Side affects of Radiation / List up-date

Hondo · November 2011

Crazymom said:
Side effects
After reading that you have these side effects six years later, it makes me wonder if I really want to do Chemo/Rad. I don't know how you have done it Hondo. This sounds terribly painful and that is does not seem to go away.

Ann

Hi Ann
Yep I have a lot of pain and problems but remember I been radiated twice and then got a very bad Mastoid infection on top of everything, mainly the reason for all my problems and pain. But somehow when I look at it and realize I enjoy being here to see my grandchildren grownup; it makes it worth all the pain.

With you doing Rad and Chemo only once you should pull through it with flying colors, believe me it is very well worth it for them.

God bless and keep you in his care
Hondo

Sam44646 · February 2013

Secretgardentour said:
Side affects of Radiation / List up-date
Side affects of Radiation / List up-date

1. Weakness
2. Weight loss
3. Headaches
4. Loss of Hearing in both ears
5. Loss of seeing going blind in both eyes
6. Sinus Infection
7. High Blood Pressure
8. Low Blood Pressure
9. Memory loss
10. Mouth Dryness
11. Teeth Problems
12. Jar problems
13. Skin irritation
14. Constipation
15. Loss of Sex desire
16. Walking into the walls
17. Problems eating
18. Problems swallowing
19. Problems sleeping
20. Loss of Gum Tissue
21. Nerve pain w/head movement (L'Hermitte's Sign)
22. Camker sores
23. Facial pain in rad areas
24. Severe Fatigue
25. Loss of taste
26. Cough and constant dry tickle
27. Thyroid issues
28. Immobility issues with neck. Radiation over scar from neck dissection makes it even tighter.
29. Mouth sensitivity
30. Scarring in esophagus and or stricture.
31. Edema
32. Loss of skin resilance on radiated areas.
33. Scalded tongue
34. Major Wax Build Up in the inner ear
35. Ear Infections
36. Sore Throat
37. Mucus Build Up
38. Permanent voice alteration
39. Lethargy/activity intolerance
40. Deterioration and loss of bone matter in skull and sinus cavity.
41. Erratic heart beats (PVC's)
42. Complete stoppage of the stomachs digestive function.
43. Complete stoppage of the colon and small and large intestine "nerve to muscle"
function.
44. Erratic "nerve to muscle" function of colon and intestines.
45. Peristaltic movement failure
46. Chronic intestinal blockages.
47. Chronic malnutrition.
48. Chronic bleeding out of mouth with unknown cause.
49. Weakening of lung function.
50. Excessive skin loss to throat and neck and scaring
51. "Brain, spinal cord or nerve damage causing alteration of thinking ability or memory, and/or loss of strength, feeling or coordination in any part of the body." That is a direct quote from the written information we were given
52 - necrosis from radiation any where in the zone
53 - depression do to slow recovery and not getting back to same as before normal
54 - anxiety
55 - daily reminders weather the cancer will come back and what are options if it does
56 - loss of friends you thought we friends/loss of family you thought we family
57 - loss of options for heath insurance providers
58 - high risk of job loss or being able to do job required
59 Muscles cramp
60 Problem speaking
61 Problem driving
62 Blood shot eyes

HELP! - Facial Spasms

Whew.................. So I might have lost track at 62 and counting but I didn't see a response for my latest gift from my radiation treatments. I too did chemo and rad. About 21 months out from treatment and I'm experiencing facil spasms on the left side of my face (where most of the radiation was). Started about 2 months ago as muscle cramps running from my cheek to my neck. Now they are confined to my left jaw, very strong, uncomfortable and are affecting my ability to talk during one. I've heard about accupuncture. Will that help? Any ideas? These are really driving me to the edge..................................

fisrpotpe · February 2013

Sam44646 said:
HELP! - Facial Spasms
Whew.................. So I might have lost track at 62 and counting but I didn't see a response for my latest gift from my radiation treatments. I too did chemo and rad. About 21 months out from treatment and I'm experiencing facil spasms on the left side of my face (where most of the radiation was). Started about 2 months ago as muscle cramps running from my cheek to my neck. Now they are confined to my left jaw, very strong, uncomfortable and are affecting my ability to talk during one. I've heard about accupuncture. Will that help? Any ideas? These are really driving me to the edge..................................

Gift

welcome Sam44646, sorry you have had to join us because of the problems you are having.

i did not have facial spasms but i did have neck spasms for many many years, i checked with doc's, had physical therapy try to help me, tried warm and cold treatments with no help. doc's just look at me with the look of just do not have a guess for you.

my experience from the side effects from the gift (radiation ) that keeps on giving is time. i have many different cramps, pains and spasms and the only fix i found was time.... ha you say. well 17 years ago were my treatments and about 3-5 years ago most all of the challenges i was dealing with went away with time. so my answer would be time and to learn to accept what you have.

wish i had a better answer for you and fix, but that is all i found that worked for me.

by the way you would probably get more reply/activity to your post if you started a new post, most of the time replying to older posts for some reason do not get the same attention as for me i see i have posted already and more on to the next post for other problems

prayers going out that your can find anything to help some or all of the problems you are dealing with

john

kinco · January 2016

Shoulder pain

I had same problem with shoulder pain. Could barely lift my left arm.

Dr. prescribed phys. therpy. Did so about 4 months after surgery.

Did 4 treatments before end of year, then new deductible begins so I stopped.

The shoulder muscles are injured during the neck dissection, not from radiation.

Take heart, it WILL get better!!! Be sure to use it as much as you can stand to avoid

frozen shoulder!!!! Good luck my friend!

kinco · January 2016

timreichhart said:
about the side effects
See I am starting to be like Hondo starting to have late side effects from radiation now I am dealing with this: shoulder problem on right side where lymph node was taken out, neck problems,jaw problems,ear problems and losing more hair in the back and also dry mouth. Every time I ask about the doctors dont have a freaking clue what the problem can be and they always say its muscles or something with treatments can be causing this. I mean what freaking gives here?

Thanks Tim

hang in there man!

I had same problem with shoulder pain. Could barely lift my left arm.

Dr. prescribed phys. therpy. Did so about 4 months after surgery.

Did 4 treatments before end of year, then new deductible begins so I stopped.

The shoulder muscles are injured during the neck dissection, not from radiation.

Take heart, it WILL get better!!! Be sure to use it as much as you can stand to avoid

frozen shoulder!!!! Good luck my friend!

kinco · January 2016

charles55 said:
list
38. Permanent voice alteration
39. Lethargy/activity intolerance

Please expand on #38

I'm 3 mos. out from 10 rad treatments and my voice is changing. Something putting pressure on voice box...

jackflash22 · January 2016

Radiotherapy side affect.

can I add premature aging. My skin around the radiated area became so dry wrinkles appeared in just that area, my mouth is also tightening they weren't there before the radiotherapy. I have a wrinkle free forehead and cheeks but around the mouth I've become like a prune.

Old_blue · August 2016

Survived Leukemia MDS then AML now it's SCC of the pate

hi, I am new, first post. I an five year post stem cell transplant. Have CGVHD which left me open to SCC, after 26 cuttings on various surfaces one got too big so now it is radiation. It s on my head part way through my skull. I start radiation next Mondpay and thought I should interact with some people with experience. So I am reading your posts to get some concentrated experience from the source. Just saying.

Old_blue · August 2016

palmyrafan said:
Pituitary Gland Issues
Well that would make sense then for the pituitary gland. I had 30 sessions of IMRT radiation 15 years ago and it almost destroyed my hypothalmus and my pituitary gland. I am just now seeing issues and side effects related to my pituitary gland. Underactive adrenals and a low thyroid both requiring medication, probably for life.

Thanks for posting this list everyone. I can see how it might appear daunting to a newbie just starting out, and yet it can also give them a sense of relief that they aren't imagining what is going on.

Hi PalmyrafAn, I am about to

Hi PalmyrafAn, I am about to go through IMRT for my top of head.

Wondering where you tumor was located?

CivilMatt · August 2016

Old_blue said:
Survived Leukemia MDS then AML now it's SCC of the pate
hi, I am new, first post. I an five year post stem cell transplant. Have CGVHD which left me open to SCC, after 26 cuttings on various surfaces one got too big so now it is radiation. It s on my head part way through my skull. I start radiation next Mondpay and thought I should interact with some people with experience. So I am reading your posts to get some concentrated experience from the source. Just saying.

welcome

Old_blue,

Welcome to the H&N forum, sorry that your trail led here.

Most of us with SCC have it in the mouth, tongue, soft palate, ect… not to many in the skull. Out of curiosity, where on your skull?

We have something to add to your cancer repertoire, but may I suggest that you start a new thread and introduce yourself. These older threads cannot guarantee much of a response.

Good luck,

Matt

Mickg01 · August 2016

Secretgardentour said:
Side affects of Radiation / List up-date
Side affects of Radiation / List up-date

1. Weakness
2. Weight loss
3. Headaches
4. Loss of Hearing in both ears
5. Loss of seeing going blind in both eyes
6. Sinus Infection
7. High Blood Pressure
8. Low Blood Pressure
9. Memory loss
10. Mouth Dryness
11. Teeth Problems
12. Jar problems
13. Skin irritation
14. Constipation
15. Loss of Sex desire
16. Walking into the walls
17. Problems eating
18. Problems swallowing
19. Problems sleeping
20. Loss of Gum Tissue
21. Nerve pain w/head movement (L'Hermitte's Sign)
22. Camker sores
23. Facial pain in rad areas
24. Severe Fatigue
25. Loss of taste
26. Cough and constant dry tickle
27. Thyroid issues
28. Immobility issues with neck. Radiation over scar from neck dissection makes it even tighter.
29. Mouth sensitivity
30. Scarring in esophagus and or stricture.
31. Edema
32. Loss of skin resilance on radiated areas.
33. Scalded tongue
34. Major Wax Build Up in the inner ear
35. Ear Infections
36. Sore Throat
37. Mucus Build Up
38. Permanent voice alteration
39. Lethargy/activity intolerance
40. Deterioration and loss of bone matter in skull and sinus cavity.
41. Erratic heart beats (PVC's)
42. Complete stoppage of the stomachs digestive function.
43. Complete stoppage of the colon and small and large intestine "nerve to muscle"
function.
44. Erratic "nerve to muscle" function of colon and intestines.
45. Peristaltic movement failure
46. Chronic intestinal blockages.
47. Chronic malnutrition.
48. Chronic bleeding out of mouth with unknown cause.
49. Weakening of lung function.
50. Excessive skin loss to throat and neck and scaring
51. "Brain, spinal cord or nerve damage causing alteration of thinking ability or memory, and/or loss of strength, feeling or coordination in any part of the body." That is a direct quote from the written information we were given
52 - necrosis from radiation any where in the zone
53 - depression do to slow recovery and not getting back to same as before normal
54 - anxiety
55 - daily reminders weather the cancer will come back and what are options if it does
56 - loss of friends you thought we friends/loss of family you thought we family
57 - loss of options for heath insurance providers
58 - high risk of job loss or being able to do job required
59 Muscles cramp
60 Problem speaking
61 Problem driving
62 Blood shot eyes

5+ years in after Radiation

5+ years in after Radiation only for Vocal Chord cancer.

The only long term symptom I'm experiencing almose every day is #59, muscle cramping in the neck. Usually in the middle of a conversation or meeting.

jackflash22 · August 2016

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!

side affects

pins and needles from neck to ear. Like a nettle sting that's dulling down. Wooden neck

Old_blue · August 2016

SCC position

The SCC is top dead center on the top of my head.

PamelaDee88 · January 2018

Side Effects

Hi I'm a newbie here and see that all of these posts and comments are from 2011 so I'm TRULY hoping that I can get some help. It's January 2018 and it's been a year since I was diagnosed, had surgeries, chemo and 38 radiation treatments for 3d stage laryngeal cancer. I have severe headaches , ear pain, thick mucous stays in the back of my throat, constant ringing in my ears, my ears have some substance that runs out of them when I first wake up, hypothyroidism, dry mouth with a constant horrible taste in my mouth, and most of the other symptoms that others posted on here. My ENT as well as my Oncologist find other reasons for what all is going on with me. If someone could PLEASE help me I would sincerely appreciate it. I have an appt with my Onc Dr tomorrow and would just like to know what to say to him because he acts like he's baffled when I talk to him about these horrible side effects. Thanks in advance ♥

PamelaDee88 · January 2018

Side Effects post H & N cancer

Oh I meant to add that my headaches are either blamed as being migraines or due to stress I've had both in the past a few times but these headaches are constant and the pain radiates under my ears (cancer was in both lymph glands ) and sometimes it moves into my shoulder area. The doc's act like I'm overreacting which makes me feel stupid and seem to think that by now I shouldn't have any side effects. I also wanted to say that the stuff that runs out of my ears when I first wake up is runny and sticky. I can't taste food therefore I'm unable to enjoy eating. I weighed 134 when I was first diagnosed and went down to 102 so they had to insert a feeding tube in me. I still have problems eating due to both no appetite since I can't taste my food and what soft food I can get down me runs back up my throat. I stay so tired but feel nervous all of the time, my neck looks like it's aged 20 years (I don't like it but it's the only side effect I can deal with ) and just SO much more. I apologize for posting 2 messages back to back but just trying to add as much information as I can

Curlyn · January 2018

That fact is, if people were

That fact is, if people were told this in advance, and told it was their one shot, they'd still do it. The docs tell us what they think is important to know but sometimes there really are no answers, and they simply don't know because it hasn't happened to them. I forgive them because they saved my life and huddled around me protectively until I was ready to fly on my own (mostly, ha ha). As for the scary carotid blowout, it's known that the carotid is resiliently resistent to radiation ( but not entirely) and they try to avoid injuries to carotid in the personal radiation care plan. One thing for sure, if we did nothing, there would be many major vessel blowouts as cancer eats through them, and this applies to every and any cancer. Matt posted on another thread today about a " self imposed prison of side effects" and I have been guilty of that. It made me think. I choose to enjoy what function I have left. And I look to the 'old timers' here to continue to help me with their expertise and words of wisdom. That said, it sucks for all of us and maybe the list could be compiled on the Superthread for those who want to read it or contribute. Lastly, there are millions of people walking around c cancer and don't yet know it. We have at least been forwarned! Thanks Hondo!

dwp155 · February 2018

Thankful

Yes it sucks to be us, that being said I would do it all over again. I feel blessed to have been given a second chance at what life I have left. My "team" told me about all of it and like said earlier I chose to hear only what I wanted. 42 radiation treatmentments, 6 cisplatin completed 2 months ago and I feel "pretty good." Sleeping 12 hours a day walking 15 minutes, yoga twice a week and I didn't need a pain pill or a peg. There is plenty going on - ears ringing, sores pop up, taste is iffy, saliva low, hair and beard loss, tender skin, but I choose the positive side of life. If I sat around dwelling on what was wrong I would continually miss out on what is going right. Like I said it sucks!, but God is good and so is life so try to be thanful and use the site to get through the problems. Together we can accomplish anything.

Mavish · February 2018

Few .ore few more

72 mouth ulcers.

73 osteoradionecrosis

74 isyets in the mouth

jjaj133 · February 2018

Possible cancer in parotid nodule

Hello everyone, I am seeking information. I have a long history of colon cancer with mets going all over the place. 12 years and am still fighting. my last pet scan showed its back in the adrenal after surgery 5 months ago. It also showed 'Persistant metabolically active left parotid nodule". I am seeing an ENT next week. My doctor will not give me any information, other than its probably not colon cancer metastasis. It is unusal for him to not be more specific. I'd like to be as prepared as i can. I'm thinking medibolically active means cancer, can anyone shed some light on this for me. thank you.

FamilyLove · February 2018

PamelaDee88

Hi. I'm sorry for all you are going through. I had stage IV throat cancer. HPV positive. It has been two years since I was diagnosed and in April it will be two years since end of treatment. I had a feeding tube put in about three weeks in. I lost 50 pounds. I have yet to gain more than 5 pounds back. It was very hard to get any nutrition because I coundn't eat. If I tried to drink water it would come back out. I had a swallow test and they found that I had a stricture in my throat. My throat had closed up which is rare according to my ENT. I am doing extremely well now. Back to eating (mostly soft foods still) although things are still bland at least I can eat. I also had ringing in my ears for a long time but that has gone away. It took me nearly a year to get my energy back. I still get tired easier than I did before but I have thyroid problems and that will make you tired too. I would compare my recovery to others and get depressed. But alas I did get better and you will too. Hang in there. Keep asking questions. Only you know how you feel. Best of luck. Praying you feel better soon.

Side affects of Radiation / List up-date

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