Continued pain at the site

Noellesmom

My husband successfully completed his 35 radiation and 3 Cisplatin chemo treatments almost three months ago. Unfortunately, he continues to have a good deal of pain at the site where the cancer was causing symptoms, in the area of the ear. Jim had late Stage III/early Stage IV hypopharyngeal and base of tongue cancer.

Radiation oncologist ordered a CT scan last week which came back clean. Jim continues to take hydromorphone and wears a fentanyl patch to help with this pain. They don't alleviate it completely but make it manageable most of the time.

Doctor says next step is a pain management specialist.

Just wondering about everyone else's experience with pain post-treatment.

Thank you.

Scambuster

Questions
Hi Noellesmom,

Sorry to hear Jim is suffering this pain after 3 mth out.

I have a few questions: did he have surgery ? and what type of pain is it : constant or does it come and go ? Is it sharp shooting pains, dull aching pain, or throbbing pain ?

With some more information, some here may be able to share their experience and help with some input.

Regds
Scambuster

Noellesmom

Scambuster said:

Questions
Hi Noellesmom,

Sorry to hear Jim is suffering this pain after 3 mth out.

I have a few questions: did he have surgery ? and what type of pain is it : constant or does it come and go ? Is it sharp shooting pains, dull aching pain, or throbbing pain ?

With some more information, some here may be able to share their experience and help with some input.

Regds
Scambuster

pain
Good morning, Scam.

Jim didn't have surgery.

The pain is constant and he describes it as a serious aching pain. I've asked about throbbing (trying to tie it possibly to blood pressure, which has been good) but he says it is not. No sharp pains reported.

Had a CT scan last week to check it: came back with no evidence of problems.

He is now starting his third round of prednisone to reduce any remaining swelling.

Any experiences shared would be appreciated.

Thank you.

missusS

Noellesmom said:

pain
Good morning, Scam.

Jim didn't have surgery.

The pain is constant and he describes it as a serious aching pain. I've asked about throbbing (trying to tie it possibly to blood pressure, which has been good) but he says it is not. No sharp pains reported.

Had a CT scan last week to check it: came back with no evidence of problems.

He is now starting his third round of prednisone to reduce any remaining swelling.

Any experiences shared would be appreciated.

Thank you.

pain

Noellesmom, my husband is having a similar experience with a new onset of pain.  He is two months from last treatment - same rads/chemo and no surgery.  He was improving a little around week 6, eating more regular foods (no PEG) and coming off fentanyl patch then seemed to get thrush (and associated pain) which didn't completely go away with pills but nystatin to finish it off completely blew the lid off on pain at the cancer site.  Stopped Nystatin.  More general previous pain is gone from the tonsil area/ top of throat and now very specific to site of tumor on right side at base of tongue but occurs with any swallowing, not just eating but worst with eating.  Raking pain is best he can describe.  Also ache in shoulders but maybe from throat exercises?  And he can't stay awake - always nodding off.  Just moved from liquid acetimenophen/codiene back to stronger pills of same.  Waiting on CTScan results and some better pain management.  Also hoping therapy for lyphedema will help.  That starts next week.  Maybe somewhat limited on meds because of blood thinners from blood clot in original PICC line.  I'm so glad your ctscan was clear.  I will also be glad to hear what others say.  It helps so much to do this journey with others!   Will be praying for you both.

wbcgaruss

I Am Sorry To Hear

That your husband is having pain issues and glad they are working diligently to figure it out and get it under control. I am glad he is eating more regular food. It sounds like he is going through a number of recovery issues coming out of this which just takes time. Whatever you come up with to manage the pain use it regularly as it is supposed to be used such as every 4 hours, 6 hours, etc. They always told me to stay ahead of the pain so I hope you soon get it under control. As far as sleeping a lot I had a long period where all I wanted to do was sleep. This treatment wears you out and it is important to rest and eat enough and hydrate enough which seems hard to keep up with when you feel so tired. I had to force myself to get up and move around a bit, maybe do little chores, vacuum a bit or whatever then take a nap again. If I would not have done that I think I would have slept all day.

And to Noellesmom hope they get Jim's pain and problems under control soon.

Prayers to you all-Take Care-God Bless

missusS

wbcgaruss said:

I Am Sorry To Hear

That your husband is having pain issues and glad they are working diligently to figure it out and get it under control. I am glad he is eating more regular food. It sounds like he is going through a number of recovery issues coming out of this which just takes time. Whatever you come up with to manage the pain use it regularly as it is supposed to be used such as every 4 hours, 6 hours, etc. They always told me to stay ahead of the pain so I hope you soon get it under control. As far as sleeping a lot I had a long period where all I wanted to do was sleep. This treatment wears you out and it is important to rest and eat enough and hydrate enough which seems hard to keep up with when you feel so tired. I had to force myself to get up and move around a bit, maybe do little chores, vacuum a bit or whatever then take a nap again. If I would not have done that I think I would have slept all day.

And to Noellesmom hope they get Jim's pain and problems under control soon.

Prayers to you all-Take Care-God Bless

Sorry to be on this older thread

Russ, 

I didn't realize that I posted this on a 2010 thread.  So sorry.  I did start a new thread after we saw the doc yesterday.  Thanks, as always, for your quick response and comforting words.