please help

corina
corina Member Posts: 2
edited March 2014 in Breast Cancer #1
I have stage 4 invasive aggressive metastatic breast cancer that was HER2Positive I took adriomicyn adriomicyn cytoxin it is a rough chemo but the,taxol was worse ,28 days radiation and 18 mo of herceptin they gave me 8 mo.in Sept 2005 I just celebrated 4years out and cancer free any questions feel free to email me at [email protected] recently I have had this terrable pain in my ear, neck, temple and teeth went to primary Dr. 2 rounds antibiotic alergy meds didn't work went to dentist ruled out any abcess or infection the pain has got worse went to ER they took CT of ear and side of head nothing found called My Oncologist they said if it isnt cancer related there is nothing they can do (how am i suposed to know if it is cancer related im not a doctor the pain is unbarable I now have an appointment with a ear nose and throat dr. on tues sept 22 hopefully I can get an answer if anyone has any suggestions please help i am running out of options

Comments

  • mimivac
    mimivac Member Posts: 2,143
    Hi
    Congratulations on your survivorship. That's great. Very sorry about the pain though. Hopefully the doctors will have an effective treatment to give you relief.
  • Akiss4me
    Akiss4me Member Posts: 2,188
    Corina...
    I responded to your post on the other thread. Hope you can go back and read it. Pammy
  • chenheart
    chenheart Member Posts: 5,159
    I cannot begin to imagine
    I cannot begin to imagine the pain you are in~ it seems you have done everything possible to find out the cause. Did the ER docs at least give you pain meds to take the edge off? The 22nd must seems like light years away; I dearly hope you get relief before then, and a proper diagnosis soon to follow.

    Please keep us popsted; I am sorry that I don't have any suggestions for you :-(

    Hugs,
    Chen♥
  • lanie940
    lanie940 Member Posts: 490
    Could it possibly be
    Could it possibly be temporal arteritis? My grandfather had it once. I don't know, just a guess.
  • Kat11
    Kat11 Member Posts: 1,931 Member
    chenheart said:

    I cannot begin to imagine
    I cannot begin to imagine the pain you are in~ it seems you have done everything possible to find out the cause. Did the ER docs at least give you pain meds to take the edge off? The 22nd must seems like light years away; I dearly hope you get relief before then, and a proper diagnosis soon to follow.

    Please keep us popsted; I am sorry that I don't have any suggestions for you :-(

    Hugs,
    Chen♥

    Good News and bad all at the
    Good News and bad all at the same time. Ear pain is just the worst. I hope they can help you soon. Congrats on the good stuff.
  • Katz77
    Katz77 Member Posts: 598
    Same thing?
    I was newly dx june 2009. congrats on survial. I have HER2 and total lymph node, same drugs as you. Hoping to be ca free myself. I've started taxol/herceptin only one series. I to have been having stabbing ear neck temple pains. I've had this prior to cancer dx so I haven't been real concerned, but this has lasted longer. When I had this a few yrs back was told by ENT that the facial nerve can be irritated for many reasons. Never did find what my "reason"was, but ear drops helped. They haven't help me this time. haven't seen a Dr yet. I think u going to a ENT will be ur best bet. Please think positive. My husband read ur concern and is inspired by ur recovery. he's more scared than me. Wish u luck in finding out. I understand it is very painful. Hugs and love Katz
  • adan57
    adan57 Member Posts: 4
    I may know this answer
    Hi,

    Well, if it is what I think it is, you will be just fine HOWEVER....the pain is unbearable.

    I went through all you are going through to find out it is something called Trigeminal Neurolgia. They call it the suicide disease because there is nothing that takes that pain away. It is NOT life threatening although going through it, I was looking for a way out.

    You have been through so much why would someone send this to you. It is horrible.
    I think you need to see a neurologist. You have to wonder why these things happen to us.
    I dont have cancer, my sister and my best friend are both very recent survivors. I came on here out of curiousity about my best friends breast cancer. Was going to tell her about this sight. Then I saw your post and I feel so bad for you.

    I was on morphine, oxycontin, percocet, just got stoned, still in pain but stoned.

    I had to leave my job because of it, I am a single woman, live alone, lost my home, lost my car pretty much everything so I am a bitter woman when it comes to Tri-Nu.
    Please let me know how you make out and if you have any questions you can email me.

    By the way, got a new job that is better than my last, got a new car even better, got an apartment and doing ok for now!!!
    I guess this is someones idea of a bad joke.

    Let me know if I can answer any questions for you.
    Ann
  • tgf
    tgf Member Posts: 950 Member
    adan57 said:

    I may know this answer
    Hi,

    Well, if it is what I think it is, you will be just fine HOWEVER....the pain is unbearable.

    I went through all you are going through to find out it is something called Trigeminal Neurolgia. They call it the suicide disease because there is nothing that takes that pain away. It is NOT life threatening although going through it, I was looking for a way out.

    You have been through so much why would someone send this to you. It is horrible.
    I think you need to see a neurologist. You have to wonder why these things happen to us.
    I dont have cancer, my sister and my best friend are both very recent survivors. I came on here out of curiousity about my best friends breast cancer. Was going to tell her about this sight. Then I saw your post and I feel so bad for you.

    I was on morphine, oxycontin, percocet, just got stoned, still in pain but stoned.

    I had to leave my job because of it, I am a single woman, live alone, lost my home, lost my car pretty much everything so I am a bitter woman when it comes to Tri-Nu.
    Please let me know how you make out and if you have any questions you can email me.

    By the way, got a new job that is better than my last, got a new car even better, got an apartment and doing ok for now!!!
    I guess this is someones idea of a bad joke.

    Let me know if I can answer any questions for you.
    Ann

    stress??
    Don't know what your stress level is ... but I find that when I am extremely anxious, stressed or depressed I clench my jaw very tight. I have discovered that I have to make a conscious effort to relax my jaw and un-clench my teeth. There are times when I'll even wake up in the morning and my head and jaw will be throbbing ... and I've realized that I've even slept with my jaw/teeth clenched.

    good luck.

    hugs.
    teena