Hi,
I'm now about 10 weeks post radiation (6 1/2 weeks worth). While some days were definitely not better than the one previous , I felt like I was making steady progress each week: more energy, better swallowing, removal of feeding tube, back at work some, etc., although virtually nothing in the way of taste.
This past week, I've regressed. Couple of days, I just couldn't get out of bed, loss of whatever appetite I had, headache, upset stomach, diahrea, etc. About the same time, I stopped taking the liquid oxycodeine/acetominophen mix (5/235 mg) I had been taking for the past 16 weeks, every 4-6 hours. Is it possible that I'm experiencing withdrawal effects, or do some weeks post-radiation simply suck? Thanks, Sheldon

Hi Sheldon. You're going to find yourself on an up and down ride for a while. I'm eight months post treatment and I still battle fatigue from time to time. Hopefully your sense of taste will start returning soon. Although, it's a slow process. I remember when I was about 6 weeks post tx and I caught my first hint of a suggestion of a taste. I would rate my sense of taste at about 80% at this point -- which is wonderful compared to zero. You hit the nail on the head: "...some weeks post-radiation simply suck." But it will get better. Hang in there...

-Brett

I had withdrawal for about 2-3 days when I quit the narcotics. What you are describing sounds like withdrawal. It is also normal to bounce around a bit in the early stages. You are doing remarkably well. At 10 weeks it was really a struggle just to pound out some stuff on the computer - then I had to lay around and recover my strength. My endurance was extremely short.

Sheldon,
I am also 8 months post radiation. I didn't have the same energy level for about 6 months post treatment. I'm sure everyone is different. I pushed myself back to the gym about at 10 weeks and that helped. I felt better about myself and over the next 3 months built my strength back. The recent issues you've had may be the medicine. I kept in close touch with the Doctor for feedback on any symptoms. For me, the multiple medicines (pain, salagen, nausea) all created stomach problems, that only stopped when I went cold turkey. There were still ups and downs. Intermittant pain, stinging sensations in my neck, etc - I think you said it best - post radiation sucks. Taste is getting better, as is everything else. It was (and is) an ongoing process. Best wishes.. Bob

I forgot to mention, the rule of thumb is 1 month of recovery for every week of radiation. I am almost 17 months post Tx and still not 100% (but closing in). Taste buds are normal and people can once again sit across from me without me blowing chunks all over them ;-)

Did you phase out the drugs with a plan from the doc or did you go cold turkey?

My sense of taste started to return in 2 months. Salt was first, sweets were last. About three months most foods tasted fairly normal. I had IMRT.

Sheldon,

The same thing happen to me. Exactly. It really pissed me off. I thought I was feeling better and BAM. This went on for about 3 months.

Its funny, you feel better then worse then better then worse. It really gets on your nerves. I am 6 months post now and still feel little things nausea, fatigue etc. But it does get better. The good news is your going to live.

Take it easy, but take it.
Robert

SHELDON
My radiation/chemo ended in May and I cannot swallow worth a darn. I cough, sputter and almost puke at each feeding. I am definately not up for food in a public place. Additionally, the symptoms you describe are exactly what I experienced when I came off opiates.
Darrell

Thanks for all your comments, they're a big help.

Gary, in answer to your question about withdrawing from the narcotics, my radiation oncologist guided me through weaning myself off the fentanyl patches (I was at 150 mgs. and it took a few weeks to get down to 25 mgs. and then quit. (as an aside, a very good friend of mine is a palliative care physician and he showed me a little trick for fractional patch dosages. If you buy some clear adhesive plastic and cut a piece that is roughly the size of the patch, you can overlap whatever percentage of the patch onto the plastic to reduce the dose. It's a good way of getting from 25 mgs. to zero, if the cold turkey route is too problemmatic.
The oncologist pretty much left getting off the oxycodeine to me, but told me to taper off slowly, so I went from 2 tsps/6 hours to 11/2 to 1, etc. going 4-5 days at each dosage level. Whenever I lowered the dosage, I increased the frequency closer to 4 hours and then got it back up to 6 hours before lowering it again.

Hey Sheldon,
My hubby is almost 5 months post treatment and not much taste yet. He is just now in a week going back to work for part time 2 weeks, then onto full time. You are doing extremely well so fast. Dan went down on the patches like you, but kinda quickly went off the Oxycodone and he definitely had w/d systems. His was more along the lines of not able to sleep at nite at all for a few nites and something crawling on him feeling. Fortunately, it didn't last too long.
Take care and God bless,
Debbie

Sheldon, just to add my view on post treatment experience. The side effects are accumulative which means you may feel all right just after treatment then it can get worse as time goes by. I could still talk over the phone for an hour without a sip of water when I was 2 months post treatment but now I can't even talk for 5 minutes without a sip. As for energy level, there was time when after I woke up, had my breakfast, read the newspaper and then no more energy for the rest of the day. This lasted for several weeks but when it reached the bottom of the valley, it would gradually go up. Now after I wake up, I work without taking a rest until 11 p.m. You are experiencing something very normal and one advice I share with you is don't push yourself too hard. Don't ever compare with others especially those who have speedy recovery. We are all different individuals. One thing for sure, when you have life, you have hope and things will get better.

Karen

Sheldon,
I remember feeling very bad after I got off of the duralgesic patches, which was about 10 weeks after treatment ended. I am sure that it was withdrawal, and the good news is that the feeling passed rather quickly. I agree with Karen...you can learn a lot from the experience that others have gone through, but cannot always compare your progress to them. I, for example, wore a PEG tube for 10 months after radiation, while many healed much more quickly and were eating much sooner.

As far as taste goes, I believe that some things will never taste as good as they used to . I used to love cokes and Dr. Peppers and now have no interest in sodas at all. Candy doesn't do a thing for me either, although I do love soft desserts like creme brulee and mousse.

It sounds like you are progressing nicely. Keep up the good work.

Danny G.

Hey Sheldon, I think most of us bounce back and forth after radiation treatment, kind of a three steps forward, two steps back type of thing.

I got my taste back pretty quickly (maybe 1-2 months post IMRT) but something is still somewhat "off" now that I'm six months post-radiation (the first round that is). There are just some of my former favorite foods that turn me off now. I think my tongue is on fire everytime I drink something with carbonation.

I, too, did the pain patches and have had two runs now with hydrocodone (once during/after radiation over the winter and once after my second surgery in June). Both times, I remember feeling "blue" and "down" for a couple of days after my last dose of the hydrocodone. I tapered off the hydrocodone for good this past Saturday and I was an emotional wreck the following day. Everything made me cry -- the Lance Armstrong Nike commericials, watching My Big Fat Greek Wedding, watching NBC's emotion-grabbing coverage of the Ironman Triathlon, every post on this board, etc. It took me a couple of days to realize why -- my body wasn't getting that narcotic "lift" anymore...

What fun stories we all have to tell... Hang in there, Sheldon, you are getting better week by week.

Eric