Side affects of Radiation / List up-date

Hi Everyone,  I am two years out from a radical neck disection and 7 weeks of radiation and have been so scared lately because I have many remaining symptoms and they keep changing.  One day my mouth is dry as a bone and the next day I am numb under my jaw. The next week I'm having intense shoulder pain, etc.....  My surgeon says everything is fine, but of course he's not concerned about "quality of life" issues.  It's so helpful to see your lists of symptoms and although I'm so sorry to know you are all going through this, I'm so very relieved to know I'm not alone.  Glad to be alive and grateful that I've found this group.

Sodium lows causing you to ingest sodium pills, large which make your mouth dryer.  Have to be tested every 2 weeks to see where I am at.  Had a stroke since it drop overnightso Low caused seizure than stroke & I started into a coma state.  So exhausting trying to manage it, effected my taste & getting harder to swallow.  I am 2 1/2 yrs NED but doesn’t get better.  Have to drink special enzyme water, very little water, depletes salt in your pee, they have me on so many prescription drugs it’s ridiculous.  Sorry, travel, eating out ( so limited), having little sleep since I pee throughout the night, so very exhausted most of the time, they can’t get my thyroid right hypo right now, Salivary Glands were cleaned out but only produce horrible saliva that they call Chemo Saliva, mucus, this is no living, it’s surviving one day at a time & miserable most of the time.  Cant enjoy much of anything any more.   Drs are stumped on what to do for me.  One nurse recommended trying Mayo to see if they can help?

Darkdancer333 said:

One i have not read is I have

One i have not read is I have fluid in the morning under my chin. I look like a bull frog...........

Thing I have the most problem is I am 4 months post radiation and the mucus still persists

The fluid under your chin is lymphedema.  Sleeping with some elevation to this area should help it drain and maybe not so prominent in the AM.  I imagine as the day goes on, the law of physics takes over and it drains on its own.  There are support groups, and further information ie tips and education on this site, and through your team.  Best regards... StillStrong

ekdennie said:

side effects
as my radiation was a little higher, my palate and sinuses. the side effects I was told to watch out for were: dry mouth, thick mucous, sores on my skin, dry skin, eczema, memory loss, slowed reactions, lack of focus, confusion, apathy, hearing loss, vision changes, dry nose, sores in mouth, throat, or nose, headaches due to radiation and/or infection, hairy tongue (from lack of food), loss of voice, loss of ability to swallow, sore jaw, which could lead to inability to open jaw, new allergic reactions to food and/or environment, chills (from loss of weight), weight loss, weight gain, swelling on face, jaw, or neck, tooth decay from lack of saliva, tender gums (from lack of saliva), fatigue, bursts of energy followed by extreme fatigue, decreased immunity to colds and infection, slower healing in areas of radiation, moist skin (which needs to be seen by dr immediately...where the skin feels wet), blisters, hair loss (possibility permanent), change in sense of taste, change in sense of smell, other tumors, nausea, vomiting and irritability and depression.
I was told that there could be other side effects that were less common.
hope this helps. I may have forgotten a couple...but I think this is most of them!

I'm at 5 yr point and have just about everything now on your list but I got sodium lows from Chemo caused a stroke. 2 yrs later.  Was hanging in till 3 yr Mark and body said I've just had enough side effects.  Its been miserable for the last few yrs and so much mucus & actual thing permanent Chemo Saliva thick, gooe, sticky mucus instead of reg saliva.  Have seen othe Specialist for help can't do anything it's permanen.  My Chemo Dr gave Me 2 for stage 1 skin in left side of throat very tiny patch.  Had for 3 yrs all Drs blew it off as irritation so traveled lots to Europe walked miles, ate fine, drank never a problem.  Went to an ENT for yr round allergies live in tropical area of Fl by suggestion of Internist came out biospied patch & found Cancer.  Got the usual barbaric treatments but 2 drugs & fully blasted Rads on old machine.   Amazed kept saliva thru it all & needed a feeding tube due to throat burns.  Nose to collar bone blasted 7 weeks couple times 3rd degree burns but worked a lot on keeping throat area moist clean all natural products but 100s of sore in mouth burned daily need Feeding tube to get nutritional natural shakes in.  Thankful for new Dentist and his lazer helped with sores on tongue " burning tongue syndrome" by deading nerves.  Forgot your skin may look great at first since like a chemical peel fro Rads but ages you fast & often look 10 yrs old than you are sometimes more.  Unless your a total skin fanatic, which I'm not.  Lost thyroid still after yrs can't regulate properly, hearing & now noise intolerance but can't repair canals too scared to get instruments in, losing sight slowly can't see without glasses which get stronger yearly, nose can't sneeze, blow even with horrible allergies just drains gunk into mouth via back of throat.  Mouth constantly tastes disgusting from all the mucus., still get mouth sores from Chemo Saliva have to use magic mouthwash, no taste so everything smells different and very hard to eat & swallow (scared throat) so going out to eat hard usually can't eat anything on menu.  The stroke caused 3 concussions in the same yr.  brain now shot & can't remember a thing and use to have an excellent memory.  Should never have taken treatments at small center go to large better one after all only stage 1 tiny nickel size patch of skin SCC HPV 16+ but had good health & ton of energy endless.  Hell what's the difference body fighting HPV virus or Covid & variants viruses & immunity healing itself.  Most I know very healthy and no vaccine yet but than there's Me stuck home basically waiting patiently for vaccines since they killed My great immunity.  Otherwise think We got it .  Never told a thing by Drs and now could care less to see Me for 5 yr check off. Still upset I called him (Chemo) on Sodium I have to go for private IVs to manage rest of life.  Found out he knew less than 1/2 way thru what the one drug was doing but didn't do a thing about it.  Found out when got all my records to take to Mayo here in Fl saw as numbers went down and he tried to say you were low to begin with and I corrected him said got all the test results started high and went down & you knew but told Me I was fine.  Never trust  a Dr you have a gut feeling not being up front with you.  Oh don't forget neuropathy.   Got bad in fingers of 1 hand hard to use iPad fingers so numb.  Pen pain to use & hold.  Think We covered it.  Makes for a positive future to look forward too.  

BrianKrashpad said:

side effects
It seems the list is endless, dunnit?

I'm sure that the headaches I'm getting are related to the radiation, but my zap doc pooh-pooh'd that as unrelated, even though these headaches are unlike my typical headaches. According to him they are due to stress or something else, but not the radiation.

In the end I guess it doesn't matter what causes them. I'm pretty much staying doped up for the next couple weeks either way.

Good luck and take care.

Be well!

I get those headaches too.  Different than reg headache & not a migrain.  He's BSing you

Hondo said:

Hi John

I am not sure why when I read Lynn post my mind was seeing Lymphoma not lymphedema, I hate having this dyslexia crap it makes me read things that are not there depending on how my brain what’s to see it.

Sorry Lynn but John is right I too had the Turley Neck thing and still have a little of what was left behind..

Hondo

I just joined this support group today. I was diagnosed with squamous cell carcinoma in my lower left jaw area. I had surgery on December 10th to remove that portion of my jaw and reconstruct it using a bone and blood vessel from my leg along with a titainium plate. I started radiation on January 11th and have just completed 28 of 46 tratments. Mu oncologist told me that I am doing great with hardly any side effects. I have had dry mouth since sugery and it has gotten worse. My neck area is swelling from the neck dissection and removal of 93 lymph nodes during my surgery. I am concerned about what I should be doing to prevent any more discomfort from a possible case of Lymphedema.

Does anyone have any suggestions?

Hi Tom, I was wondering what ever happened with this? I just started experiencing this myself after 19 year out.