the best of luck as you continue to improve......and you will continue to improve. Stay in touch. JK

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Hi JK,

My last treatment was 28.March.2007 and am just now able to eat a few spicy things, most everything else is fine, given enough water!
Glad to see I am not the only one to see that we HNC survivors need to redefine "normal". Even if my recovery goes no further than it is now, I can live with that, literally.
On the brighter side of my "new normal" is I look forward to getting out of bed now just to enjoy a sunrise that I well could have missed if not for modern medicines and treatments.
Life, even given the new normal, is good!

BILL

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Amen to all that you say. There is a great line in one of my favorite movies (Shawshank Redemption) where Morgan Freeman as Redd says "you have to get busy living or get busy dying". I have never appreciated life more than now and realize that it is soooo temporary I better get busy living. Be well.........JK

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