1. < Head & Neck Cancer

Extremely tired 6 weeks after finishing treatments chemo and radiatin

Posted by nancy101 @nancy101, Jun 2 4:17pm

Hi there! My husband finished treatment 6 weeks ago ( radiation and chemotherapy for 7 weeks) for base of tongue hpv cancer. He was feeling good(okay) and now for the past 2 weeks he’s very tired ( lots of naps throughout the day) and lots of coughing . Finished his steroids about 3 weeks ago. Wondering if there’s any correlation ?
Went to oncologist 3 weeks ago. Blood came back good..
is this normal? When does everyone start feeling better? He is not eating as much as I’d like him to. Pretty skinny lost about 22 lb so currently weighs about 138lb 5”7 tall. Thank you for any advice or insight.

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Jody aka mojo244 | @mojo244 | Jun 3 8:22am

Before I started stage IV treatments I weighed a solid 235 by the end of treatments I weighed 140 and now 8 1/2 years later I am holding the 170 range.
During my treatments and after I was on a pain management regiment and all I did was sleep, ALLOT!
One day on my own decision without discussing it with my oncologist I decided to ween myself off from my pain medications which included a fentanyl patch. I was a Deputy Sheriff K-9 handler/trainer and was well aware of the dangers of addiction so my mindset was to get off these drugs as quickly as I could. I reduced my intake over a week or so and had no problems after stopping completely. In fact, I kept all my pain medicine within sight to be sure I could see them yet not reach for them!
Anyway, excuse my tangent. After I stopped taking my pain medication guess what happened? I wasn’t tired all the time and began watching TV and feeling more alive!
I was never able to return to work and am left with many post treatment problems but I’m alive.
If your husband is on pain management I would suspect that is why he’s tired.
BUT, before stopping the medication I strongly suggest that he speak with his oncology team about it first. Stopping to soon could be a bad thing!
My oncology team couldn’t believe I stopped my medication and had no issues but I think I was in a complete mind over matter?

MOJO

REPLY
1 reply
sandy8043 | @sandy8043 | Jun 3 8:43am

I went thru the same thing. I had tongue cancer as well. I got a real boost every week from the steroids I took along with my chemo. After that was done, energy was low. I think my body was worn out from all the surgery, chemo and radiation. My sense of taste returned but not my appetite. I have to remind myself to eat. I never feel hungry. It took a while to crawl out of the hole. But I have more energy now than I did. I'm 68 so the healing is slower . I still nap after lunch. Docs and nurses all said to be patient.

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1 reply
nancy101 | @nancy101 | Jun 3 9:32am
In reply to @mojo244 "Before I started stage IV treatments I weighed a solid 235 by the end of treatments..." + (show)
@mojo244

Before I started stage IV treatments I weighed a solid 235 by the end of treatments I weighed 140 and now 8 1/2 years later I am holding the 170 range.
During my treatments and after I was on a pain management regiment and all I did was sleep, ALLOT!
One day on my own decision without discussing it with my oncologist I decided to ween myself off from my pain medications which included a fentanyl patch. I was a Deputy Sheriff K-9 handler/trainer and was well aware of the dangers of addiction so my mindset was to get off these drugs as quickly as I could. I reduced my intake over a week or so and had no problems after stopping completely. In fact, I kept all my pain medicine within sight to be sure I could see them yet not reach for them!
Anyway, excuse my tangent. After I stopped taking my pain medication guess what happened? I wasn’t tired all the time and began watching TV and feeling more alive!
I was never able to return to work and am left with many post treatment problems but I’m alive.
If your husband is on pain management I would suspect that is why he’s tired.
BUT, before stopping the medication I strongly suggest that he speak with his oncology team about it first. Stopping to soon could be a bad thing!
My oncology team couldn’t believe I stopped my medication and had no issues but I think I was in a complete mind over matter?

MOJO

Jump to this post

Thank you Mojo!
He is weaning himself off the hydromorphone and a phone call into our oncology team about it or a lower dosage.how long before your throat didn't hurt? He struggles with every swallow.... we have the mouthwash which helps a bit temporarily.
Take care and love your great attitude! Its hard with so many changes post treatments.

REPLY
2 replies
nancy101 | @nancy101 | Jun 3 9:39am
In reply to @sandy8043 "I went thru the same thing. I had tongue cancer as well. I got a real..." + (show)
@sandy8043

I went thru the same thing. I had tongue cancer as well. I got a real boost every week from the steroids I took along with my chemo. After that was done, energy was low. I think my body was worn out from all the surgery, chemo and radiation. My sense of taste returned but not my appetite. I have to remind myself to eat. I never feel hungry. It took a while to crawl out of the hole. But I have more energy now than I did. I'm 68 so the healing is slower . I still nap after lunch. Docs and nurses all said to be patient.

Jump to this post

Thanks Sandy. Yes time and I thought the steroid had a lot to do with it.
I thank you for your response. I hope your appetite returns and glad your energy has returned.
How long ago did you have treatment?
My husband gets the CT scan next month so that will determine if surgery is needed...
Yes be patient with the patient I was told.
Take care!

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1 reply
marksalzwedel | @marksalzwedel | Jun 3 9:57am

I'm 56 and went through this last fall. Took a while for energy to come back - probably 4-5 months or so after treatments until my energy started feeling "normal". Now 7 months out and I still have some stinging when I eat certain foods, but better than it was even a couple months ago. Hang in there!

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1 reply
sandy8043 | @sandy8043 | Jun 3 10:13am
In reply to @nancy101 "Thanks Sandy. Yes time and I thought the steroid had a lot to do with it...." + (show)
@nancy101

Thanks Sandy. Yes time and I thought the steroid had a lot to do with it.
I thank you for your response. I hope your appetite returns and glad your energy has returned.
How long ago did you have treatment?
My husband gets the CT scan next month so that will determine if surgery is needed...
Yes be patient with the patient I was told.
Take care!

Jump to this post

My chemo and radiation were finished end of Jan. 2024.

REPLY
nancy101 | @nancy101 | Jun 3 10:35am
In reply to @marksalzwedel "I'm 56 and went through this last fall. Took a while for energy to come back..." + (show)
@marksalzwedel

I'm 56 and went through this last fall. Took a while for energy to come back - probably 4-5 months or so after treatments until my energy started feeling "normal". Now 7 months out and I still have some stinging when I eat certain foods, but better than it was even a couple months ago. Hang in there!

Jump to this post

Thank you for you response! Glad to know it should and will get better!
Take care too! Glad your recovery is going well!

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Jody aka mojo244 | @mojo244 | Jun 3 10:49am
In reply to @nancy101 "Thank you Mojo! He is weaning himself off the hydromorphone and a phone call into our..." + (show)
@nancy101

Thank you Mojo!
He is weaning himself off the hydromorphone and a phone call into our oncology team about it or a lower dosage.how long before your throat didn't hurt? He struggles with every swallow.... we have the mouthwash which helps a bit temporarily.
Take care and love your great attitude! Its hard with so many changes post treatments.

Jump to this post

I’m really not sure when my intolerable pain stopped because I was on some hardcore pain medication. I just had the feeling that I needed to end the pain medication. So after I was off my pain medication I absolutely still had pain, especially when I talked, drank fluids but it was tolerable.
BTW, my food was through my feeding tube for nearly a year and then after that I ate oatmeal 3 times a day for about a year!
Nothing helped for my dry mouth other than brushing my teeth several times per day.
MOJO

REPLY
kmlnj | @kmlnj | Jun 3 2:20pm

So sorry. I do find Kate Farms liquid nutrition food helpful. Like a high end, healthy Ensure.
It would be good to get some more weight on him.
I finished 35 radiation and weekly chemotherapy in March. I do get tired. I have to push myself.
Take care.

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nancy101 | @nancy101 | Jun 3 5:28pm

Thank you! He has a high protein/calorie plus mini ensure drink 375 calories but struggles drinking 3 a day. I will check out Kate farm ... He doesn't have much of an appetite if any and throat is sore .
Thank you for reaching out and I hope you heal quickly. Take care... one day at a time...

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