Hi. Does anyone know from experience if it is common to have a lot of tiredness even after 4 months of finishing radiation treatment? Johnny (my husband) finished radiation on 11/29/02 and had the modified rad. neck dissection surgery on 2/6/03. He lately has been very tired a lot - sleeping most of the day, and I think this is kind of unusual after being off treatment for this length of time already. Would anyone consider this "normal" - does radiation still cause one to feel extreme tiredness after finishing it 4 months ago? Sleeping is not a sound one either - since he does have a problem with sleep apnea, and I'm sure that does contribute to his tiredness to some degree. Also - his appetite is so-so, but not nearly like it was before. He doesn't get the "hunger pangs" like he used to. From personal experience - has anyone noticed their appetite still affected after treatment, or is this a cause of concern? He does eat solids for the most part, but he still has swelling and pain in his shoulder and side of face, neck, etc. after the surgery was performed. I don't know - but in my opinion he seemed to have more energy a month ago than he does today. Go figure. Any info. you can share would be appreciated. Thanks.

As with all issues that seem abnormal to you, your doctor should be presented with these questions, as there may be issues that those of us answering are unaware of. They may also recognize these as being a symptom of something more important. In my own case, four months after treatment I was still sleeping a great deal. The impact of radiation on a persons body does continue for sometime after treatment stops

Thanks for the comment Brian. John has an appointment with the doctor tomorrow to see how the stitches in his neck are coming around, etc. He had to have his wound "re-stitched" since after doing some simple therapy exercises at home - the wound opened up and started bleeding like crazy. It's weird - and the surgeon has seen this - but there's a "hole" in a part of his neck where the stitches keep opening up - and on occasion, John can hear a "squishing" sound coming from it. The Surgeon as I mentioned has seen this, and is not too concerned about this - he said it will heal on it's own. He has also been taking Keflex to help combat infection. Today, John was really feeling lousy - he was complaining of a pounding headache and of course, stiffness and tightness in the shoulder/face/neck area where the surgery was done. He also was sweating quite a bit. I hope this is not a sign of infection - but thankfully, he does have an appointment with the surgeon tomorrow to see how everything is doing. I was on a search engine, and noticed a particular web site that mentioned that it is not really uncommon for some people to have fatigue even "years" afterwards! I don't know how true that is - but with the problems that he is having with his neck and the swelling, etc it may be all related to that. Guess I'll find out more tomorrow.

It would not be uncommon for a healing difficulty to exist is radiated tissues. Keep a vigilant eye on that area, as long-term wounds are highly susceptible to infections. Do not leave your doctors office tomorrow with any unanswered questions....

Hi Donna,it is indeed very common to feel tired even months after treatment. The energy level seems very difficult to return to normal. I share the same experience with Brian when I was deeply depressed three months after treatment. I was totally indifferent to people and things around, felt sorry for myself to be so useless and helpless. After waking up for an hour, I felt like lying on bed doing nothing and the mind was full of evil thoughts. Like Brian, I needed medicine and counselling to go through this dark period. Keep an eye on your husband and talk to the doctor about the fatigue.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Donna, the business about the wound coming undone and having problems sounds definately not normal. The tiredness is. I was blessed (or cursed) with a boss that insisted that I come to work part time about 3 weeks after I finished radiation. Even if it was just for a few hours to annoy my co-workers.

Another group of friends insisted I meet them for breakfast at 8 in the morning--the "old fart's club" The restaurant is a 15 minutes walk from my flat. Luckily down hill.

Thing is, while the group of friends and co-workers are very supportive, they also darn well meant to keep me busy and active.

Yes, even though the surgery was in Sept, the radiation ended end of Nov, I still have a stiff shoulder, some swelling and the whole side of my face neck and shoulders are numb, and about 4 in the afternoon I just run out of gas, especially on physically busy work days. But, I know if I hadn't been cajoled back to work so soon, I would have lost touch with the business, and possibly not recovered so soon.

Main thing is to get that neck wound business worked out. After that, one step at a time, but try and get John to keep moving. The law of physics applies to people also I've found "bodies in motion tend to stay in motion, bodies at rest tend to stay at rest"

I like that obtuse application of "physics" ... well enough that I think I will steal it and use it in my presentations to patients. You know they say, that the sincerest form of flattery is theft....

Thanks everyone for the advice. The doctor said the wound was healing but in a "different direction" than the rest of the area! I am still kinda puzzled on that one - but the doc did say he could resume doing his swim therapy. John still feels tired - but the doctor didn't seem too concerned about that either. He really made no comment one way or the other. John on the way back home this evening did manage to eat a Burger King cheese Whopper sandwich and a fish sandwich.........so that was good to see! I know the nutritional value of fast food is not good, but at least it does offer necessary calories to help get some strength back. He can eat solids as I mentioned - just not as much as he used to, and some foods are still definitely "off limits" such as chocolate, spices such as ketchup (still burns! along with mustard - another big no-no!), snacks such as chips and anything too hard and crunchy or on the dry side - including french fries. I imagine like everything else - it takes a lot of time, and a lot of effort on the body in the healing mode. Heck, I am pooped and want to sleep even with a simple cold - I can just imagine how it is with potent treatments such as the radiation, and having surgery a little over a month ago. Anyways, if anything new - I'll keep everyone posted. Thanks again for the advice - and good wishes to all of you in the recovery journey.

Brian, I think I "borrowed" that from someone myself. Not sure who though

Donna, the fact that John managed to deal with a Burger King Burger and fish sandwich is darn good. As well as I was doing I still can't deal with burgers that well. As for spicy, well here it comes as either bland, or REAL hot as in 4 peppers hot. Can't taste the spice, but sure feel the burn.

Could be some of the tiredness is from the food or diet. My wife fixes some sort of fairly awful tasting soup that involves some sort of Chinese mushrooms, we both agree that it doesn't taste that good, but is supposed to be good for cancer patients. I do get somewhat of an energy boost out of it. So, if maybe John's changed diet to different foods because now he can eat them and couldn't before, might be eating low energy producing foods.

JetAge - thanks for the comment. I don't know how much of the food he is eating is contributing to the lack of energy - I'm sure to some degree it is, and I am trying to incorporate more variety of foods into his diet so he can get more (and better) nutrition. It isn't easy - because a particular food he can eat one day without much problem - can be difficult the next. It's so weird. So I never know what to prepare sometimes for him - and he was never much of a fruit and veggie eater - even before the cancer diagnosis. I suspect since he is having a hard time with the inflammation in his neck from the surgery he had - this is the main culprit that is making him so tired. His strength isn't back yet either - a little bit of exertion and he breaks out into a sweat and gets so exhausted he has to sit down again. It's discouraging to know that this swelling problem can linger for months - I don't know how he can cope like this, and me either for that matter! Thanks for listening.