Hi, my name is Peggy, wife of Scott who finished his radiation treatments on 12/5/03 for stage iv SCC of the tongue and tonsil. Since he finished his treatments, he is sleeping ALL of the time. At first I thought it was ok as the body needs to rest in order to heal. Right before Xmas he was hospitalized for dehydration because he was sleeping around the clock and wasn't taking in enough fluids. Here we are 5 weeks after treatments and he is still sleeping between 16-22 hours a day. He would probably sleep even longer if I didn't wake him up to eat and drink. He never woke up yesterday until 8:30 p.m. Is this normal? I am trying to get him to go to his doctor and he is refusing to go. Any help or suggestions would be greatly appreciated!!!!

Hi Peg,

Did Scott have surgery + radiation and Chemo?
What type of radiation did he have? IMRT or Field radiation? I know the radiation keeps on cooking for two to three weeks after treatment is over.
Is he eating through a PEG tube or by mouth?
If he had a full dose of field radiation he may sleep this much to give his body time to heal. He still needs to input the right amount of calories and proteins to properly heal. How is he taking his medication? By mouth or PEG tube? Remember
every person reacts different to the same treatment. Hopefully someone wiyh more medical experience will post on this issue for you. Best of luck, Dan

Hi Peggy,

The effects are different for everybody. Needing more sleep is very common, sleeping all day is perhaps less common. The problem for scott may be worse because of dehydration and lack of nutrition and depression could be part of the problem.

Perhaps you could try to get him on some kind of schedual for periods of awake time and insist that he eat and drink something each time he is awake. I also think it is important to try to get him moving (short walks etc.)

I hope this helps

Hi, Peggy.

My husband had a similar experience except it was during chemo treatments before Thanksgiving. He slept so much that I would watch him to make sure he was breathing! He went from bed to couch to bed again and I could do little else but fret about what to do.

Turns out his white counts were off, he was dehydrated, his electrolytes were out of wack--potassium and sodium levels were terrible. He was put in the hospital and they got him straightened out after a few days. One thing we learned that had masked us discovering all of this sooner was that his pain meds made him sleepy. He was on Percoset and morphine, and I attributed his sleeping to the effects of those meds, not realizing there were other things going on that were very serious. Morphine alone works better now to control his pain and best of all he's lucid now. I felt like I was alone on a ship at sea when he was sleeping all the time. It was like he had already left me.

That was a tough lesson for me: I can't expect him to take responsibility for decisions while he is so ill. I'd ask him if he was OK, and he'd insist yes, that he was just so weak and tired. He said just let him sleep a bit longer. Then, hours later, I'd insist he get up and talk awhile, drink some water, let me know how he was feeling. I asked him if he thought something was wrong and he said, I don't know. Let's wait a bit longer. This went on for days.

I finally took matters in my own hands and insisted he go to the doctor. That's when they put him in the hospital. He told me later that he had felt like there was a veil of fog between him and the world during that time and he couldn't have gotten out of it by himself.

So, consider all of these factors if your husband continues to sleep such long hours each day. It's not good for him, not to mention what it must be doing to you.

I hope things get better soon.
Christine

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Husband diagnosed with SCC of hard palate, right tonsil, right nodes in neck. Currently undergoing chemo and awaiting surgery.

One of the reason it is fairly easy to obtain SSDI for cancer patients is that cancer fatigue is a well known side effect. I slept a lot also in the early post Tx. I am back to normal now pretty much (at 10+ mos' post Tx). He is still in the window for experiencing the full effects of his treatment. I had to be rehydrated a few times myself. It's a whole lot of work to drink 2-3 liters of water a day like they recommend. Make your appointment for rehydration in infusion rather than emergency - it's a lot faster and much more pleasant. You'll be in and out in an hour.

Hi Peggy,

My Dad finished treatment on November 6th and he is STILL sleeping as many hours as your husband!

It was strange because he did not sleep this much during the whole treatment. He was even getting better 2-3 weeks after treatment ceased. Then he got worse again and has continued to maintain that level.

We took him to the ER on Monday (he was halluncinating) and all of the tests came out perfectly normal. The hallucinations were attributed to the morphine dosage (which has since been cut back). While the hallunications have pretty much stopped, the sleeping all the time has continued. I would also recommend trying to get your husband to go get tests done to check that all of his levels are correct.

I just wanted to let you know we are in the same situation and I know how upsetting it can be. I miss my Dad... I can't even talk to him without him falling asleep!

Take care and I hope everything works out!

Peggy, I won't consider sleeping 16 plus hours a day to be normal after treatment even though extreme fatigue is inevitable. Dehydration can be a very serious problem and we surely need to drink a lot of water or other liquid to maintain our life at this point. How can your husband drink if he sleeps all day and night and so I suggest the best solution is to get him hospitalized for a few days for rehydration.
A curious point about weight loss. It seems that people on this forum lost a lot of weight after treatment. I told my oncologist about this and he was surprised at the great drop. He figured out it might be because western people are heavier than Asians. The normal range of weight loss among his patients is between 10 to 30 lbs. That's why when I lost 10 lbs, he admitted me to hospital for observation to find out if feeding tube was necessary for me. In the hospital I get treatment, an average of only 25% of head and neck cancer patients need to have a feeding tube during treatment.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Karen,
it just goes to show how differently medicine is practiced in other parts of the world. Although I didn't have a feeding tube, it was on the NCCN guidelines as a standard part of treatment protocol for head and neck cancer patients. In the US probably 25% or less DON'T get a feeding tube. I lost 60 lbs. myself and have leveled off at 30 lbs lighter than I was (which is not a bad thing) I am the same weight that I was back in my twenties. And yes, Americans are overweight in general.

Most of my weight loss was due to nausea (the anti-emetics were not that effective for me) and constipation from all of the pain meds. I also had trouble consuming enough calories and fluids due to sleeping a lot during treatment and post Tx. Energy management was very critical.

Pumpkins Dad and Scott are just reminders of how different we all are and how differently we respond to the same treatment. I took a lot of morphine, Vicodin and Duragesic patches and didn't even get a buzz! It barely even masked the pain. Nowadays I sleep relatively little.

Remember that the effect of radiation is cumulative and the full effect of it doesn't occur until after Tx is over. The body gets pretty beat up in the process. The pain meds could be playing a role also.

These observations should be mentioned to the doctors on your follow up visits. I kept a journal of my day to day experiences with a log of food and water intake.

Thanks for all of the replies. I'm taking him to the doctors today (FINALLY, he agreed to go!). I'll keep you posted.

For what it is worth...
I finished 28 IMRT on 12/29/03. Prior to radiation treatments blood tests showed I was anemic (blood loss from surgery), so I had a blood transfusion (2 units) and had epigene (sp?) shots almost weekly to help keep my blood counts up.

The blood transfusion helped immediately with energy level. Now, I am trying to remember to take iron tablets.

also anti-depression med may help. Glad to hear he's heading the the doctor - good luck!