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What to expect after treatment

Ann G
Posts: 8
Joined: Jun 2010

Hi Everyone,

My husband was diagnosed in January with Stage 3 base of the tongue cancer with a matasis in one lymph node. His treatment consisted of full body chemo, one treatment every three week for three sessions. This was followed by 7 weeks of radiation, 5 days a week where one day each week included a chemo session.

He had a PEG put in in April. His treatment ended about 4 weeks ago. He had a shot of naulasta about a week ago to help boost up his white cell count.

He is feeling very, very tired most of the time. Is this normal? Should I worry? While he was under treatment until Radiation Week 4 he had a lot more energy than he does now. He used to walk our dog at least one time each day. Now I have to accompany him when he goes on a short walk each day and when he has a Doctor's visit. He is not strong enough to go outside on his own.

My husband isn't working but I am concerned about his recovery. He sleeps most of the time.

He does drink one shake a day but most of his nutrition is from the feeding tube. He has a lot salivia, mucusitis, I think it's called and today he threw up all of his feeding. This happended two weeks ago as well. In general he is tolerating the feedings and lost in total 20 pounds.

He generally is an upbeat person but is starting to feel depressed.

Any advice, words of encouragement would be very appreciated.

Thank you.

Ann G

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Hi, Ann;

I finished up my treatment just about four weeks ago as well. Base of tongue cancer with bilateral mets to lymph nodes, treated with combined chemo and radiation. I had three rounds of chemo and eight weeks of radiation. I got the neulasta shot after rounds two and three of the chemo. That shot boosts the white blood cells. My bloodwork showed that my red blood cell count was down as well. The doctor didn't propose to treat it, just told me it would slowly recover on its own over time, and that I should expect to feel quite fatigued until it did. I was pretty energetic most of the way through my treatment. I have also noticed a much greater fatigue afterwards. But, I am gradually beginning to feel better.

I got my tube put in, in week 5 of my treatment when the mucous got so thick I couldn't swallow the shakes any more. I noticed an increase in mucous after treatment ended, which was nasty, but helped to keep my mouth moist. That mucous is now gone, and my mouth is a dry as the Sahara. Taste is slowly beginning to return, so I am alternating the tube feedings with shakes, smoothies, soft scrambled eggs, and mushy fruit and vegetables. Throat soreness is pretty much gone now, so scratchy foods don't hurt so much, but it is impossible for me to swallow pastas, breads, crackers, and anything that requires a lot of chewing, like meat. Too dry.

Be aware that gagging and coughing on the mucous can trigger vomiting, and once that starts, it's easy to spit up all your feeding. Not to worry though. Sounds like your hubby is keeping most of it down. I also lost about 25 pounds over the course of treatment, but I am pretty much stable now. My goal is to be able to take all of my food by mouth, even if it is mostly shakes and smoothies.

Post-treatment depression is a serious issue for many of the folks here. Some of them had their doctors prescribe medication for it, and were very successful in overcoming it. So far, I haven't been depressed. I did ask my doctor for a referral to a physical therapist, as I have a reduced range of motion and less strength in my neck and shoulders. I will be starting that in a week and a half, so I should be physically up for it. Hope so, anyway.

Keep the questions coming. Everyone here will have lots of advice. We've all been there. It appears your husband is right on track for a full recovery.

Deb L.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Radiation takes a lot out of a guy (or gal) and the effects can last a lot longer than one would expect. I too was very tired and slept a lot. It seemed I was always freezing, even when I was wrapped in a blanket. The mucositis was the most miserable side effect of all.
But time is a great healer. It's just hard to be patient when you're feeling lousy.

--Jim in Delaware

Ann G
Posts: 8
Joined: Jun 2010

Thank you for everyone's advice and sharing experiences. It is very helpful to my husband and me.

sportsman
Posts: 98
Joined: Feb 2010

Ann G: Things will get better in time. Radiation is tough and is not forgiving. My doctor says it is the gift that keeps on giving. I had 35 radiation treatments and chemo once weekly for seven weeks. With a PEG put in after my second week of radiation and chemo I still managed to lose fifty pounds. I am surprised your husband is able to work. I did not work from the time of my surgery in December until July the following year. I did sleep quite a bit and and battled depression throughout (though I would not admit it and took no medication for it). I never remember throwing up anything that was put through the PEG. I am now three years and a little over three months post treatment. I have managed to gain back slowly between 24-26 pounds of the fifty I lost. And not bragging my fifty was not fat as I worked out religiously and was very muscular. I have seemed to peak out now on weight gain as eating is so difficult and not enjoyable anymore that I just don't want to gain more as I know it will require more eating to maintain the weight. As you will find out on here that the treatment reacts to different people different ways. Sometimes I think I got the short end of the deal but I know there are others much worse. My wife was my caregiver and it is very important to have someone who will push you through this ordeal. Many times I wanted to just give up but she would not let me. There is light at the end of the tunnel. Although things are not near what I would like them to be, I have now had three plus more years to spend with my family. God blessed me with fifty eight and a half healthy years before getting sick and I know one day I will be whole again. Good luck to your husband and God Bless.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI ANN,

IF YOU THINK HE IS DEPRESSED, I RECOMMEND HE SEEK HELP STRAIGHT AWAY AND PREFERABLY BY A PSYCHIATRIST AS THEY KNOW MORE THAN YOUR MD OR ONCOLOGISTS, SO THEY WOULD BE BETER IN PRESCRIBING THE RIGHT STUFF. IT'S VERY TREATABLE AND THE RIGHT MEDS WILL ASSIST GREATLY IN HIS STATE O MIND. DON'T LET HIM BE THE TOUGH GUY, JUST GET HIM TO THE RIGHT DOCTOR.

FEELING WEAK AND LISTLESS IS PART THE EFFECTS OF THE RADS AND CHEMO AND ALSO A SIGN OF DEPRESSION.

YOU MIGHT ALSO LOOK AT STUDYING UP ON THE 'CANCER DIET' (FOR YOU BOTH) AS GETTING THE RIGHT NUTRITION FROM NOW ON IS VERY IMPORTANT FOR RECOVERY AND CONTINUED GOOD HEALTH. I FIGURE WE WERE ALL DOING SOMETHING WRONG TO GET CANCER, SO TO ELIMINATE THE BAD THINGS : SMOKING, DRINKING, EATING RUBBISH, MAKES GOOD SENSE.

YOU CAN GO TO MY 'EXPRESSIONS' PAGE FOR MORE ON DIET AND SUPPLEMENTS TO BOOST HIS IMMUNE SYSTEM - WHICH HAS TAKEN A BEATING FROM THE HORRIBLE TREATMENT.

ALL THE BEST
SCAM
(SORRY I HAD THE CAPS LOCK ON...)

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Hi Ann,

I am glad you asked the question. I had same as your husband and finished up Dec, 28. You think when treatment is over the hard part is over. NOOOOOO. You want things to start getting back to normal and they just won't. Like they say. The new normal. Things do get better. I got depressed like your husband but finally snapped out of it. If he is like me he just wants to get back to normal and as he is finding out it takes time. My salvia is still not great but getting better. Taste buds not all they way back from food tasting better. I can eat anything and 3 weeks ago started jogging a half mile. I now run 2 miles every other day and about to go to three miles. Wish I could put it better but can only say....IT SUCKS. I do promise though he will start seeing things change weekly. He will not get any stronger unless he starts eating. Cancer or not....you don't eat...then no energy. Eggs is the first thing I recommend. Just eating solid foods is a big boost. Its tough but be supportive and he will find his way back. Best of luck and prayers are with you and your husband.

Kurt
(DOITFOROJ) Do it for Owen and John. My twin 2 year old boys.

Ann G
Posts: 8
Joined: Jun 2010

It's seems like it was a long time ago since I wrote asking what to expect after the treatment is over or will my husband ever come back to his old self? But it was only this past weekend. Since then my husband has all of a sudden starting feeling better. He had his first CAT Scan on Tuesday and it came back perfect. That really gave him a boost. He has started letting people come over to visit him and went to a meeting in our building. He's getting back to his self which is so wonderful to see. It's as if a boulder has been lifted from my shoulders. He even told me he wants to start taking our dog for walks. He wants to get back to life. I don't want you to get the wrong impression. It was only after about four weeks of radiation that he started really having a problem with energy, with depression, with not wanting to see people. Actually it was about that time that he got a feeding tube as well and had to start managing his medications and food via the feeding tube.

I'm writing this to let you know that things do turn around. It's been a really long haul, since his diagnosis on January 6th, three rounds of full body chemo spaced out by three weeks and followed by seven weeks of radiation with one day of chemo each week.

It's just amazing that I only discovered all of you, this past weekend when my husband hit rock bottom. I desperately wanted to connect with other people going through a similar experience. All of this time, I was trying to figure things out. It's amazing that I didn't find you sooner. I'm glad I found you now. It's inspiring how everyone is helping each other.

Thank you.

Ann G

Lena Rose
Posts: 73
Joined: Apr 2010

Hi Ann,

So happy to hear that your husband is improving. It gives me so much hope! My husband just finished treatment (his diagnosis and treatment are very similar)so he's about a month behind yours. What a relief it must have been to have a pefect CAT scan. Congrats and wishing you continued improvement.

Lena Rose
Posts: 73
Joined: Apr 2010

Did your husband opt not to have surgery?

debbiejeanne's picture
debbiejeanne
Posts: 2219
Joined: Jan 2010

ann, I'm very glad your husband is better. All he was going thru was normal. We have all been there and have come thru it. I'm glad the first scan was normal.
That is always a relief.
You and him are in my prayers.
God Bless you friend,
debbie

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