radiation, chemo side effects years after treatment

bellhst
bellhst Member Posts: 1
in Head and Neck Cancer #1
After providing the doctors wrong I am still here 9 years after stage 4 tonsil cancer. Even through I beat the odds 15% survival rate I have developed what the doctors say are the side effects from chemo radiation. First Feeding tube, acid reflect that they say was destroying my right vocal cord (left destroyed during original surgery) Now have a trach to breathe because right vocal cord stopped working but nerve still works. Lost all use of left shoulder arm, hand and now moving to right side. (no cancer, orginial cancer left side) told nerves are not working. Here is my problem. Doctors disagree. ENT and Neurologist say chemo and radiation, but all other doctors say these effects should have started years earlier. Has anyone had these problems and any help. I am looking everywhere and willing to do clinical trials to help myself or be of help to others.
thank you John

Comments

  • Dav1965
    Dav1965 Member Posts: 132
    #2
    Where do you live
    I live in NC and i love my team of doctors i feel i would not be hear today without them. Get a second opinion from a great doctor. God bless David
  • Greend
    Greend Member Posts: 678
    #3
    YES
    I was treated 15 years ago and two years ago started having the same symptoms. I have a paralyzed left vocal cord, just got the tube (did gain weight as a result), right shoulder and back in pain, loss of feeling in chin, tip of tongue and lower right jaw and difficulty swallowing. It took me a while to find a Dr that understood (finally saw a specialist at the Kirkland Clinic, Birmingham Alabama) and he told me these effects usually happen at or around the seven year point (radiation is the cause) and I am lucky to have made it to twelve.

    They now treat the symptoms as best they can. I too had tonsil cancer.

    Doctor(s) works in the ENT department.

    Please note: THIS DOES NOT HAPPEN TO MOST SURVIVIORS.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Greend said:

    YES
    I was treated 15 years ago and two years ago started having the same symptoms. I have a paralyzed left vocal cord, just got the tube (did gain weight as a result), right shoulder and back in pain, loss of feeling in chin, tip of tongue and lower right jaw and difficulty swallowing. It took me a while to find a Dr that understood (finally saw a specialist at the Kirkland Clinic, Birmingham Alabama) and he told me these effects usually happen at or around the seven year point (radiation is the cause) and I am lucky to have made it to twelve.

    They now treat the symptoms as best they can. I too had tonsil cancer.

    Doctor(s) works in the ENT department.

    Please note: THIS DOES NOT HAPPEN TO MOST SURVIVIORS.

    Same here

    9 years from first rad and 6 from second rad and chemo treatment. Voice is just about gone and pain from the nerve coming down the left side of the head into the neck. Loss about 90% of hearing in both ears, All this just started about 9 months ago. Now high and low blood pressure problem

    Still alive, I you find anything that helps please let us know.

    Welcome to CSN, Take care and keep posting
    Hondo
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #5
    No Idea
    I can only share what I have experience seeing several doctors that I have. The just and really like the doctor told me yesterday "your in the group that we finally started to see with long term survivorship" Now 15 years for me and so many things going down hill slowly in many ways and at 54 they should not be. The real answer is they just do not have enough history and experience. We will be the survivor pack that shows the new survivors how to take care of the long term side effects.

    Maybe we should start another CSN site for Head and Neck Long term survivor Help.

    John
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #6
    fisrpotpe said:

    No Idea
    I can only share what I have experience seeing several doctors that I have. The just and really like the doctor told me yesterday "your in the group that we finally started to see with long term survivorship" Now 15 years for me and so many things going down hill slowly in many ways and at 54 they should not be. The real answer is they just do not have enough history and experience. We will be the survivor pack that shows the new survivors how to take care of the long term side effects.

    Maybe we should start another CSN site for Head and Neck Long term survivor Help.

    John

    Please
    I'm less than a year post radiation. I need to hear your stories. Please do not consider moving to another board, where they will be missed by new survivors. Perhaps you should agree about a common phrase to be used in the subject line of all posts, so you can find them easier.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #7
    ToBeGolden said:

    Please
    I'm less than a year post radiation. I need to hear your stories. Please do not consider moving to another board, where they will be missed by new survivors. Perhaps you should agree about a common phrase to be used in the subject line of all posts, so you can find them easier.

    Golden
    No way would I leave her, I would do both. The Idea would just keep the Long Term treatments and problems somewhat separate. Just a thought while I was typing.

    John
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #8
    fisrpotpe said:

    No Idea
    I can only share what I have experience seeing several doctors that I have. The just and really like the doctor told me yesterday "your in the group that we finally started to see with long term survivorship" Now 15 years for me and so many things going down hill slowly in many ways and at 54 they should not be. The real answer is they just do not have enough history and experience. We will be the survivor pack that shows the new survivors how to take care of the long term side effects.

    Maybe we should start another CSN site for Head and Neck Long term survivor Help.

    John

    Long-term survivor pack
    John

    I really like the sound of that. I'm going to join up. I plan to be one, right along with you.

    Deb
  • Greend
    Greend Member Posts: 678
    #9
    Hondo said:

    Same here

    9 years from first rad and 6 from second rad and chemo treatment. Voice is just about gone and pain from the nerve coming down the left side of the head into the neck. Loss about 90% of hearing in both ears, All this just started about 9 months ago. Now high and low blood pressure problem

    Still alive, I you find anything that helps please let us know.

    Welcome to CSN, Take care and keep posting
    Hondo

    Hondo - Nerve pain medicine
    My Dr prescribed a drug that is "made" for trigeminal nerve damage which is what I would bet most have. It is Carbamazepine; if you haven't yet you might want to try it out.

    Denny
  • Greend
    Greend Member Posts: 678
    #10
    D Lewis said:

    Long-term survivor pack
    John

    I really like the sound of that. I'm going to join up. I plan to be one, right along with you.

    Deb

    Forgot this
    I know I'm sending these back to back but what the hey. I also had a problem with the pressure in my right ear, it felt like I was in an airplane all the time and it affected my ability to wear my right hearing aid. A doctor finally recommended I take Mucinex. Now that stuff is expensive and it is also time released so I couldn't chew up the pill (no way I can swallow pills of any size these days) but I did find a store brand (look at the ingrediants) at Walgreens with the same stuff and it clears up the pressure about 60% of the time which is great. I have since gotten a generic prescription so my insurance covers the cost.

    Another tip: in Alabama if you buy a prescription it is tax free. My insurance won't cover my generic Ensure but by getting it as a prescription I 1) save 10% on sales tax and 2) it shows up on my list when I do my federal taxes since it is a prescribed medication.

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