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.

Donnjean, Mark here, I want to tell you you are doing great! For me the radiation effects your asking about happened to me and went on for a long time. I'm wondering if anyone has suggested that Johnny elevate his head and sholders with a board under the mattress (2 to 4 inches is wht I did)? I did this and it helped with swelling quite a bit. some of the swelling is probably lymph that has not figgured out how to flow out since the surgery. The extra tilt of elevating his head will help with the flow.

I agree big time with the idea of staying "in motion" and the motion does not have to be hard excercise. just a slow walk at a favorite park or a trip to a museum...what ever. It has a positive effect on the mind as well. I found humor to be very helpful. The mind is the best place for healing to start and one of the hardest to keep on track.

As for food, my wife kind of struggled with that too. I actually started to make myself blender meals. If you haven't tried that you'd be suprised what works in a blender! There is not a single food that won't work in a blender. Sure you have to get used to the new texture but the taste can still be there. I personally blendered such foods as steak (grilled first), an entire double whopper with cheese (close your eyes for that one it tasted great however), An entire salad, bacon and eggs (fried first)... just add enough milk to get it to go. Beyond that there is no end to the fortified smoothie type drinks: try one banana, one or two scoops of vanilla ice cream, 1/2 to 1 cup oatmeal (not cooked), a spoon or two of yogurt, some high protein powder (available at most health food stores) fresh fruits and a 1/4 cup of walnuts are optional add milk if needed. you can play with this recipie all you want. The important thing is to get extra good nutrition into Johnny because the various treatments cause the body to use up many stored nutrients.

Last, I still need more sleep than I used to. My suggestion is don't worry (good advice for anything) but keep your eye out for the depression thing.

Two months after I was done with radiation (5 1/2 years ago), they sent me to the dietition at the hospital who put me on ( I was 5'5' 118 lbs) 80g of protein a day (you'd obviously need more) and 220mg Zinc, 500mg Vitmain C twice a day, 400 mg vitamin E twice day, and a multivitamin that contains everything under the sun. I also take 500mg calcium twice daily.

To help get the 80g of protein, I still drank a can of Ensure PLUS for breakfast, drank fortifeid milk with my meals, etc. Yogurt also has lots of protein and easy to eat.

They did this to improve my ability to heal but I do think this helped with my energy level as well and still take all those vitamins aand zinc today. Haven't had a sniffle since. I'd check this with your doctor first since you are not supposed to take vitamins if while you have cancer.

Mark and Ellen, thanks for the great advice. Ellen - Did you mean that a person shouldn't take any vitamins while undergoing radiation/chemo treatment? If so - I agree, my husband's radiation oncologist said the same thing, but I don't see why there would be any problem with it after the treatment has stopped. We were told it's always best to wait a few weeks before taking any vitamin and/or mineral supplement. Anyways - John doesn't take any supplements now - mostly because they are way too big for him to swallow and also he has a plethora of other pills he takes for various other ailments. Mark - those were some good tips, and I will try the elevation w/the board idea. He has tried a recliner and even several pillows and even a special "4-in-1" pillow that can be manipulated in different positions - but not much help - he somehow (don't ask me how!) always manages to get in a flat position. But you never know - this new idea may just do the trick! Thanks again for all the helpful info.

DonnaJean,

Just another quick note about vitamins. Right after my surgery when I couldn't swallow or eat much, my husband put liquid Centrum in my orange juice every morning. The only problem this caused was some staining of the teeth, which wasn't a big deal. It came right off with a gently buffing from the dentist.

Take care.

Anne.

Mark,
Your approach sounds very creative. I am 7 months out from radiation and still have my PEG, although I only use it about once a day now. I drink a lot of Boost Plus and try to eat more, but can't seem to eat enough to gain weight. I had my esophagus dilated three times and it seems to be opened us sufficiently, but when I do eat I can only seem to eat small portions. I have tried many things...cheese cake, grilled fish, vegetables, soups, oatmeal, pasta, rice krispies..but eating is slow, difficult and , I repeat, hard to eat much volume. I have found that I can finally drink milk shakes and smoothies..that I just could not get down a month ago.
I would like to get rid of the PEG and eat more, but I am unsure if it is my fault for not trying harder or if things are moving along as they should. I could call the dietician at MD Anderson...that place never follows you up on their own..they leave it up to you to contact them.
Any advice? Brian, why did you keep your PEG so long?

Danny G.

The interior of my mouth was full of open radiation sores / mucocitis for months. Eating anything hurt like hell. I was losing weight all the time and I couldn't put the brakes on it. It just took that long for the tissues in my mouth and throat to get to a point where I could tolerate eating things. Every little spice, or salt, or warm or cold etc. was painful. It was that long for me to heal well enough to be free of it. Besides everything tasted the same...like nothing. Today, five years out I had spicy salsa on some huevos rancheros for breakfast at a restaurant with a friend. I never thought I would be doing that again....

Brian,
Your progress sounds good. I will sit down with something as simple as a bowl of oatmeal before me or a plate of soft vegetables at a cafeteria or yesterday, broiled red snapper at a Greek restaurant...although the mucous is now under control and my mouth is not sore...as you said, the food doesn't have that much taste , and by the time that I get up, it looks like a bird has been pecking at the food. I just cannot seem to eat very much. I don't know if it is due to a shrunken stomach or the swallowing function still healing, but I barely eat one half of much of anything. I am getting a little tired of yogurt and Boost Plus but I realize that all that now stands between me and normal life at the moment is being able to eat and gain weight.

Danny G.

Danny, if you want more of my wacky blender ideas just let me know (yes I did one with tuna in it). I did not have as much of a swallowing problem but a had the awfull sore throat first from the tonsillectomy than from the radiation. in addition the surgeon nicked a nerve for 1/2 my tongue so manipulating food inside my mouth was a battle, and then of course no salivia.

The smoothies were great because they were fairly normal food (not ensure which I now loath), didn't require much chewing (so you can slam them) and if you use ice cream they were soothing from the cool.

AS for the Vitamin thing during treatment nobody told me that and I took megavitamins IS THIS A BAD THING?!

I found bowls of oatmeal and broiled fish are very dry food and difficult to eat after radiation. I think part of your problem is you may be trying to eat foods that do not contain enough moisture. One would think that something like mashed potatoes would be easy, but I found them too dry unless I buried them in butter and gravy. While oatmeal was like glue, cream of wheat wasn't if I loaded it with honey, butter and milk.

Try eating hollondaise or a butter dill sauce if you eat fish, lots of applesauce with pork, rare lamb chops(leave the fat on) and mint jelly, rare steak, lots of cranberry with turkey and gravy. Find veggies with lots of moisture like peas or corn. Salads - pick lettuce which lots of water. I chose romaine with blue cheese. Anything with vinegar was a nono. Try pasta with an alfredo sauce. Then there are a million different kinds of soup and lots of good desserts like creme brulee, etc. I happen to like classic french food so I also ate things in sauces like veal in mushroom and cream sauce.

It also took forever to get a meal down, so take a book and chew and relax. You also need to figure out what you can and can't taste and this changes by the week. My sense of smell increased greatly after radiation so everything smelled marvelous, but it was a while before pork tasted good and at least 6 months before I could tell a pile of sugar from a pile of salt.

Hang in there and keep trying. Hope this helps.

Something I've found out, chicken seems awfully dry, even in soup. However, duck or goose has higher oil content in the meat, so even well done these birds aren't as dry to eat.

Was at a company Christmas dinner about 2 weeks after finishing RT, just starting to eat solids well but still dealing with dry mouth. Don't remember what it was on my plate but it was something not healthy and high cholesteral, but edible and moist. Person next to me asked if I don't get worried about my cholesterol level. I just looked at them like they had grown a second head, and they replied, "guess not at this point, cholesterol would be the least of your worries"

One other thing I'm going to jump in here with. The literature for cancer patients at the hospital, and also my oncologist mentioned that having a glass, pint or can or bottle, of Guiness occasionaly (no you cant drink a six pack a night) with meals helps stimulate saliva and the Guiness also has some useful nutrients in it. I don't think that solution would be good for everybody, but has anyone else heard this?
Bob