Side affects of Radiation / List up-date

Hondo
Hondo Member Posts: 6,636 Member
edited December 2022 in Head and Neck Cancer #1
Does anyone have the Full list of Radiation Side effects, it seams like every time I go to a doctor about a problem I am told it is Radiation side effects. At what point do they stop blaming it on the treatment and start being doctors again and looking.

Just asking to see if anyone else is having this same problem.
«1345

Comments

  • terryscarlett
    terryscarlett Member Posts: 143
    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.....
  • BrianKrashpad
    BrianKrashpad Member Posts: 188
    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!
  • Hal61
    Hal61 Member Posts: 655
    long term side effects
    Hi Hondo, sorry to hear you are still fighting the infection and the doctors. Short-term side effects are well documented. Long term effects actually make a fairly short list.

    Harry Quon, MD, MS (CRM), Assistant Professor of Radiation Oncology at the Abramson Cancer Center of the University of Pennsylvania, answered the very question this way:

    "The long-term effects of radiation depend on the technique of irradiation, the dose and the location that was irradiated.

    Typically, most head and neck squamous cell cancers are locoregionally advanced, requiring treatment of both sides of the neck. In the past, this was accomplished with two large radiation fields on both sides of the neck, matched with a third field coming from the front to treat the lower neck. This resulted in a larger volume of normal tissues being irradiated and accounted for many long-term side effects. It is helpful to summarize the long-term side effects by considering the normal tissues in the head and neck that were included in the treatment field. This is also helpful to understand how newer techniques, such as IMRT, can reduce the side effects of head and neck irradiation.

    Among these side effects is injury to the parotid glands (salivary gland) on both sides of the neck, which can lead to xerostomia, or dry mouth. Dry mouth is a concern because it makes swallowing difficult when you can't properly lubricate food. The absence of saliva and change in composition of any remaining saliva increases the risk of dental complications, because saliva helps to kill bacteria on the teeth.

    Most patients receive a dose of radiation to the mandible (lower jaw bone), which raises concerns for most dentists that subsequent dental extractions may lead to problems with wound healing over the jaw bone. This is why most dentists want to evaluate patients before they start radiation therapy.

    Radiation, particularly when combined with concurrent chemotherapy, can result in edema (swelling) of the tissues in the mouth and throat. This can be further complicated if neck surgery is done after chemoradiation, as surgery further impairs the normal lymphatic fluid drainage of the neck. This persistent edema can make swallowing more difficult.

    Lastly, there can be fibrosis (scarring) that can affect various normal functions, depending on where it is located. If it is in the soft tissues of the neck, particularly if surgery is performed, then the range of motion of the neck can be limited, such as when looking over the shoulder while driving. If it is in the back of the tongue and upper voice box, then the ability to move food from the mouth into the throat can be limited, and patients can feel that they can't "get the food back" when swallowing. If the cancer was in the throat area beside the voice box, then patients can often describe food sticking and not passing a point in their throat. Sometimes, a procedure that stretches the throat can help with this, but if the muscle of the swallowing tube has been scarred down, it may not be reversible."

    I know you've covered all this ground, and your current problem isn't listed. We all know that doctors are generally a lazy and shiftless breed. I don't know how to get them to think.

    best, Hal
  • Kent Cass
    Kent Cass Member Posts: 1,898
    Hal61 said:

    long term side effects
    Hi Hondo, sorry to hear you are still fighting the infection and the doctors. Short-term side effects are well documented. Long term effects actually make a fairly short list.

    Harry Quon, MD, MS (CRM), Assistant Professor of Radiation Oncology at the Abramson Cancer Center of the University of Pennsylvania, answered the very question this way:

    "The long-term effects of radiation depend on the technique of irradiation, the dose and the location that was irradiated.

    Typically, most head and neck squamous cell cancers are locoregionally advanced, requiring treatment of both sides of the neck. In the past, this was accomplished with two large radiation fields on both sides of the neck, matched with a third field coming from the front to treat the lower neck. This resulted in a larger volume of normal tissues being irradiated and accounted for many long-term side effects. It is helpful to summarize the long-term side effects by considering the normal tissues in the head and neck that were included in the treatment field. This is also helpful to understand how newer techniques, such as IMRT, can reduce the side effects of head and neck irradiation.

    Among these side effects is injury to the parotid glands (salivary gland) on both sides of the neck, which can lead to xerostomia, or dry mouth. Dry mouth is a concern because it makes swallowing difficult when you can't properly lubricate food. The absence of saliva and change in composition of any remaining saliva increases the risk of dental complications, because saliva helps to kill bacteria on the teeth.

    Most patients receive a dose of radiation to the mandible (lower jaw bone), which raises concerns for most dentists that subsequent dental extractions may lead to problems with wound healing over the jaw bone. This is why most dentists want to evaluate patients before they start radiation therapy.

    Radiation, particularly when combined with concurrent chemotherapy, can result in edema (swelling) of the tissues in the mouth and throat. This can be further complicated if neck surgery is done after chemoradiation, as surgery further impairs the normal lymphatic fluid drainage of the neck. This persistent edema can make swallowing more difficult.

    Lastly, there can be fibrosis (scarring) that can affect various normal functions, depending on where it is located. If it is in the soft tissues of the neck, particularly if surgery is performed, then the range of motion of the neck can be limited, such as when looking over the shoulder while driving. If it is in the back of the tongue and upper voice box, then the ability to move food from the mouth into the throat can be limited, and patients can feel that they can't "get the food back" when swallowing. If the cancer was in the throat area beside the voice box, then patients can often describe food sticking and not passing a point in their throat. Sometimes, a procedure that stretches the throat can help with this, but if the muscle of the swallowing tube has been scarred down, it may not be reversible."

    I know you've covered all this ground, and your current problem isn't listed. We all know that doctors are generally a lazy and shiftless breed. I don't know how to get them to think.

    best, Hal

    Interesting-
    editorial comment at the end of your post, Hal! And, you know, it is indicative of the C med community. A lot of us have the same side-effects along the road of recovery, but it's not like they forewarn you about much of anything, in spite of the pre-treatment Dental exam. Seems like all they wanna know about concerns symptoms that might tell them where the C has a presence, which is good; however, they really should help us to prepare for the aftermath better. As for me: I count my blessings that most of my side-effects have diminished to the point of not being major issues.

    Suggestion: somebody should compile a list of all the common, and not-so common, side-effects we have experienced, post-treatment. L'Hermittes and tooth damage are the only ones active with me right now, but I've experienced the cranial nerve, thyroid chills, dry mouth, canker sores on the tongue sides from exposed bone in my lower-back mouth, etc. There really should be a numbered list for all those nearing the end of treatment to better prepare them, and how best to deal with them. Maybe we can call it Hondo's List, as it's his idea, and a good one.

    kcass
  • CajunEagle
    CajunEagle Member Posts: 408
    Kent Cass said:

    Interesting-
    editorial comment at the end of your post, Hal! And, you know, it is indicative of the C med community. A lot of us have the same side-effects along the road of recovery, but it's not like they forewarn you about much of anything, in spite of the pre-treatment Dental exam. Seems like all they wanna know about concerns symptoms that might tell them where the C has a presence, which is good; however, they really should help us to prepare for the aftermath better. As for me: I count my blessings that most of my side-effects have diminished to the point of not being major issues.

    Suggestion: somebody should compile a list of all the common, and not-so common, side-effects we have experienced, post-treatment. L'Hermittes and tooth damage are the only ones active with me right now, but I've experienced the cranial nerve, thyroid chills, dry mouth, canker sores on the tongue sides from exposed bone in my lower-back mouth, etc. There really should be a numbered list for all those nearing the end of treatment to better prepare them, and how best to deal with them. Maybe we can call it Hondo's List, as it's his idea, and a good one.

    kcass

    I agree..............
    My one and only huge, MAJOR complaint in this whole ordeal is that I, or my wife, were not informed of the unbelieveable amount of misery that one must go through after all the treatment is "officially" over. And, yea....I know, everybody's different. But.... !!

    Larry
  • ekdennie
    ekdennie Member Posts: 236 Member
    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!
  • fisrpotpe
    fisrpotpe Member Posts: 1,349
    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
  • davidgskinner
    davidgskinner Member Posts: 81
    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

    And...
    You don't even get any cool superpowers or anything! I was hoping at least to glow in the dark. But no. How come Peter Parker got to be a Spiderman?
    Sorry to be a smart a**. Maybe that's my side effect...
  • fisrpotpe
    fisrpotpe Member Posts: 1,349

    And...
    You don't even get any cool superpowers or anything! I was hoping at least to glow in the dark. But no. How come Peter Parker got to be a Spiderman?
    Sorry to be a smart a**. Maybe that's my side effect...

    Glow
    Glow in the dark came from my chemo, it showed up in a green bag and I still glow green after many years.
  • kingcole42005
    kingcole42005 Member Posts: 178
    Hal61 said:

    long term side effects
    Hi Hondo, sorry to hear you are still fighting the infection and the doctors. Short-term side effects are well documented. Long term effects actually make a fairly short list.

    Harry Quon, MD, MS (CRM), Assistant Professor of Radiation Oncology at the Abramson Cancer Center of the University of Pennsylvania, answered the very question this way:

    "The long-term effects of radiation depend on the technique of irradiation, the dose and the location that was irradiated.

    Typically, most head and neck squamous cell cancers are locoregionally advanced, requiring treatment of both sides of the neck. In the past, this was accomplished with two large radiation fields on both sides of the neck, matched with a third field coming from the front to treat the lower neck. This resulted in a larger volume of normal tissues being irradiated and accounted for many long-term side effects. It is helpful to summarize the long-term side effects by considering the normal tissues in the head and neck that were included in the treatment field. This is also helpful to understand how newer techniques, such as IMRT, can reduce the side effects of head and neck irradiation.

    Among these side effects is injury to the parotid glands (salivary gland) on both sides of the neck, which can lead to xerostomia, or dry mouth. Dry mouth is a concern because it makes swallowing difficult when you can't properly lubricate food. The absence of saliva and change in composition of any remaining saliva increases the risk of dental complications, because saliva helps to kill bacteria on the teeth.

    Most patients receive a dose of radiation to the mandible (lower jaw bone), which raises concerns for most dentists that subsequent dental extractions may lead to problems with wound healing over the jaw bone. This is why most dentists want to evaluate patients before they start radiation therapy.

    Radiation, particularly when combined with concurrent chemotherapy, can result in edema (swelling) of the tissues in the mouth and throat. This can be further complicated if neck surgery is done after chemoradiation, as surgery further impairs the normal lymphatic fluid drainage of the neck. This persistent edema can make swallowing more difficult.

    Lastly, there can be fibrosis (scarring) that can affect various normal functions, depending on where it is located. If it is in the soft tissues of the neck, particularly if surgery is performed, then the range of motion of the neck can be limited, such as when looking over the shoulder while driving. If it is in the back of the tongue and upper voice box, then the ability to move food from the mouth into the throat can be limited, and patients can feel that they can't "get the food back" when swallowing. If the cancer was in the throat area beside the voice box, then patients can often describe food sticking and not passing a point in their throat. Sometimes, a procedure that stretches the throat can help with this, but if the muscle of the swallowing tube has been scarred down, it may not be reversible."

    I know you've covered all this ground, and your current problem isn't listed. We all know that doctors are generally a lazy and shiftless breed. I don't know how to get them to think.

    best, Hal

    Wow that is a pretty strong statement about doctors!
    Wow that is a pretty strong statement about doctors! Though I would agree with you on my last 2 doctors the one I have now is absolutely incredible. I will let you all know if you want an excellent doctor with impeccable training it is Dr. Eisele at UCSF. UCSF is also a CCC(Comprehensive Cancer Center)So your case is not just discussed by one doctor you have up to 20 or 30 at a time discussing and deciding your treatment. He is the only doctor that I've had that I felt I could trust 100%. The last ones misdiagnosed my cancer and I had it for 3 years before it was finally taken care of. I was told I had a blocked salivary gland by 2 Kaiser doctors, they were so wrong.
  • Hal61
    Hal61 Member Posts: 655

    Wow that is a pretty strong statement about doctors!
    Wow that is a pretty strong statement about doctors! Though I would agree with you on my last 2 doctors the one I have now is absolutely incredible. I will let you all know if you want an excellent doctor with impeccable training it is Dr. Eisele at UCSF. UCSF is also a CCC(Comprehensive Cancer Center)So your case is not just discussed by one doctor you have up to 20 or 30 at a time discussing and deciding your treatment. He is the only doctor that I've had that I felt I could trust 100%. The last ones misdiagnosed my cancer and I had it for 3 years before it was finally taken care of. I was told I had a blocked salivary gland by 2 Kaiser doctors, they were so wrong.

    Sorry Carole, Just a Wisecrack
    No offense to your or anyone's doc Carole. They've saved my life, and I've had some good ones, especially my primary physician who didn't hesitate to send me for biopsy when I showed up with swollen lymph glands. I told her they had been up for almost three weeks and she sent me directly for a biopsy, didn't put me on antibiotics. Saved me time.

    best, Hal
  • Scambuster
    Scambuster Member Posts: 973
    fisrpotpe said:

    Glow
    Glow in the dark came from my chemo, it showed up in a green bag and I still glow green after many years.

    Don't tell.....
    I sometimes think the Docs purposely do not inform you of the rough road ahead in case it might scare you off so 1. They scare you too much causing undue stress, 2. you run off and avoid the treatment and or 2. they lose a patient.

    My Rads Onco certainly watered down the effects and dismissed hair loss, taste loss, saliva loss as "it will all come back in a few months".

    Not sure whether to appreciate their approach or despise them for it, and if it would have made a difference either way.

    Scam
  • rozaroo
    rozaroo Member Posts: 665

    Don't tell.....
    I sometimes think the Docs purposely do not inform you of the rough road ahead in case it might scare you off so 1. They scare you too much causing undue stress, 2. you run off and avoid the treatment and or 2. they lose a patient.

    My Rads Onco certainly watered down the effects and dismissed hair loss, taste loss, saliva loss as "it will all come back in a few months".

    Not sure whether to appreciate their approach or despise them for it, and if it would have made a difference either way.

    Scam

    Side Effect's
    Thank you for all of the information. I was told of Dry mouth,damaged taste bud's, hair loss & fatigue. I am experiencing a few more & learning to live with it as we all do. I just wish I was better prepared. Thank you so much all of you wonderfull people on CSN.
  • timreichhart
    timreichhart Member Posts: 194
    rozaroo said:

    Side Effect's
    Thank you for all of the information. I was told of Dry mouth,damaged taste bud's, hair loss & fatigue. I am experiencing a few more & learning to live with it as we all do. I just wish I was better prepared. Thank you so much all of you wonderfull people on CSN.

    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
  • Hal61
    Hal61 Member Posts: 655

    Don't tell.....
    I sometimes think the Docs purposely do not inform you of the rough road ahead in case it might scare you off so 1. They scare you too much causing undue stress, 2. you run off and avoid the treatment and or 2. they lose a patient.

    My Rads Onco certainly watered down the effects and dismissed hair loss, taste loss, saliva loss as "it will all come back in a few months".

    Not sure whether to appreciate their approach or despise them for it, and if it would have made a difference either way.

    Scam

    Same here
    Hi Scam, I've thought the same thing. If possible symptoms had been described in more detail, I would have made the same choices. I don't think that might be true for everyone, but for me, yes . . . but I have to amend that. If I had been clear about the hearing loss (permanent), and tinnitus, I would have asked about a switch to Carboplatin on my last chemo visit. My rad onc used to rub squish her rubber doc gloves between her fingers a few inchs from each ear to gauge possible hearing loss. I can still hear rubber gloves being rubbed a few inches from either ear just fine, I just can't hear people talking near as well.

    I'm trying an acupuncturist now for the tinnitus, lot of anecdotal "evidence" of potential help there. I'm still on your vitamin starter regime too Scam, five or six you mentioned as system boosters. My acupuncturist said the B12 was better taken sub lingual, and I will switch to that. I also have a niece who is a doc, and she recently finished specialty training and certification in nutrition and aging. It required both written and oral testing for completion, so it was rigorous. She now it absolutely convinced from study that we are advised way too little Vitamin D by the FDA, and that we require 5,000 to 6,000 at least, daily.

    best, Hal
  • Hondo
    Hondo Member Posts: 6,636 Member
    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
  • D Lewis
    D Lewis Member Posts: 1,581
    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

    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
  • Kent Cass
    Kent Cass Member Posts: 1,898
    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
    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
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    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

    More to add to list
    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.
  • timreichhart
    timreichhart Member Posts: 194

    More to add to list
    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.

    Add to the list
    34. Major Wax Build Up in the inner ear
    35. Ear Infections
    36. Sore Throat
    37. Mucus Build Up