Question for someone who has been through this

Old Chinese Proverb'
Every Won Different......

Sorry, I know that's not much help, and I guess a lot depends on just what you are feeling that's different.

Anxiety, more than likely that's going to hang around for awhile, especially just before each CT or PET scan.

Taste, more than likely that will improve with time, some more than others. At 2 1/2 years post rads, I have neraly 95% back.

Saliva, same response and recovery as above.

Various aches, pains, sore spots that come and go...more than likely for a few years.

Turky Neck, swelling from fluid build up under your chin and throat...more than like for 9 - 12 months if you have had rads.

L'Hermette's Sign, the electric, numb like shock that you get when you touch your chin to your chest. Also a result of rads usually, again will more than likely go away 9 - 12 months post.

Fatigue and lack of energy, again, depends, some get their energy back quicker, some don't and some eventually have thyroid damage (again from rads) that might show up several months - years post rads.

But other than that and a few more that I probably missed, I feel great, LOL....

Actually I do feel pretty good, but have had all of the above along with various other side effects that keep on giving, primarily as a result of rads.

Some have long term side effects from the chemo they were given to boot.

But in all honesty, I feel pretty good, have nearly 95% of taste and saliva. Not on any meds other than a little protonix occasionally for acid reflux...

There is a list on the SuperThread of side effects, and TonyB just posted another thread recently, re-iterating many of the same and a few additional side effects.

Best,
John

mrapp said:

Yea
Hey John

Yea I guess I know it depends on the person, but as bad emotionally as I have been lately I need something to encourage me. If its not mucus (wife helped me with that)its very sore teeth .. and I mean all teeth in the back .. top and bottom. (I go to dentist Wed). I have a horrible taste in my very dry mouth. I have dry sneezes. My neck is sore. My body feels sore. The peg tube is sore and oozes stuff out . All I want to do is stay in my recliner. All day I have to drink gatoraid ... so I get up and use the restroom 6 times a night.. (maybe more). My clothes just hang on me .. I lost 35 lbs. These are the ones on the top of my head.

Mitch .. Florida

Mitch
Gatoraid? At your stage, with my PEG and post-tx, Ensure and water was about the most I could handle, and I was weening myself off the Jevity in favor of pancakes w/loads of butter and syrup. Six weeks, though, I was also back to work. Are you? Could be part of it- being active as possible, along with still watching the Nutrition. Yes, you are changed- it changes us all, but many of us gradually get back to being close to as we were before. You're still alive, Mitch, and got this 2nd chance at living. Try to make the most of it. You've just done battle with a killer, and have lived to tell about it. That's something to be very happy about.

kcass

mrapp said:

Kent
I know your right about being active but its hard to face. My doctor will not release me back to work until I am gaining weight and not using the peg at all. Thanks for your understanding and your honesty.

Mitch .. Florida

Feeling better
Mitch, You will adjust to your new normal and the odds are you will never be 100% of the "Before Cancer Mitch" if nothing else it has affected you emotionally in ways that will stay with for the rest of your life and I guarantee it has shuffled your priorities (caregivers, hospitals, friends and other patients as well as those who avoided you from fear of the unknown) in some way or another.

You will however will be 100% of the "New Normal" and I promise that will be something you can easily live with once you accept it. My New Normal (for 12 years after treatment) consisted of carrying my water bottle, tinitis in the ear, not eating steak, being the last to finish dinner and an empathy I never had for someone when they were wearing their turban to cover the hair loss. I now understand that most cancer patients want to talk and they want honesty and this is something that you will now be providing (I hope).

All of us want to wakeup from this nightmare and find things are normal again; well in most instances that doesn't happen.

Be strong, patient, and understanding and one day very soon you will realize that you are one again fine and life will start back on the fast track.

Denny

Wow I hope this ramble makes sense - I am sick afterall.

Agree
Mitch,

Pretty much agree with the others, you are only 6 weeks out. You do what is known as " Cook" for roughly 4-8 weeks after treatment. Some people bounce back quickly, others take the full 8 weeks before they feel the slightest bit better.

Can you get any food down orally? As mentioned above, pancakes became my friends for awhile. Scrambled eggs with syrup on them to help slide down my throat. Hot cereal that was cooled to room temperature. The more calories and nutrition you take in now will increase the speed of your energy returning.

We understand how you feel when you say you just want to sit in the recliner, but, put into your head that you want to do something, no matter how small the task. A simple walk down the street and back after eating something gives you a reason to relax in the recliner if you are tired from the walk.

I made it a point after each radiation treatment to come home after driving myself to and from the treatment, to go outside and chop wood. My neighbors thought I was coo-coo, but I would do it for 10-20 minutes if I could. Now I had a reason to be tired, not from the treatments. I would take a nice nap, get up and feed myself thru the Peg Tube and go for a short walk to get the nutrition moving. It worked for me, try to find something that you enjoy, a little hobby anything to get your mind side tracked.

My Best to You and Everyone Here

tonyb said:

believe me brother i have been there....
Mitch,
Hang in there, Things usually get to the roughest point several weeks after treatment ends. You should be turning the corner soon, and things will get better slowly. Like was said above, you have just went through a tough battle. I know it seems like this stuff goes on forever, but you just gotta give your body time. I am about seven months post radiation and chemo, and i feel pretty good for the most part. I now take thyroid medication, i Had felt cold all summer but now i got that under controll. Taste buds are 70 percent, swallowing is good now, i still drink a lot of fluids with meals. I don't carry water everwhere i go now, but i do stop and tank up with water a lot. So believe me it is gonna get better, but it is gonna be your own story, and the way your body responds will be different than mine. The main thing at this point is just keep on keeping on, eat as much as you can stand too. Keep hydrated, and don't let depression get a hold of you.
Get outside as often as you can, go for a walk,nap as much as you need to. Dont get depressed get determined. Thats the way to come out on top, in this thing.
Best of luck to you, Tony

Hey MRapp
Listen to Tony and Kent above. I can't tell you how important attitude is in this whole process. You will get better, but it will be much slooooooowwwwwwwer than you like or want.
I am 18 months post treatment and had a PEG tube for 13 months on top of that...I couldn't see the end in sight but it did get better and I slooooowwwwly recuperated. I still have issues like tony and Kent do, but we are all glad to be here dueling with our problems.
Hang in there buddy and just measure your progress monthly, not daily or weekly. You must be patient even as much as you don't want to....

all the best,
Steve

Hi Mitch

Good question but it is hard to give you an answer as it really depends on you and your body. In my first treatment I was back to my old self with in 6 months but after my second treatment I never did get back to my old self again. Like they say we are all so different on how we handle the treatment but don’t give up you will get there soon.

Hondo

GETTING BACK INTO THE GAME
Mitch, the others have said it pretty well, so I will just add what worked for me. At my 6 weeks, I was a mess, mentally and physically. I was fortunate that I had most of my employees would take turns stopping by my house to visit and were eager for me to return. I too lived in a recliner for almost 5 months as I could not lie flat in a bed. it gets to feel like all you have in life is the pole to hang the feed bag from, the tv remote and the recliner.

I just decided one day that I would make a few runs up and down the steps in my house, and then another day I would ask my wife to leave me some laundry to fold, then i swiffered all of the hardwood floors in my house, ETC ETC. I then told my Doc's that I was going to start back to work, PEG tube and all, even if all it was to just show up and be at work observing. I did that, and from behind my desk, fed myself with a syringe, and started jumping back into the game.

Fast forward to today, i will be one year post tx. on the 20th of this month, and now work 50+ hours per week, go to the gym 3-5 days a week, walk, cycle withmy wife and have even played some lacrosse and Ice Hockey.

In short, making that one little decison to "jump back in" no matter how bad it made me feel was my way to where I am now. I still have a sore jaw, little to no saliva, a raging case of L' hermittes but I can and do manage all of this in the course of my day.

PM me if you want to chat or vent.

IT WILL GET BETTER FOR YOU, JUST KEEP PUSHING FORWARD EVERY DAY!!

Best

Mike

Six weeks out I was still very bad.
I could hardly get out of bed. No, I cannot say that I feel anywhere near like I used to. However I can say, that I settled into my 'new normal' and for that I'm grateful.

Baygal said:

Now talking about LIVING - with side effects
While I was sitting with my wife, Vickie, today as she was undergoing her second round of Chemo, I had the opportunity to talk with the technican who was administering her drugs. She said she has been doing this for about eighteen years. She said she marvels at the progress that has been made in cancer treatment. She remembers when people were worried about dying, now they're worried about what side effects they will have. There was no effective treatment for the nausea caused by Chemo, now they complain about fatique. Guess people didn't worry about fatique when they're throwing up their toenails. IMRT and TOMO radiation treatment now save patients from getting totally fried.
Just a few weeks ago, I too was worried about losing my wife, now I'm so very thankful that we get to live with a "new" normal. What a wonderful thing that is.
Bob

Living with side effects
Bob as someone who had 35 radiation treatments and 7 chemos and had some bad side effects but not the horrific ones that some endure; I agree with your wife's tech. Wendy, he said this tech had been doing this for 18 years..
It is no day at the beach, but with a good support system, a sense of humor and that life is like a half full glass instead of half empty; you can get thru it.
I am a living example. I was stage 4 and my ENT didn't expect me to live. I lost 30 some pounds (134 to 101 and then dropped more when the PEG first came out)...I have put on 6 pounds, eat almost anything I want, can have a cocktail now and then (and it tastes fine), more energy than before treatment and LIFE IS GOOD.
I was told at the James that when they started adding chemo to the radiation for head and neck cancers that the success rate was better.
Sorry Wendy that your husband said if he had to do over again....maybe with some more time under his belt he will feel differently.
Nancy aka toughcookie

waywest said:

Living -with side effects
Bob,
That's a pretty cavalier attitude from your radiation technician given that one of the "side effects" of the treatment is cancer. Speaking as someone whose husband very nearly died from the side effects because his carotid artery was damaged from radiation, I am not so impressed with the "efficacy" of the current treatments. In fact radiotherapy and chemo have been around a lot longer than 18 years.Side effects of this treatment can manifest for many years postX.
The survivors on this forum have been through unspeakable pain and some will live with many side effects forever. This forum has been an incredible resource for me since I would otherwise not know what to expect each time a new "side effect" reared it's ugly head.
I can tell you that I cannot imagine my life without my husband but 6 months post treatment,
there are still days when he tells me that if he had known then what he knows know he might have chosen another option.I know I am off topic now but you and I cannot speak to the suffering survivors have to endure nor can your technician.

Wendy

Hi Wendy. As a cancer
Hi Wendy. As a cancer patient currently suffering from all the effects of surgeries and radiation, your point is well taken. I think Bob was just trying to be encouraging. Your points are all correct. I hope your husband has improvement with his symptoms and side effects. Now that I am a cancer patient, I have a deeper empathy for people like your husband. I sincerley hope he begins to improve at a quicker pace. I also give you alot of credit for coming to this site and gaining such insight in order to help your husband. God-bless,

Jim