Side affects of Radiation / List up-date

charles55

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

list
38. Permanent voice alteration
39. Lethargy/activity intolerance

Chefdaddy

charles55 said:

list
38. Permanent voice alteration
39. Lethargy/activity intolerance

My own issues
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.

Hondo

Chefdaddy said:

My own issues
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.

Daddy Mike

So glad to see you posting my friend

Take care my prayers are with you

buzz99

Chefdaddy said:

My own issues
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.

Side Effects
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.

JUDYV5

Alive
Isn't it weird with all those side effects we could/do suffer from it is still absolutely fantastic to be alive.

fisrpotpe

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

additions
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

Hondo

D Lewis said:

Do you really want to go here?
The worst side effects of all, and, an earlier topic of discussion on these boards, albeit, using the wrong technical terminolgy:

"Carotid stenosis" and
"Carotid blowout"

I found these on an internet search of the effects of H&N cancer treatment including surgery, chemotherapy and radiation together. Not a happy find. Hey, at least it would be quick, eh?

Deb

Hi Deb
Carotid Blowout Syndrome in Patients with Head-and-Neck Cancers: Reconstructive Management by Self-Expandable Stent-Grafts

I had Rad twice to the head and I don't like the sound of this at all. I thing I will get my heart doc to start checking me every 3 months

Thanks for the heads up
Hondo

Kent Cass

JUDYV5 said:

Alive
Isn't it weird with all those side effects we could/do suffer from it is still absolutely fantastic to be alive.

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

dennis318

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

YOUR GUYS ARE RIGHT ON EVERYTHING
The only thing is, every major hospital is having cancer meetings tomorrow, of all the effects of cancer and chemo...I wonder where they came up with all this stuff, and charge us $85.00 and send the rest to our Insurance Company..we are sometimes the doctors and they learn from us...lol, they have no idea what to feel and what we go threw

Army_Guy

Radiation Side Effects
Try this site: http://www.healthcastle.com/se_radiation.shtml. The list does seem to be endless but so far the long list of short term and long term side effects my doctor gave me seems to be the case for me. Many of the side effects have passed since I completed treatment on August 12, 2010, many linger, and some never showed up (YET). I believe all of us react differently but I have to say my doctors seem to have been particularly truthful and frank and I've had no surprises (not to be confused with "no disappointments"). Just stay strong and use this group as a sounding board. I find the folks here to be a great bunch and I share their philosophy: I will help ANYONE with cancer any time that I can, however I can. We're all in this together. Other good on-line sources: NIH website & Mayo Clinic website. Both have answers to a lot of Q's. Stay strong.

Army_Guy

sweetblood22

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

Hoping for a list of just the post treatment side effects.
Kent, those are my post treatment side effects, save the thyroid issues. My tongue still feels as if I just drank 212 degree boiling water.

Kent Cass

sweetblood22 said:

Hoping for a list of just the post treatment side effects.
Kent, those are my post treatment side effects, save the thyroid issues. My tongue still feels as if I just drank 212 degree boiling water.

Sweet
Sorry to hear that. For me, it was flesh-colored stripes running lengthways down my tongue at the end of week #1, but was just caused by the rads interacting with the chemo (I think), and my body got it healed, post-treatment. Still a little more sensitive than it used to be, but no big deal. Thing is, Sweet, I'm NPC, so our C is different, as was what the Drs. dished out. Hope in time things get better, girl.

Believe

kcass

sweetblood22

Kent Cass said:

Sweet
Sorry to hear that. For me, it was flesh-colored stripes running lengthways down my tongue at the end of week #1, but was just caused by the rads interacting with the chemo (I think), and my body got it healed, post-treatment. Still a little more sensitive than it used to be, but no big deal. Thing is, Sweet, I'm NPC, so our C is different, as was what the Drs. dished out. Hope in time things get better, girl.

Believe

kcass

No worries. It is
No worries. It is pretty amazing how different but the same we all are and how differently our bodies handled treatment.

seenanN

fisrpotpe said:

additions
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

Side affects of Radiation / List up-date
59 Muscles cramp
60 Problem speaking
61 Problem driving
In 61 side effects I got 32 of them and just like JUDYV5 said to be alive is fantastic.

sweetblood22

seenanN said:

Side affects of Radiation / List up-date
59 Muscles cramp
60 Problem speaking
61 Problem driving
In 61 side effects I got 32 of them and just like JUDYV5 said to be alive is fantastic.

I thought having 32 sounded
I thought having 32 sounded like a lot so I counted how many I had and apparently I have 32 right now also, at almost 21 months out I think that sucks. Lol.

luv4lacrosse

RADIATION SIDE EFFECTS
Sorry for being gone for awahile, but just needed a break. My biggest side effect for me is fatigue. I can sleep 12 plus hours and feel awfull on some days. I find the more I stay hydrated, the less fatigue I have. I assume the swallowing issues I have are radiation related, but seem to be getting better. I am able to eat selective foods. Interest in sex seems to be geting a little better as well as a general feeling of wanting to participate in life. I am 90 days post treatment and back to work full time. I have not yet experienced any dental issues other than my teeth are a little sensitive. I go for my first appt since treatment a week from Friday. I also assuem the ringing in my ears is Carboplatin related and not Radiaition??

Thanks

Mike

Hal61

luv4lacrosse said:

RADIATION SIDE EFFECTS
Sorry for being gone for awahile, but just needed a break. My biggest side effect for me is fatigue. I can sleep 12 plus hours and feel awfull on some days. I find the more I stay hydrated, the less fatigue I have. I assume the swallowing issues I have are radiation related, but seem to be getting better. I am able to eat selective foods. Interest in sex seems to be geting a little better as well as a general feeling of wanting to participate in life. I am 90 days post treatment and back to work full time. I have not yet experienced any dental issues other than my teeth are a little sensitive. I go for my first appt since treatment a week from Friday. I also assuem the ringing in my ears is Carboplatin related and not Radiaition??

Thanks

Mike

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

MS009

Chefdaddy said:

My own issues
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.

Post Treatment Side Effects
Hi Everyone,

This site is great and full of helpful info. I just joined. My husband, 45 yrs old, finished 33 radiation treatments with 3 chemo rounds for SCC stage 4 in tonsils. He went to Sloan Kettering. My question is that he is now 6 weeks after treatment and he is now suddenly vomiting/diarrhea and cramping. He does have the PEG but even that liquid gets him sick. But our chemo doc said this is something other than radiation. Did anyone experience this about 6 weeks after radiation?

oopsydoopsy

Kent Cass said:

list
20. Loss of Gum Tissue
21. Nerve pain w/head movement (L'Hermitte's Sign)
22. Camker sores
23. Facial pain in rad areas


kcass

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

sweetblood22

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

Oopsydoopsy
That doesn't sound like L'Hermittes to me. Your head doesn't move or twitch on it's own with that. It's more like when you look down or move your head in a certain way, you get a tingly electric shock feeling.

Your question is sort of buried in this thread, you may want to repost your symptoms and question as a new topic on the board and see if anyone has experience with this. More people will see it that way than buried in an old thread.