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.

Hi Will,

You have done so well so far! Ken had to start higher levels of pain medication by week 3. Has Dr. Clark sent you to see the Pallative Care team? Ken talks with one of the nurses weekly about his pain and she monitors what he is taking. It might be worth asking about. Ken sees Simone Rinaldi who works with Dr. Kamdar (not sure of spelling). He is hoping to finally start tapering his meds soon with the goal of going back to work on 5/25!

Good luck with your recovery!

Will,
To me the first 10 days afterwards were the worst of everything, although the last few days of the last week were not overly great.
Actually the end of the 1st week post TX was the very worst for me.
I thought my husband would have to take me to a hospital one night, so for the first time I took something prescription for pain, then I slept. Otherwise I had Extra Strength Tylenol. I took it one day at a time. I had not had much problems with sores until the post treatment time. My skin got red in the 5th week, and worse by the end of the sixth week, then continued the same for two or three weeks, then it started to heal.

Undoubtably you will have your own version of recovery when yours is done. The important thing is you are nearly through with TX, and have done well. Keep on top of your mouth--soda rinse, Manuka honey if you've tried that. That's key to me to keep away from the pain medicine. But don't beat yourself up over having to resort to something.
Anne

Thanx Anne, Actually, the honey has already saved my butt and I'm convinced it's why I got through the wholw TX without any mouth sores at all. Now that my TX is finished I am getting some long sores along the sides of my tongue and at the way back of my tongue and mouth roof. The honey burns so I just swish some numbing magic mouthwash, and gargle it before I swallow it. Then I'm safe to use the honey and it gets rid of the sores in about 15 hours. That's for the small ones. They start like little clear perfectly round blisters that when they break turn into a slightly larger blood blister. That's when I use the honey and they go away. The big ones along the sides of my tongue and the ones way in back which are actually behind my uvulia I think I will have for a while. They're white and resemble the scabs left from my tonsilectomy. The honey is definatley working on them but I think I'll have them for at least another week. Thanks a ton for your feedback. Today was a good day and I think it may be down hill from here. I'm hopefull and optimistic. Thanks. Will

I'm with Jennifer - 2 weeks post Tx was the bottom for me. Thank God for Fentanyl & Morphine.

Hi Will, I am a recovoring addict also. The pain managment was very scary and some days I wasn't as honest as I should have been. Two things helped me. I continued to talk about how much I was taking, I kept in contact with my support group/people sponsors, fellow addicts and supportive friends. I then went to a pain managment clinic and worked with the people there. I had a lot of pain in my tongue and I also had/have neck pain and issues since all this started. I didn't fully get off all the pain meds for quite awhile. Just keep being honest and keep people informed. As soon as you keep it a secret I think its going to cause the most damage. I think the best thing was I didn't want to lose all I had as a result of this horrible desease. The pain managment clinic was great.

One thing to add I was very obsessed with the pain killers, managing them and the effects. Its funny how quickly we become so pre-occupied again.

Will

The weeks after the first TX was over were the worst in terms of pain. While I've never been addicted, I do have a very large tolerance to pain medications as a result of a wayward youth so I was very glad for the fentanyl patches. They were the only thing that really worked for me.
Hang in there. You have done so well and soon you will be a seasoned survivor who can tell the newbies that all is not doom and gloom. I don't know if you run races, but if you do, then this is just that last sprint at the 5 mile marker so you can be in the winner's circle of the 10K. Now is not the time to falter.
Charm

Thank you all VERY much. I couldn't agree with you more Wendy. For as much as my mother will ALWAYS worry about me using,suspect me of using, look at me like I'm using, ask me what I was doing in the garage last night, go through my stuff, and ask my X-girlfriend if she thinks I'm using, I will never be able to convince her otherwise. In fact... I came to the conclusion a long time ago that I really don't (can't) give a flying crap. You're right, all I need to do is be honest with myself. November 2005 was the last time for me and I have several friends in NA who's help I will be enlisting as soon as the pain subsides a bit. They have been notified and will be hearing from me soon. Thanks again. Will

Hey there, Will. I read your post only today. I wonder how you are now. I concur with everything Jennifer wrote. Recovery is a slow process. I am nine weeks post treatment and I would say I only started to feel good for about the past two weeks. I have started driving and going out alone and eating by mouth though I still have the tube. Pain wasn't so much an issue for me as mouth secretions and being unable to talk for about one month. Someone on this site said about radiation: it's the gift that keeps on giving. How true. Hope you are feeling better. My best to you. -Michelle