Side affects of Radiation / List up-date

Secretgardentour

Hondo said:

Hi Everyone
Thanks for all the info, I like Kent’s idea to make a list but don’t want to call it Hondo’s List, just something we can all have to understand what the doctors don’t tell us, so far this is the side affects I am having.

Radiation Twice and Chemo once to the Head & Neck for NPC, I am right at 8 years from First Treatment and 6 year from Second

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

Please add to the list if you like

Thanks
Hondo

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

asiaamy

Hal61 said:

Fatigue
Hi Mike, good to see your post. Yeah, the fatigue is something else, different than being just tired. Mine persisted for about four months out of treatment more or less. It went away farily quick when it happened, maybe within a two-week period. It will go away for you pretty soon. I have the ringing also, mine from Cisplatin, which is better known for causing it than Carpolatin. For many the tinnatus is temporary. I'm trying acupuncture for it right now, and have had no result after three or four treatments. I have first-hand knowledge of a couple of the better known pill cures, Arches Tinnitus Formula, and Quietus, and had no result whatsoever with them. Three months out, your body still has healing and improvement it will make for sure.

best, Hal

One more
An extremely scary list for newbie here who just did her 11th round today (no Xanax yet but singable abba songs and going to try dark sock over eyes on top of mask tomorrow but doubt it's going to work those flashing lights super bright) and still has 25 more to go....

Just one that my dr told me that is linked to sex drive on hondo original list - pituitary gland issues longer term.

RayTodd

fisrpotpe said:

do not
I do not and I am not sure anyone is keeping track over the years and everyone reacts differently is some ways.

What kind of problems have you asked that they responded this way.

John

the Tat
What cancer ribbon is that i am a novice to all thos

fisrpotpe

RayTodd said:

the Tat
What cancer ribbon is that i am a novice to all thos

Color's
Maroon and White are the color's used for head and neck cancer. The tattoo is for support for all those fighting the fight and caregivers who are endless in their love and support for the survivors.

I used it from the Survivors of Head and Neck Cancer group on Facebook and shortened one side for my hand.

just something i felt like doing

John

BarryD59

oopsydoopsy said:

Talk to me about #21
I've been feeling and experience,, unvolunteraly movement for my neck or head,, I am not sure,, but it moves by itself when I am on certain position like doing yoga with my head down on the floor,, it moves like I am shaking it,, weird and funny feeling or I feel my nerves is pinching me from left front neck to right neck,, is that L'Hermitte's sing? is that dangrous?

thank u

Neck muscle twitching/ head shake
Its been 3 years since treatment [Chemo and Rads no surgery] and i have just recently been experiencing what feels like involuntary head shaking. I think its moving but i am told it is not obvious to others. At first i thought it was the start of parkinsons. I have since found that the main muscles on each side of the neck are twitching involuntry most of the time and can be easily seen. I am in the process of trying to track down a way to stop the twitching. Yes it is annoying but it only is noticeable to me when i am not occupied. I am trying Chiro but it is not having any effect. There has not been much discussion on this type of neck twitching and wondering if anyone else is experiencing this and if anyone has found a solution.?

palmyrafan

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

Add a couple of more
63. Loss of taste, smell, touch, hearing or vision (hopefully not all at the same time)
64. Worsening of IBS or Crohn's
65. Weakness or paralysis on one side of body or affecting a certain area
66. Inability to return to work
67. Losing control (occasionally) of an arm or leg which insists on doing its own thing.

I apologize if these are repeats from above, I looked and I didn't see them listed.

Someone needs to show this list to a neurosurgeon and a radiation oncologist as well as the chemo docs. I think they would be surprised at what they are reading.

palmyrafan

Kent Cass said:

Yes
Yes, Judy- it is fantastic. Fortunately, a number of the listed side-effects are temporary-
we experience only during the treatment, and/or a little while after, but in time go away. I was hoping for a list of just the post-treatment side-effects, as during treatment it's "come what may." Scalded tongue, for instance, which I do remember well, but is not part of my life after. Yes, Judy- it is fantastic to be alive.

kcass

Radiation
I wish my radiation (IMRT) side effects would have gone away, but they didn't. In fact, some of the worst ones have just now shown up 15 years post-radiation treatment. The rad doctors aren't surprised though. They all told us (and still do) that sometimes it can take years for radiation side effects to show up. It took 15 years for my thyroid to go "kaplooey" on me and start showing problems.

SIRENAF42

asiaamy said:

One more
An extremely scary list for newbie here who just did her 11th round today (no Xanax yet but singable abba songs and going to try dark sock over eyes on top of mask tomorrow but doubt it's going to work those flashing lights super bright) and still has 25 more to go....

Just one that my dr told me that is linked to sex drive on hondo original list - pituitary gland issues longer term.

Early and Late side effects from radiation
http://www.leiomyosarcoma.org.uk/raddiscuss.htm#areahead

I found the information on this site to be helpful when discussing how radiation effects different parts of the body.

Skiffin16

BarryD59 said:

Neck muscle twitching/ head shake
Its been 3 years since treatment [Chemo and Rads no surgery] and i have just recently been experiencing what feels like involuntary head shaking. I think its moving but i am told it is not obvious to others. At first i thought it was the start of parkinsons. I have since found that the main muscles on each side of the neck are twitching involuntry most of the time and can be easily seen. I am in the process of trying to track down a way to stop the twitching. Yes it is annoying but it only is noticeable to me when i am not occupied. I am trying Chiro but it is not having any effect. There has not been much discussion on this type of neck twitching and wondering if anyone else is experiencing this and if anyone has found a solution.?

Welcome Barry
Welcome to the forum Barry....

Sorry for your situation....I don't remember anyone mentioning this before, but doesn't mean it hasn't been.

I'm sure some others will chime in soon.

You might want to start a new post for yourself as this original topic is pretty old...and it would be easier for yourself and others to concentrate on you and your question.

Also, look for the SuperThread post put up and updated frequently form Sweetblood22. It's a compilation of information and links associated with H&N treatments and recovery.

Best,
John

Hondo

SIRENAF42 said:

Early and Late side effects from radiation
http://www.leiomyosarcoma.org.uk/raddiscuss.htm#areahead

I found the information on this site to be helpful when discussing how radiation effects different parts of the body.

Hi Sirenaf

Thanks you very much for the information, now I understand a little bit better why all the problems.

Hondo

palmyrafan

asiaamy said:

One more
An extremely scary list for newbie here who just did her 11th round today (no Xanax yet but singable abba songs and going to try dark sock over eyes on top of mask tomorrow but doubt it's going to work those flashing lights super bright) and still has 25 more to go....

Just one that my dr told me that is linked to sex drive on hondo original list - pituitary gland issues longer term.

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.

ToBeGolden

Visual Field Disturbance Link to Pulse Rate
A year after rad for vocal cord C, I've developed a visual disturbance. With each heart pulse, my visual field "jumps". It is a little disorienting. I have severe cataracts, which may be contributing.

Actually, I don't think this is a post-radiation symptom; but I just need to mention it. I need to find others with similar symptoms if possible.

Also my C may be back; I'm having a biopsy in a couple of days. If it's back, I'm determined to fight it off once again. Rick.

Noellesmom

ToBeGolden said:

Visual Field Disturbance Link to Pulse Rate
A year after rad for vocal cord C, I've developed a visual disturbance. With each heart pulse, my visual field "jumps". It is a little disorienting. I have severe cataracts, which may be contributing.

Actually, I don't think this is a post-radiation symptom; but I just need to mention it. I need to find others with similar symptoms if possible.

Also my C may be back; I'm having a biopsy in a couple of days. If it's back, I'm determined to fight it off once again. Rick.

Hmmm...
the visual field jumping with the heartbeat...sounds a little familiar.

Do you, by chance, have high blood pressure? Even if never diagnosed, find a machine and take your blood pressure, if possible, in both arms.

Hope you have mentioned this symptom to your doctor.

Hondo

ToBeGolden said:

Visual Field Disturbance Link to Pulse Rate
A year after rad for vocal cord C, I've developed a visual disturbance. With each heart pulse, my visual field "jumps". It is a little disorienting. I have severe cataracts, which may be contributing.

Actually, I don't think this is a post-radiation symptom; but I just need to mention it. I need to find others with similar symptoms if possible.

Also my C may be back; I'm having a biopsy in a couple of days. If it's back, I'm determined to fight it off once again. Rick.

Hi Rick
Sorry to hear of the possibility of the C coming back. Hang in there; I also had my NPC come back a few times so I know the feeling. On the vision problems I had it a few times was caused by excess fluid buildup on the brain. The doctors put me on Diamox for a few months and I have not had any more problems with it.

Wishing you the best with your biopsy
Hondo

Skiffin16

ToBeGolden said:

Visual Field Disturbance Link to Pulse Rate
A year after rad for vocal cord C, I've developed a visual disturbance. With each heart pulse, my visual field "jumps". It is a little disorienting. I have severe cataracts, which may be contributing.

Actually, I don't think this is a post-radiation symptom; but I just need to mention it. I need to find others with similar symptoms if possible.

Also my C may be back; I'm having a biopsy in a couple of days. If it's back, I'm determined to fight it off once again. Rick.

May Be Back
Stay positive buddy....until they say that it's back, you don't know for sure.....you don't need the added stress.

Best,
John

lynn316

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

one more
lymphedema and not finding a doctor to treat it

Hondo

lynn316 said:

one more
lymphedema and not finding a doctor to treat it

Hi Lynn
Sorry to here you got this stuff, my brother had it about 12 years ago. He died but not from the lymphedema but from a bad staff infectionhe he got. If you are looking for a good doctor go to MD Anderson or Mayo Clinic, I think they are the best.

Wishing you well and welcome to CSN
Hondo

Skiffin16

lynn316 said:

one more
lymphedema and not finding a doctor to treat it

Turkey Neck Club
Welcome Lynn, actually around here we call that being a member of the Turkey Neck Club. It is pretty funny that it wasn't mentioned above, LOL....though edema was mentioned.

L'Hermette's Syndrom is another side effect that we often get after radiation. Both seem to kick in around the 2nd - 3rd month post rads. But also both seem to pretty much go away within the first 9 - 12 months.

On the SuoerThread there is mention of both and massage therapy and techniques that might give some benifit and relief.

Again, welcome to the club...

Best,
John

Hondo

Skiffin16 said:

Turkey Neck Club
Welcome Lynn, actually around here we call that being a member of the Turkey Neck Club. It is pretty funny that it wasn't mentioned above, LOL....though edema was mentioned.

L'Hermette's Syndrom is another side effect that we often get after radiation. Both seem to kick in around the 2nd - 3rd month post rads. But also both seem to pretty much go away within the first 9 - 12 months.

On the SuoerThread there is mention of both and massage therapy and techniques that might give some benifit and relief.

Again, welcome to the club...

Best,
John

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

Crazymom

Hondo said:

Hi Everyone
Thanks for all the info, I like Kent’s idea to make a list but don’t want to call it Hondo’s List, just something we can all have to understand what the doctors don’t tell us, so far this is the side affects I am having.

Radiation Twice and Chemo once to the Head & Neck for NPC, I am right at 8 years from First Treatment and 6 year from Second

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

Please add to the list if you like

Thanks
Hondo

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