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just wanted to say hi!!!

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hey, Everyone, I just wanted to say hi and that everyone on this blog is in my prayers! I tend to check here once in while; but I am also trying to to keep a positive outlook and sometimes TOOOO MUCH knowledge can have a negative effect; especially me, I tend to over analyze every little detail!!

Well, I a have a week and a half done; 5 more weeks to go. No pain yet, thank god for TOMO technology! I highly recommend anyone getting radiation going to a facility that utilizes this machine! The procedure is real quick and they are able to cut a whole in your mask to help with claustrophobia!!

Unfortunately, the taste buds are gone :( Everything taste like ****! Did anyone find any type of food appealing to them when this happened? I'm thinking one more week and then will mostly only be able to tolerate ensure plus, water, and milkshakes!!

What did the average person use for pain for the back of throat? I don't have pain yet but just was wondering if people use liquid pain killers or some type of fentynal patch!

Hope everyone has a good weekend!!!

Charles

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Glad to hear you are progressing well. Glenn starts your same regeim on June 7th. He's getting TOMO too.

I'll be listening to everyone's advise about tasing also.

Hang in there. Call me anytime you want to talk.

MarineE5
Posts: 760
Joined: Dec 2005

Charles,

Yes, you are correct, everything tastes like S*** at the stage you are at. My taste left me about the 4th treatment. All food tasted like cardboard and the liquids tasted like aluminum, Yuck. But the most important part of that is to continue to take in the number of calories you need daily. At the present time, multiply your current weight by 12 and that is the number of calories you need to take in, to maintain your weight.

Baking Soda and Salt solution. I swear by this as I didn't take any pain med's until about week 5. And even at that time, my Radiation Oncologist said for me to stay ahead of the pain that will eventually come. I was told by the Nurses to put 1 teaspoon of baking soda and 1 teaspoon of salt in 1 quart of room temperature water, mix, then rinse and gargle at least 3 times a day with it and it was suppose to help with the discomfort in my mouth and throat. I tend to over do things. The solution made my mouth semi-numb and took the edge off of the discomfort. So, not being able to taste it anyway.

I increased the amounts to 1 tablespoon of each in the quart of water. And I rinsed and gargled as often as every 30 minutes. Allowing some of the solution to slide down my throat and it really helped me. At week 4 or 5 when I visited the Radiation Oncologist, he asked me how many pain pills I was on per day. I told him I hadn't started taking any yet. He looked in my mouth and said " You know you have sores the size of quarters in there ? "

I said yes, but I am using a higher dose of baking soda and salt and using it every half hour. He started taking notes : ). I did start to take the pain med's which was neuroten (SP ) and the pain did come for a short period for me, roughly 3 weeks and I weaned off the pain med's and continued with the baking soda until the sores were gone.

My Best to You and Everyone Here

Fire34
Posts: 353
Joined: Feb 2010

Glenn
I am about 6 months out now, I had IMRT though. Everything to me still tastes like %^&*. I get by by remembering or knowing that I liked it before radiation etc. Sort of a mind over matter thing. the one thing I could taste and it still tasted like @#$%$ was the protein powder I put in my milkshakes
I was sort of opposite Marine. I used the baking soda/salt water for the mucous which helped and I had the diflucan for the mouth sores. My mouth sores though were associated with my chemo more than the radiation.
Best Wishes & Prayers
Dave

D Lewis's picture
D Lewis
Posts: 1544
Joined: Jan 2010

I'm with MarineE5 on this one. The recipe I was given was one teaspoon salt and one teaspoon baking soda in one CUP of water. Cut the mucous, and calmed the sores very quickly. I still use it several times a day for mucous ( 1-1/2 week post treatment). I also used the hydrocodone solution (one tablespoonful every six hours) as needed for pain, and frankly, I never used it continuously. There was a period I used it every night before I went to bed, but I never needed it round-the-clock. Not using it now. I also had a form of the magic mouthwash - benadryl, lidocaine and malox - for mouth sores, also very effective. That stuff can be swallowed, but I mostly swished, rinsed, and spit. Mouth sores are healing up nicely, so I haven't used that one for the past week.

Keep up the good fight, Irishgypsie!

Deb

rozaroo
Posts: 667
Joined: Apr 2010

I am going on almost three month's post treatment & use the baking soda rinse constantly. It has really helped me quite a bit for pain & mucous. My oncologist insisted that I only use it & no other mouth rise. I was on very little pain meds & have found the rinse totally helped with that also. My oncologist prescribed liquid codiene but I was afraid of becoming dependent on it so used it sparingly. The pain in the back of my throat was brutal at the end of radiation for about two week's. I used the rinse & codiene before bed & that seemed to help ease it.Now I wish I could find something just as good for dry mouth.
Roz

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I gained some of my taste back....Creme Soups where a comeback, Wierd too, things I thought I would never eat, I started to eat, I gave up coffee. bummer, I loved the stuff, Choclate, at first I gae it up, Mt favorite thing is Cream of Wheat, sugar and half and halft anf Butter. Old Time Chicken Noodle soup, crackers and butter, The diced peach cups are good, Hots Dogs are good, please use caution, if it isn't small enough you chokelike @#$!, and I gag. Grits, Cheese and Butter, And Malts made with Ensure, Add whole Milk..Like I said I gained 7 lbs finally, they where more afraid of my weight loss than the cancer taking my life....Hope this helps, let you go. Take Care. Dennis

debbiejeanne's picture
debbiejeanne
Posts: 2584
Joined: Jan 2010

Dennis, I also cannot eat chocolate or drink coffee. I miss both very much. I really loved drinking coffee, I drank it ALL DAY! Now, it has a really bad taste to me as does the chocolate. I don't mind the choc as much now b/c I'm able to eat and I don't want to gain back the 70+ lbs I lost due to the cancer. I was WAY overweight and don't want to be there again...lol. I hope your tastebuds come back for you.
God Bless,
Debbie

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

Charles,

Sounds like things are going pretty well for you. Keep that positive attitude and I'll keep praying for you.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Hi!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

The baking soda did nothing at all for me. I lost my taste by the second day. I started very early with side effects. By the second week I had the magic swizzle with me all the time. I ended up on 75 mcgs of Fentanyl and the peak pain times were more than I could bear.

Hang in there. I made it thru alone and it was very hard but I did it. If I did u can too. We are all here for you.

debbiejeanne's picture
debbiejeanne
Posts: 2584
Joined: Jan 2010

Charles, I'm glad the treatments are going smoothly and I pray that your treatments will continue to go well. Take care.

God Bless,
Debbie

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Charles,

Glad things are going good so far!

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