9 year survivor, with a couple questions..please help!

ButtonsMom
ButtonsMom Member Posts: 10
edited March 2014 in Head and Neck Cancer #1
9 years ago I was diagnosed with Tonsilar cancer. Ever since then, I have been having 2 sorts of problems. One is where my memory is really bad. I don't remember much of my past, nor what I have done even last week. It's extremely frustrating. The other problem is that I get a pain in the left side of my neck, below my ear by the jaw line. It makes my left ear and the lower part of my jaw hurt for 3-4 days. This happens mainly when the weather changes or when it is cold outside. I had both chemotherapy and radiation treatments. Could the radiation treatments affect my memory? Like I said, it's extremely frustrating, to the point where I just want to cry. Please help! Thank you.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    Please don't cry :)
    There is gathering and convincing evidence that both chemo and rads can lead to memory issues. In the short term, this is, of course, referred to as chemobrain. It is now, I think, acknowledged as a very real thing and is being studied.

    Long term effects have not been explored, to my knowledge, but you are not alone (there are at least two of us :)).

    The pain you describe is also not rare, I don't think. Radiation tends to leave scar tissue, and apparently that tissue can remain for years. I am nearly five years out of my surgery, more than four years out of my chemo and rads (first go-round) and still I have knots on my jaw, and have some pain and even what feels like cramps in my throat from time to time as a result. It does not sound like mine is as painful as yours, but it is there, nonetheless, and when it happens it is momentarily excruciating.

    Again, you are not alone.

    I would suggest massage therapy, acupuncture or even tradition physical therapy (although in the latter case the folks who are up for the task might be few and far between). I have only tried the last of these, and with the one qualified therapist in my area to do the work, and it did wonders while it lasted.

    On my own, I use a hot rice bag (you have to see it to appreciate it) that my dad's wife made for me, along with hot baths, and these do wonders for me. But I DO suggest the therapy of some sort.

    Back to the memory: please consider doing puzzles on a daily basis, crosswords, sudoku (however it's spelled), that sort of thing. Read daily, even if you have not in the past. Engage your mind.

    Best wishes.

    And don't cry :)

    Take care,

    Joe
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Buttons
    Sound normal to me, I too after radiation and chemo can’t remember much, and the pain in the jaw could be TMJ caused by the radiation. Joe makes a good suggestion about trying therapy, check with your doctor and see what he thinks.

    PS: Welcome here to CSN you found the right place to be with others who are going through the same things, I hope you plan to stay and become part of the family.
  • ButtonsMom
    ButtonsMom Member Posts: 10
    #4
    Hondo said:

    Hi Buttons
    Sound normal to me, I too after radiation and chemo can’t remember much, and the pain in the jaw could be TMJ caused by the radiation. Joe makes a good suggestion about trying therapy, check with your doctor and see what he thinks.

    PS: Welcome here to CSN you found the right place to be with others who are going through the same things, I hope you plan to stay and become part of the family.

    Thanks!
    I don't feel so alone anymore!! I did some research about TMJ, and that sounds a lot like what I have. Unfortunately with my oncologist, he no longer has to see me. I shall give my radiation oncologist a call later and see what they may suggest. As mentioned, it's very frustrating, but at least I know what the cause of my memory problems are.

    Joe-I read everyday. Problem is I can't remember characters, or too much of the book, LOL! It's really bad when me and my boyfriend go somewhere and I don't even remember how we even got there that quick! xD

    Thanks again, and may many blessings head your way guys! I really appreciate this! <3 (((hugs)))
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    Buttons, I asked my doctor
    Buttons, I asked my doctor and he said no but I'm telling you IT CAN. My memory has become so bad that I had and MRI of my brain, and eeg of my brain and I'm seeing a Nurologist later this month. You are so right, IT IS DAMN FRUSTRATING. Nobody will ever convince me that radiation had nothing to do with it. I wasn't this bad befor the trmnts. I greatly feel your pain and if you find anything that proves it, please let me know. I feel your pain and you are in my prayers.
    God bless you,
    debbie
  • ButtonsMom
    ButtonsMom Member Posts: 10
    #6
    debbiejeanne said:

    Buttons, I asked my doctor
    Buttons, I asked my doctor and he said no but I'm telling you IT CAN. My memory has become so bad that I had and MRI of my brain, and eeg of my brain and I'm seeing a Nurologist later this month. You are so right, IT IS DAMN FRUSTRATING. Nobody will ever convince me that radiation had nothing to do with it. I wasn't this bad befor the trmnts. I greatly feel your pain and if you find anything that proves it, please let me know. I feel your pain and you are in my prayers.
    God bless you,
    debbie

    Thanks debbiejeanne!
    I shall have a chat with my family doctor about seeing a Neurologist as well. Sometimes I just want to scream! My memory wasn't that bad either before the treatments. My onc. put me on a strong chemo treatment too. He hooked me to that goofy pump because he didn't want to collapse my little veins from having to come in all the time. I also deal with depression and anxiety, and everytime I think about having had cancer, I just want to hide away and bawl, seriously bawl. It drives me nuts when I see how my boyfriend and our daughter can sit there and eat fruit and tomatoes and pickles and the like, and I can't. That just depresses me even more. Ugh!
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #7
    rules of survivorship
    Buttonsmom
    I am almost 15 years surviving Radiation, Chemo and Surgery, then radionercrosis two years ago with addition of trach followed by more cancer on the tongue 18 months ago.

    I to have huge memory problems but I personally call it Radmo. This is the effects of Radiation and Chemo and to my knowledge there has been no study of the memory loss do to treatments. But I can say from my point of view it is part of the rules of survivorship. I at times get frustrated by it but very soon realize I am grateful to be alive and surviving.

    Radiation causes scar tissue as well as surgery. Many of my doctors have told me that scar tissue takes a min. of 7 years for scar tissue to fully develope and not for certain that once it does develope the pains/cramps will lesson. For me at about 10 years post treatments they have lessoned but not completely.

    I believe that treatments but 7-20 years ago were very expanded area's do to the equipment. Today with the advancement of equipment they can pinpoint radiaton and that will very much lesson the long term side effects.

    Our problem or reminder like my special doctor used was these cramps/pains/reminders tell us that we(doctors) can not find any cancer "Just Keep Going Everyday and Having fun"

    Memory and reminders are just a small part of survivorship. It is not always fun being a survivor as very few people understand but we whipped Cancer and our opprotunity of New Life continues. Thank you Lord Above!

    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    fisrpotpe said:

    rules of survivorship
    Buttonsmom
    I am almost 15 years surviving Radiation, Chemo and Surgery, then radionercrosis two years ago with addition of trach followed by more cancer on the tongue 18 months ago.

    I to have huge memory problems but I personally call it Radmo. This is the effects of Radiation and Chemo and to my knowledge there has been no study of the memory loss do to treatments. But I can say from my point of view it is part of the rules of survivorship. I at times get frustrated by it but very soon realize I am grateful to be alive and surviving.

    Radiation causes scar tissue as well as surgery. Many of my doctors have told me that scar tissue takes a min. of 7 years for scar tissue to fully develope and not for certain that once it does develope the pains/cramps will lesson. For me at about 10 years post treatments they have lessoned but not completely.

    I believe that treatments but 7-20 years ago were very expanded area's do to the equipment. Today with the advancement of equipment they can pinpoint radiaton and that will very much lesson the long term side effects.

    Our problem or reminder like my special doctor used was these cramps/pains/reminders tell us that we(doctors) can not find any cancer "Just Keep Going Everyday and Having fun"

    Memory and reminders are just a small part of survivorship. It is not always fun being a survivor as very few people understand but we whipped Cancer and our opprotunity of New Life continues. Thank you Lord Above!

    John

    Hi John


    I enjoyed reading your post, welcome here to the CSN family. I hope you plan to stay with us and help others who are just on the starting line.

    All the best to you my friend
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #9
    Hondo said:

    Hi John


    I enjoyed reading your post, welcome here to the CSN family. I hope you plan to stay with us and help others who are just on the starting line.

    All the best to you my friend

    Hondo
    Thanks, my plan is to help anyone that needs help. I need to figure this site out. Is there a way they let you know when someone else add's to the post you have added to. For example, I had no idea you wrote the nice note until I went back in.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #10
    fisrpotpe said:

    Hondo
    Thanks, my plan is to help anyone that needs help. I need to figure this site out. Is there a way they let you know when someone else add's to the post you have added to. For example, I had no idea you wrote the nice note until I went back in.

    yes
    At the top, just above the initial post, is an RSS link, saying something to the effect of "Subscribe comments for [post title]" Click that and you will be (or at least should be) updated when the post is updated.

    Take care,

    Joe

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