Side affects of Radiation / List up-date

Ruth Dorothea · March 2018

Thank you so much.

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.

Kohlertom99 · March 2018

Lip and chin numbness

hi all

im new to the forum and read through everyone’s side effect. I am 5 1/2 years out from IMRT and chemo for base of tounge cancer. Have many of the side effects stated. Most recent is numbness and tingling/ itching in the chin and lip area on my right side where my radiation was.

any thoughts my GP did say a nerve runs along the jaw line where radiation could have damaged

any input would be helpful.

Thanks Tom

Drivingdaisy · September 2018

Here’s one not listed

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 · September 2018

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

StrongLikeAGurl · October 2018

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

Hi Darkdancer

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

StrongLikeAGurl · October 2018

Drivingdaisy said:
Here’s one not listed
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?

Drivingdaisy

Hi there. Sorry of your difficulties. I discovered accidently that Coconut Oil helps me in So Many ways and applications. My skin is Soft, I massage it twice daily (am & pm), it Definately reduces the tightness I feel to my radiated areas! I also apply it orally after my cares, all over, around my teeth, all surfaces....it feels moisturizing and "normal" to me. I also have been Blessed to have Pilocarpine, a side effect of which is increased salivary production. It Helps me tremendously. Not "normal" saliva, but far better than none. Also to consider is your medications and any unwanted side effects from them. Many doctors are aware of well known, yet the PDR has a host of info re this. God Speed to you and Prayers for solutions!

PS Nurses often have great insights. She went out on a limb suggesting this to you. She understands more of what she witnesses ie

, Dr temprements, abilities, strengths and weaknesses. Might be an angel talking to you!

Drivingdaisy · February 2021

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!

Think you got most especially Me

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.

Drivingdaisy · February 2021

terryscarlett said:
side effects
No, we get the same answer, takes time, radiation takes time to heal, blah, blah, blah, blahhhh. I get tired of spending good money to hear we don't know, to takes time, you are a mystery case, never seen that, so on and so on. Makes you wonder sometimes what is the point of follow up if you can't get any answers to problems. Hope you are doing well Honda.
Dave had a good day yesterday was able to eat his first real meal in over 5 months now, but today he is back to the tube. His throat fills swollen shut on him again and the dreaded thick mucous... It is very depressing for him and myself at times. You think you have turned a corner only to find you have stepped backwards 3 steps. Time, time, and more time, is all you get. Have a wonderful day! wow.....

I agree

I hear that 1 more time going to go insane. Everything wrong with Me treatments induced. Wow never ending either. Lisa

Drivingdaisy · February 2021

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!

He’s covering his butt

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

motorcycleguy · February 2021

Hondo,

I see this post was from 10 years ago - and certainly I hope most of these side-effects have long since faded for you.

I'll list my experience, to see if it can be helpful to others:

I can very honestly say that the scenario that my Radiation Oncologist laid out for me (stringly saliva, lots of pain etc.) weren't nearly as bad as the reality of my treatment.

When she asked about pain, I always had the same answer "1, maybe 2 (on a scale to 10) ... like maybe a sunburn."

I know everyone is different, and I probably had it much easier than most. This may be due to growing up on a farm - and getting lots of sun as a kid. My skin may have been used to fighting!

I hope everyone finds that radiation is easier than expected, and whether or not that's the case - that it's effective to stop your Cancer!

mg

cap22 · March 2021

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

Lymphedema

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?