1. < Head & Neck Cancer

Lymphoepithelial Carcinoma Right Parotid + Accessory Parotid Gland

Posted by knb2010 @knb2010, May 31 3:43am

I have shared below my wife recent treatment summary, after 1 month we have due of MRI, Pet-CT and review with treating doctor. But right now she is having mild pain at treated area and at muscle below shoulder, head, sometimes dry cough. Treating doctor and hospital which is 1000 miles away have suggested regular head and neck exercise but it is not working. Is it post CCRT symptoms or sign of reoccurrence ? or should i check with local doctor or wait for 1 month ? kindly suggest any treatment plan..

Shared files

Treatment Summary_ (Treatment-Summary_.pdf)

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jun 1 1:04pm

Hello @knb2010 and welcome to the Head and Neck Cancer group. Speaking as a patient, I can say that after radiation everything is extremely slow to heal. Muscle pain, cough, difficulty swallowing are all very common and expected for months if not several years. We typically look at recovery month over month or in other words 'am I better this month than last?'. When we look at just a few weeks some things get better whilst others get worse or become new issues to deal with.
Neck exercises often help and certainly don't hurt.
The idea that a reoccurrence has taken place is a normal feeling that won't go away for perhaps decades. Even at the five year mark when the doctors tell us we are now at the safe point like the rest of the population, many of us think "Well great. That's where I was when I got cancer!"
We are here to help you through the recovery process. Many of us are very good with specific issues that are difficult to deal with when the doctors shrug their shoulders. Others most likely will jump into this discussion in time. Patients and courage in the meantime. It looks like you have good care.

REPLY
1 reply
cris2 | @cris2 | Jun 1 2:16pm
In reply to @hrhwilliam "Hello @knb2010 and welcome to the Head and Neck Cancer group. Speaking as a patient, I..." + (show)
@hrhwilliam

Hello @knb2010 and welcome to the Head and Neck Cancer group. Speaking as a patient, I can say that after radiation everything is extremely slow to heal. Muscle pain, cough, difficulty swallowing are all very common and expected for months if not several years. We typically look at recovery month over month or in other words 'am I better this month than last?'. When we look at just a few weeks some things get better whilst others get worse or become new issues to deal with.
Neck exercises often help and certainly don't hurt.
The idea that a reoccurrence has taken place is a normal feeling that won't go away for perhaps decades. Even at the five year mark when the doctors tell us we are now at the safe point like the rest of the population, many of us think "Well great. That's where I was when I got cancer!"
We are here to help you through the recovery process. Many of us are very good with specific issues that are difficult to deal with when the doctors shrug their shoulders. Others most likely will jump into this discussion in time. Patients and courage in the meantime. It looks like you have good care.

Jump to this post

Did it take awhile for bloodwork to go back to normal? My husband is concerned as some is low and some is elevated, it’s been three months since last treatments. Still can’t gain much weight. Next week is pet scan, wish I knew it was going to be ok, all the waiting.☹️

REPLY
1 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jun 2 9:05am
In reply to @cris2 "Did it take awhile for bloodwork to go back to normal? My husband is concerned as..." + (show)
@cris2

Did it take awhile for bloodwork to go back to normal? My husband is concerned as some is low and some is elevated, it’s been three months since last treatments. Still can’t gain much weight. Next week is pet scan, wish I knew it was going to be ok, all the waiting.☹️

Jump to this post

Actually when it came to bloodwork, the radiation bruised my thyroid which resulted in a thyroid storm. After more than a year it settled out. I have been on meds to knock down an overactive thyroid for twenty years now. It’s minor but still it is a common issue from radiation. Many doctors and patients fail to check TSH levels which basically contribute to overall feeling well.

REPLY
knb2010 | @knb2010 | Jul 15 4:02am

Hello Sir @hrhwilliam my wife 3 months follow up result post surgery and CT/RT. Case- Lymphoepithelial carcinoma right parotid.
1) MRI + Pet Scan - Clean & Clear
2) LFT + KFT + TSH Levels - good
3) Weight loss - 50 % recovered.
4) Side effects - muscle pain, stiffness, fatigue.
5) Food - Normal

Planning - Physiotherapy

Any Suggestions ???

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jul 15 6:02am

The side effects most likely will take months if not years to overcome. There has been a lot of damage done. Most of us experienced finally getting used to side effects seems to be when they start subsiding. Personally I have never returned to pre cancer normal.
Stay the course. I know you are a long distance from your doctors, which doesn’t make it any easier however there are alternatives such as tele-health or messaging through the medical portals.
Measure progress week over week and month over month and for some, year over year. Is she better this month than last? Is she better this week overall than previous? Cancer! We could all live without it. That’s for sure.

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