Tired after Radiation & Chemo .. Is that normal ??

Bob has finished his radiation on Apr 1, then on 1 week later had his last Chemo light (Ebitux). On Apr 2 he had his implants/reconstruction surgery completed. He is on his 18th HBO treatment and they will re-evaluate on his 20th treatment if they will continue with 10 more. His face has finally healed from all the radiation/redness and sores. He still is having to use a feeding tube, since his obturator can't stay up (Besides the surgeon wants his implants to heal without anything touching them). All in all Bob is on the road to recovery. The implants prob. won't be really healed until Sept and at that time he can get his obturator to attach to the implants (Steak .... first meal of choice). We're starting to introduce some "real" food ... well, maybe... I should say, blended, puree food like cream soups, malts, etc. Even though he has the feeding tube, we want him to start introducing some "real" food to help him gain some weight.
OK ... my question is .... Bob still seems to be tired still !!! He doesn't sleep that well at night, gets up about 4 times to potty, get some water (his mouth is still dry, but not as bad as it was before). Then maybe around 10am, he needs to take a nap. I know radiation/chemo knocks the crap of you ..... but when does it get back to normal ...or is this the "new" normal for Bob. I just want my husband to get his life back. I hate what cancer has done to him. I HATE CANCER !!!!!!!

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Yeah I HATE CANCER too. They told us the two weeks after treatment is over are still really bad. It gets just a tiny bit better each day. My husband felt a lot better energy wise when he got off the pain meds, those just wiped him out. All he did was sleep. We got a lot of encouragement today from someone that posted after 1 1/2 the weight was really coming back and that at 3 hrs out saliva is at about 80%. my husband was really excited about this news. Be patient, we really get excited about any improvement. My husband is 6 months out and ate a piece of pizza the other day, yes pizza. No red sauce cause that kinda burns, tons of olive oil and garlic and really thin, soft crust. He is soooo excited. Still can only eat one meal a day of solid food and the rest are shakes. Sadly he did tell me today that he is always starving, so we have got to find so other things he can eat. Good luck so glad his chemo and radiation are over

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My husband is tired all the time. Sleeps all day. (Hope I don't pick up this habit, though there are times that I want it all to go away...)

We have 11 radiation treatments to go. Countdown is beginning!

He's had the feeding tube installed, though he only uses it part of the time so far, and I am sure it will be full time soon. His weight continues to go down. :(

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GlamazOn,

If he is losing weight, he needs to take more by mouth or more by the feeding tube. I had six cans a day. I tried to get in 2300 calories a day. I did not lose any weight. It also will give him more energy. If he is sleeping, you can get a liquid food pump and just hook it to his tube. Radiation does knock you out. Sleep is good for healing. I don't think it will become a habit.

Paula

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Yes, the exhaustion is horrible. Lack of motivation, sleepiness, and overall weakness. My last radiation was days before Thanksgiving and I'm slowly getting back to normal. I am taking 15 mg of Morphine which seems to help. Days that I don't take it I'm very tired. I'm down from 30 mg and within a few weeks expect to be rid of of it. As for nighttime sleeping, I have to get up 4-5 times per night between 11pm and 4am to urinate. I sleep best between 4am and 9am when I can actually get some consecutive hours, so I've adjusted my sleeping habits and feel quite a bit better..

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Rosenrem,

I see that you are only getting five hours of sleep a day. I hope it is enough for you. I try to limit my liquid intake three hours before I go to bed. I also make sure that I go right before I go to bed. Congrats on the lower dose of morphine. I switched to a 800mg of ibuprophine when I weaned myself off the pain meds. Are you getting proper nutrition? How far long are you from your treatment?

Paula

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When will the pain ever subside? My husband is 7 months out of radiation due to throat cancer. He had 3 pet scans with no reacurrance of cancer. Still can't eat because it is to painful. Still on oxycodene as well as a pain patch. He has lost so much weight even with the feeding tube and taking 2300 calories aday. Has anyone had any personal experience with this type of cancer? Any input would be greatly appreiciated.

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I actually sleep from about 10:30pm to 9:00am. The problem is that I wake up every hour until about 4am. So I do get sleep but just not quality sleep. From 4-9 is when I sleep without interruption. Eating "real" food continues to be a challenge, I try to get three small meals down a day, hoping to increase the portion size. I lost 40 pounds, 10 of which I needed to lose but 30 of which have left me looking famished. I am gaining weight VERY slowly, up 5 pounds in 3 months but it continues to be a challenge. In addition to three small meals, I drink 6-8 nutrition cans/bottles per day. I was a very active, high energy person prior to treatment and am very frustrated with the slow progress of recovery. I continue to hold out hope as I hear other stories of more normalcy (if that's a word) after a year or 1.5 years.

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Glad to here you are getting more than five hours of sleep. I am almost three years post treatment for nasopharyngeal carcinoma. I am able to eat only moist soft foods. I also suppliment with an Atkins protein shake. It only has 1gram of sugar. I still have throat pain due to having a dry mouth. The more I talk and be active, the worse it hurts. I try to not let it stop me. Recovery was slow, I had muscle trismus and jaw problems. I was able to swollow right after radiation, but it hurt. I just kept drinking my shakes so I could get rid of the peg tube. I was on oxycodone for about a year. I slowly weaned myself off and went to the ibuprophen. A list of foods that I have found that I could eat in order of ability is: eggs, oatmeal, yogurt, cottage cheese, cup of fruits, jello, pasta w/ sauce, mac & cheese, chilli, soft vegetables, shrimp w/ sauce, tilapia w/ sauce. Chicken, tuna, beef can be ground in a food processor and added to a liquid or sauce. Sauces I use are tomatoe base, garlic and butter, beef and chicken gravy and I even did a honey sweet barbacue the other night. I have been taking cream soups and adding beans and canned vegetables. That way I get my protein and veggies. I always say, Just give me the extra sauce." This is my new normal. I also was a very active person. I have had to sell my horse because my mouth would get too dry when I rode her. I now try to walk my dogs and lift weights at home. I have water with me at all times and my biotene rinse and sprays.

To Page1,
Is your husband doing the sodium and baking soda rinse? Also, nyastatin for thrush? Is he able to swollow? Recovery does take a long time. My throat was swollen for the first year. I even lost my voice. I also lost my hearing, but thanks to ear tubes, my hearung came back. If he is losing weight, add one more can. Glad to here he has clear scans.

Paula

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Well, I am glad my DH can sleep - every minute he is not suffering is a blessing.

I keep reminding him to "have another can" either drink it or use the tube, but then I shut up and I won't assume the baby-sitter nag role. He really does need to make more of an effort. As if he's not already using all his inner resources to their limit. Right now the tube is used mostly for irrigation and hydration.

Hindsight - wish I had said "no" to treatment. But then I have always been a one-day-at-a-time person, trying everything, see what happens, not rejecting things prior to investigation.

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Glamaz0n ... I hear ya ! We referred to his can food as "560", since that's the number of calories per can. I feel sometimes like I am pushing him to have another can. I don't think they realize how difficult it is to be the caretaker. At times I just want to get in my car and run ..... but then I realize, it wouldn't be fair to Bob. I just can't even imagine what it has to be like for him for not being as strong as he was before, not being able to eat regular food, not have a "normal" life or he may never have a "normal" life again. I have to remember he lost his whole upper jaw and now has a big hole in the roof of the mouth because of the "F'in Cancer. So I need to be more patience with him. Most important, I have to remember that inside he is still the man I fell in love with over 25 yrs ago.
Hang in there Glam .... we will all get through this. There has to be special place for caregivers in Heaven, God I hope so :-)

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Can you please tell me how the sodium and baking soda rinse are beneficial? No he can't swallow anything other then a few small sips of water or powerade at a time. He has tried swallowing soft food...things such as cream soup, pudding, scr eggs but finds it to painful after a few small bites. After he eats a few small bites, not only is it painful...but he bleeds slightly....only a small amount.....maybe like he punctured a scab or sort. He did have a bit of thrush, but the doc gave him a antibiotic and that is no longer a issue. He has no burning in the mouth ...only his throat. All his test have come back negative and we are all at a standstill why he is still in pain 7 months later. Paula...you say that your throat was swollen for first year.....were you able to eat?
Did you have a peg tube? How long after radiation did you actually eat....soft foods at that.....where as you were not in pain? He has his on and off days with sleep. Some good...some bad. He tries to get as much excersise as possible. He has a great attitude for a person who has gone through so much in a years time. He still wakes up every morning with a smjile even though it hurts like hell !!!

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Page,

Tell him to deal with the pain as it will lesson the more he tries to swallow. I drank a lot of water to get any food down and used pain killers as well. I was also a big fan of smoothies (ice cream, milk, non fat dry milk, strawberries, and wheat germ) as well.

I should add that I did not have a feeding tube so I went from 160 to 125 pounds and when they threatened a nasal feeding tube, I forced myself to deal with the pain.

I found that baby food that was real food (squash, carrots, cereal) was best as welll as mashed potatoes, gefilte fish, flounder (not over cooked). worked well.

Also look to make some lentil soup and then blend it before serving. It is tasty and nutritious and agains seems like real food. The key is cut out irritants in food (pepper, acids (vinegar, citrus), and sharp tastes like mint.

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Page,

Yes, I had a peg tube that I used for almost the whole year. I slowly started to drink ensures. I did take oxycodone for the pain. I still get my throat scoped every three months by my ENT doctor. The sodium rinses helped me from getting mouth ulcers. It was a recomendation from my radiation doctor. The nystatin kept me from getting thrush. I am sorry your husband is having a hard time. I would be concerned if I was bleeding.

Paula

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My Radiation staff kindly gave me a term for post radiation... "hit the wall", it happened about 2 weeks after completion of radiation and chemo. I slept for 15 hrs or more a day, shuffled, could not eat as the burn was at it's worst. Again, all of the advice is so on target, suffice to say, it takes time.
do the right stuff, rinse, hydrate, find a way to get nutrition ( no matter how much it hurts).
Watch as much funny TV or read funny stuff, as truly laughter does help ( as silly as it may sound) something is released in the brain when you laugh, even though the act of laughter caused pain, it still relased those feel good hormones.
Hit the wall lasted a long while, chemo shuffle, foggy head, no desire to even interact with the world, the dog and I slept all day every day, it was great for the dog, as he snuggled under the covers, and assumed the role of sleeping protector. Bless his little canine spirit, he was just what I needed. Non judgemental company, warmth, a heartbeat, and intuitive compassion. Those were the days of deep purple rings under my eyes, the rapid weight loss, lack of interest in anything, and exhaustion like no other ever experienced. .. BUT, it does get better. Have no expectations, help him with basic hygiene and mouth hygiene, and I guess pray a whole bunch for your sanity and his healing!
Blessings to you and yours.
Pene M

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To read more about side effects of radiation and chemotherapy see:
http://dribrook.blogspot.com/p/radiation-side-effects.html
http://dribrook.blogspot.com/p/basic-skills-for-laryngectomees-by.html
I hope you will find it helpful.
I Brook MD

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For all of you caregivers who are complaining of your role, try to be the person going through the treatment and the physical and emotional suffering. I cannot read anymore of these posts, so I am going to take myself off of this site. Glam, you amaze me by the things you say. Page, your post made me feel like, gee I only wanted to help. Just be happy you don't have cancer.


Goodbye

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Sorry you're leaving, Paula. I have always known that actions speak louder than words - whatever I have said that offended you, I know that I am DOING ALL I can to help my cancer patient, and I am not complaining to him.

If you really want the truth, he's had psych problems since before cancer ever entered the picture. He may be bipolar. Driving while confused and getting lost in another state 500 miles away, several serious bike accidents requiring hospitalizations and surgeries, wrecking 2 cars (we aren't wealthy and can't keep buying new ones), being verbally abusive to me, on and on. And I repeat, this is BEFORE the cancer dx.

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Hello Bob and Family, I am 5 months post chemo (11 treatments) and radiation (38 treatments ) and 4 months post neck dissection right side. All in all I am recovering slowly and feel pretty good. I lost 52 pounds so I am trying to gain some weight back now and I also have a feeding tube that I still use daily. I have had this tube in for 10 months now and I can eat some foods but they taste funny and I can swallow fluids pretty good now but not solid foods that well. All I can say is keep the faith and keep a positive outlook and keep your mind and body active and you will make progress one day at a time. I also have sleeping issues and need to take ambien to sleep through the night but I am trying to ween my self off of that as well as my oxycontin that I take for neck and shoulder pain. God Speed To You and Your Family...You will be back to 100% in a short while.....Try to drink a few Guiness's everyday they help me out alot....Best Regards ...!!!!!

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I am not complaining about my role as a caregiver. I only came to this site/forum to try to learn and gain more knowledge from other people who have this type of cancer. You can only read so many books. Although reading is very informative, first hand experiences, knowledge and men and womens personal stories are our greatest teachers..............as the saying goes
" Experience Is Your Best Teacher. Because I was not getting my questions answered by the doctors, I joined this forum to try to get the answers that I needed from individuals who are experiencing or have experienced this type of cancer. So with all that said.....I will continue to post and read. I hope all have a wonderful day and may god bless us all.........

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I am only here to learn from others' experiences. I, too, have found that the doctors know a lot about general procedures, but do not always focus on individual life circumstances. Their (the docs') job is to eradicate the cancer. Period. Which may or may not involve the best treatment considering any one individual's situation. They are usually sitting on the "one size fits all" bench because that is what they do. Get rid of the cancer.

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