Looking for advice

Rick2924

Calories are good.
Mike:
Previous posts regarding the difficulties you will experience during radiaion are on the money. Really consider the PEG. I didn't and went from 150 to 120. I'm still struggling to gain weight 2 years later. Your number on job will be consuming calories and keeping hydrated. It'll be hard, it'll hurt worse that you can imagine and you'll hate the way things taste. But it will be your job to eat and you have to keep at it every day.

Find out what dose of radiation your treatment calls for and have your teeth checked out by a dentist who is familiar with the effects of radiation on your oral cavity. If you need any extractions, have them done now. The radiation will greatly reduce the vascularity in your mandibles and extractions after your treatment can lead to bad things (ORN).

I'm sure the reples you've received may sound pretty scary, but we have all made it through treatment, and you will too. Good luck.
Rick

dennis318

Rick2924 said:

Calories are good.
Mike:
Previous posts regarding the difficulties you will experience during radiaion are on the money. Really consider the PEG. I didn't and went from 150 to 120. I'm still struggling to gain weight 2 years later. Your number on job will be consuming calories and keeping hydrated. It'll be hard, it'll hurt worse that you can imagine and you'll hate the way things taste. But it will be your job to eat and you have to keep at it every day.

Find out what dose of radiation your treatment calls for and have your teeth checked out by a dentist who is familiar with the effects of radiation on your oral cavity. If you need any extractions, have them done now. The radiation will greatly reduce the vascularity in your mandibles and extractions after your treatment can lead to bad things (ORN).

I'm sure the reples you've received may sound pretty scary, but we have all made it through treatment, and you will too. Good luck.
Rick

No Fluffiness Here!
First we all are here for you, 2nd everyone had there own way of handling the Beast and recovery, Eat like it was your last day and gain weight....you'll lose it and more in about 3 weeks, or will not want to eat at all, I tossed my cookies and drank only water for the last 2 weeks, I had no peg tube, my choice, and stupid may I ask, they thought they where going to lose me, My weight dropped 60 lbs. (202 to 142) everything usual starts the 4th week, I smelled everything as aluminum or a sewer sytem lid cover being removed, yes gross as it sounds, I felt thats what it smelled like, weak and tired all the time, thirsty..couldn't drink..Ice water if i could get threw the sores in my mouth. Being strapped down with that dam mask was a pain to me, I had that thing taken out of my house. You may get a little freaky on that, anytime you want a answer we all been there, please nothing you ask is stupid, or whinney, it can be a real pain, some can brave it, it depends alot on you and what it does. Good Luck My friend in your journey, and keep in touch. Dennis...Usually 2-4 weeks and I felt better after the radiation, I am still not there and the 28th is my first year out, I still get fatigued, and trying to gain weight, it takes a while.Dennis in TN

sweetblood22

Rick2924 said:

Calories are good.
Mike:
Previous posts regarding the difficulties you will experience during radiaion are on the money. Really consider the PEG. I didn't and went from 150 to 120. I'm still struggling to gain weight 2 years later. Your number on job will be consuming calories and keeping hydrated. It'll be hard, it'll hurt worse that you can imagine and you'll hate the way things taste. But it will be your job to eat and you have to keep at it every day.

Find out what dose of radiation your treatment calls for and have your teeth checked out by a dentist who is familiar with the effects of radiation on your oral cavity. If you need any extractions, have them done now. The radiation will greatly reduce the vascularity in your mandibles and extractions after your treatment can lead to bad things (ORN).

I'm sure the reples you've received may sound pretty scary, but we have all made it through treatment, and you will too. Good luck.
Rick

Just to stress on the dental
Just to stress on the dental stuff a bit. I'm in the mood because I just got home from having another 5 teeth filled. I brush five times a day and use trays and my teeth are still a mess. I have no saliva. I am having almost every single tooth filled. It's been only 20 months since rads ended. Previously in 15 years I only had one cavity filled and that was just before rads.

My dentist is a really nice guy and has experience working with HNC patients. He was also on my tumor board.

sportsman

Information
You have certainly come to the right place to get information. You will read many different stories on this site, you might say the good, the bad and the ugly. Radiation is hard, there is no use in trying to sugar coat it for you. As everyone on here says that it effects different people in different ways. My experience was probably what I would call the ugly and probably now even almost four years post treatment would still be in the bad range. Continue to get all the information you can gather and be prepared to put up a hard fight. It just about whipped my butt but I survived and am still living to talk about it almost four years later. I am a male that was about fifty eight and a half years old when I was diagnosed. I am now about sixty two and one half years old. I was in tremendously great physical condition before this happened. I lost fifty pounds and most of my muscle mass during treatments. However the doctors seem to think that my physical condition helped me sustain the fight to beat my cancer. Just remember Don't Give Up, Don't Ever Give Up. God Bless

Clearblue

sportsman said:

Information
You have certainly come to the right place to get information. You will read many different stories on this site, you might say the good, the bad and the ugly. Radiation is hard, there is no use in trying to sugar coat it for you. As everyone on here says that it effects different people in different ways. My experience was probably what I would call the ugly and probably now even almost four years post treatment would still be in the bad range. Continue to get all the information you can gather and be prepared to put up a hard fight. It just about whipped my butt but I survived and am still living to talk about it almost four years later. I am a male that was about fifty eight and a half years old when I was diagnosed. I am now about sixty two and one half years old. I was in tremendously great physical condition before this happened. I lost fifty pounds and most of my muscle mass during treatments. However the doctors seem to think that my physical condition helped me sustain the fight to beat my cancer. Just remember Don't Give Up, Don't Ever Give Up. God Bless

Rad effect adn weight
My wife is only 92 pounds.
She was about 108 before aesophal squamus and gastric pull up in 2008.
She is also about to have RADs so im very concerned about the weight issue.
She cant have a PEG because of the stomach pull up so she will have to have a j-tube, in her intestine. As she has Fanconis anaemia we fear the side effects.
As i havent any advise to give, i hope i havent encroached on this post.
Clear.

Hondo

Hi Mike
You are right on it, its going to kick your butt pretty hard, but you will like many of us make it through the treatment and be a survivor. On food I agree with all the others for now you need to eat, after that you can worry about staying healthy and eating healthy.

All the best to you my friend
Hondo

Jimbo55

Mike
So much good advice so far.

The PEG, if you need it, get it. Don't try to be a hero, there is nothing to gain by refusing it. I started each day with a protein shake. Also used the salt/baking soda gargle and L-Glutamine. Mouth sores were minimal in my case. Drank a lot of coconut water, still do.

Exercise can help with the fatigue which will surely come. A good walk daily does wonders, physically and mentally I believe.

Food is medicine - your body will need the nourishment to fight and survive, not just the cancer but also the treatment.

I began to notice the first bit of improvement after about 5-6 days post treatment. I woke up that am and just knew that I felt better than the days before. It has been gradual improvement since then. Am 6 months out now, still have some dry mouth, but physically I feel fine. I lost about 20 lbs during treatment and have yet to put any weight back on.

I am not trying to sugar coat this, just pointing out that everyone indeed is different. My journey was not as trying as others here. Hope yours is similar. Cheers

Jimbo