Hello family, I'm trying to figure out where I stand as far as what to expect post treatment. I've done 35 treatments and have 1 left. I have been WAY ahead of the curve throughout the 1st 90% of TX as far as side effects go. No neck burning until week 5 and no mouth sores, or trouble swallowing until I was 5-6 treatments away from the finish line. Can anyone give me an idea of where this went in your own experience. As far as...did it really get worse during the 1 st week post TX. Were the first 3 weeks post TX similar to the last week of TX. Where was your high point of low point as far as timeline? Much thanx in advance. MaineWill

Actually MaineWill, The pain is much worse as time goes by. Mostly from severe Radiation and Chemo burns in my mouth and throat plus I must add in the damn Rad seed implants. Drs say it will continue to get worse. This is one time they hit the nail square on it's head.

You have done amazingly well with your treatments! Congrats on your final one being tomorrow!!!!

I went thru several very low points when I went thru chemo/rads. I was hospitalized a few times for malnutrition/dehydration and that was with using a feeding tube. I felt horrible and was so weak I could barely walk. One of my worst days was when I was too weak to walk and my son had to push me in a wheel chair. I was so ill that we went to the MO without an appointment. She took one look at me and I was admitted to the hospital and stayed there for about 10 days.

Radiation will keep on working even after you finish your treatments. Thats why you will unfortunately feel lousy for the next couple weeks. Most of us started to begin to feel a little better after 2 - 3 weeks post rads. It takes a month of healing for every week you have had radiation. Be patient, you are almost at the finish line! Very soon you will begin to feel better. It will be 2 steps forward and 1 step back for the next few weeks.

Remember everyone is different!!!! My experiences are very different than what you have experienced. Jim had a radiation seed implants which is different than what you went thru. So you see, 3 people and 3 completely different experiences.

Christine, you are a very tough and admirable Gal for my money. One of my living heros too.

Thanks Jim! What else could I have done? Give up? I didnt have the strength to took to give up. When I tried to quit rads, my son and nurse wouldnt let me.

We all do what we have to do to get thru our treatments. I dont know how you deal with your ongoing pain problems. Nobody should endure that for days let alone years!

Sorry to get sidetracked, Will. Your question is a good one. Im sure you will get more different answers. Best to rest when you need it and soon you will wake up one day and feel almost human.

Best wishes with your recovery!!!!

Hey Will- I am begrudgingly telling you that for the 2 weeks after treatment were the worst. Not having the daily distraction of the RT app't left me feeling like I was watching and waiting out every single second to see if I was getting better or worse! I think that we focus so much on making it through treatment that once we achieve that goal we can hit the ground with a thud - since you're "done" treatment family and friends start being a little less attentive and you want to let them go because you're "supposed" to be better when treatment is done. I found that I had to call back my support crew because I'd let them go too early - I needed them even more just to hang out and distract me. I recall fervently believing that I was not and would not get better - the time after treatment was a time of really low spirits - I would try positive self-talk and tell myself that I actually was getting better and before I knew it I WAS!

I truly hope for you a slow but steady recovery!!! Just know that it might have highs and lows for a little while and don't be afraid to keep your posse close to you!
Thinking of you!!! I'd also love to be part of your "posse" if you need a distractor over the next few weeks!!

Thanks folks, I'm asking this because mom is very concerned with the pain meds given my history with addiction. Furthermore, my MO seems to think that someone like me should have less pain meds as opposed to more. When actually, after using a narcotic pain med for only a few days, an addict will be right where he was while using as far as tolerance is concerned. This is not to say that precautions should not be taken, but suffering through this for the last 3 weeks is not the way to go. In hind site what I should have done was to hold off for as long as I could at the beginning, start pain management with tylenol, move to an Ultram type of alternative, and only go narcotic when it was borderline beyond necessary. That might have shaven a week off my total time on the opiate.

I understand that you don't want to seem cavalier about your past history of addiction - but that shouldn't mean that pain management shouldn't be GOAL #1. Your MO is wrong - you're right- perhaps there's a pain specialist you can be referred to that can help you manage the pain step by step - including coverage of the pain now and titration of the meds when the time is right.

You're special Will - get a specialist!

Will,
Comparatively I didn't have a rough go, although everything sort of crashed around me the last week due to nausea.

My first week after RT wasn't much better than my last, but every week thereafter got a little better.

In just a couple weeks, I was again out and about every morning on a long walk but kept my head and neck covered up from the Sun. It took a month or so for the burn on my neck to heal-up. I think getting out and doing things really helps.

I never had a lot of pain and liquid Tylenol EX normally was OK, but I had plenty of liquid Hydrocodone on hand. I never moved beyond hydrocodone and didn't use much of it.

My biggest problem was getting off the PEG and back to eating. Everything tasted really bad for a couple months and at times that was down right depressing. After getting the PEG out, I had a spell where I sort of lost my appetite so it was starting to be a struggle to keep my weight up.

I remember Thanksgiving dinner was only tolerable, but by Christmas I was eating OK

Hi Will. First, Congratulations on getting through treatments! My husband never used any narcotics for pain relief he just used liquid Tylenol. His big issue was nausea and lack of appetite. He didn't think the pain and side affects got any worse when the treatments stopped. He said they kind of peaked around week 5 and stayed that way for a long.......time. Good luck with your recovery.