Tired Of Fealing Bad

Dav1965
Dav1965 Member Posts: 132
in Head and Neck Cancer #1
I had stage 4 tongue cancer in 2010 They replaced about 7/8 of my tongue with my thigh and all the tissue in my mouth from the tongue down. I also had a double neck dissection with cancer in 38 lymph nodes. I had cisplatin for chemo and radiation. I had 76 grey radiation.

Now on to 2012 my jaw still hurts from radiation eating my left jaw bone. Plus radiation made a cyst in my left jaw bone. My ears ring all day every day. Radiation killed my salava gland and my thyroid gland. I only swallow now when i think about it.

I take 30 mg of morphine in the mourning and night along with 6 oxycodones a day. I have crazy pain in my feet, hands, jaw, and my knees.

Any ideas on anything i can do to feel better i am tired of hurting every single day.

Thanks David

Comments

  • Hard12Find
    Hard12Find Member Posts: 218 Member
    #2
    Dav
    Can'y really offer any suggestions on pain, sounds like you really had a rough go round with the beast. I will be glad to put you on a prayer list if you would like....sounds like you could use a miricle right now. I can relate to being tired of the beast...tired of dr's appointments, ringing in my ears, nausea, fatigue , feeding myself a liquid diet through a tube. no two ways about this HN cancer really sucks. Try to keep your spirits up, and work with your medical dr on pain management options. Have you tried any naturopathic releif like accupuncture etc?? Just a thought...
    Jim
  • Hard12Find
    Hard12Find Member Posts: 218 Member
    #3
    Dav
    Can'y really offer any suggestions on pain, sounds like you really had a rough go round with the beast. I will be glad to put you on a prayer list if you would like....sounds like you could use a miricle right now. I can relate to being tired of the beast...tired of dr's appointments, ringing in my ears, nausea, fatigue , feeding myself a liquid diet through a tube. no two ways about this HN cancer really sucks. Try to keep your spirits up, and work with your medical dr on pain management options. Have you tried any naturopathic releif like accupuncture etc?? Just a thought...
    Jim
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    the pain can be managed
    but it needs adressed very specifically. it may require referral to a pain specialist. you also might PM Hondo. He deals with many if the same issues as you do. He is often around, but I havent seen him post for a day or two.

    Pat
  • katenorwood
    katenorwood Member Posts: 1,912
    #5
    longtermsurvivor said:

    the pain can be managed
    but it needs adressed very specifically. it may require referral to a pain specialist. you also might PM Hondo. He deals with many if the same issues as you do. He is often around, but I havent seen him post for a day or two.

    Pat

    Pain management
    David,
    I am so sorry you're going through all of this ! But I am an avocate of pain control period. If we don't control it, it controls us. Please check into this asap...and keep us posted on how you're doing. Katie
  • dales2loud
    dales2loud Member Posts: 45
    #6
    Dang
    You have been through the ringer and back, my heart goes out to you. If I had a Majic pill I would give it to you, but all I have is prayer to offer.
    I hope you start feeling better soon.

    Dale Wilkes
  • josh r.
    josh r. Member Posts: 264 Member
    #7
    painful
    Hi Dave,
    I am sorry for your terrible situation and I do not have medical answers for you, or any answers at all for your pain. I am a 20 plus year servivor of stage iv throat cancer that has never approached what you have describe and I can only pray for you and let you know that I and so many are in your "corner' through your fight. God Bless, Josh r.
  • Pam M
    Pam M Member Posts: 2,196
    #8
    Wow
    From time to time when I'm feeling sorry for myself, I see a post from someone like you - and it puts my minor complaints in perspective.

    I would go for broke - if I could meet up with a pain specialist AND a naturopath, I'd do both. I hope you find someone/something that can help ease your burden.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #9
    Hurts to read a post such as your David
    ...I have not been in a long term situation of pain such as your...on 6-7 Narco a day and 2 fentynal patches. I would assume you have tried Fentynal Patches? My pharmicist sugested I try Ultram while I was taking the Narco bc I complained about how the Narco made me feel so blah and only kept the pain at bay a short period....After taking Ultram I could get away with 1 for every 6-7 hours and not feel that crappy feeling I got with the Narco...and the Fentynal I hear ( no doctor disclaimer) is much stronger than morphine....anyway...I was hesitant to share thinking you probably have tried all the above already...

    But I did and I will whisper a prayer you get remedy on this very soon my fellow warrior..


    Best,

    Tim
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #10
    bone pain
    Some of what you are dealing with is bone pain and that is tough stuff.

    Although his pain is from nerve damage due to radiation, Jim has used morphine and Fentanyl in the past: he now uses Butran patch, Neurontin, Cymbalta and Percocet for breakthrough pain.

    The pain specialist Jim uses believes in the layered approach and for the most part it seems to work for Jim.

    I'm sorry you are having such a rough go of it. Remember there are always different things to try - I know you've probably tried many different pain control methods - just keep looking. Between time, healing and the different medications, you will find the right one for you.
  • Butterflygirl4
    Butterflygirl4 Member Posts: 4
    #11
    Pain
    I to would like to know if this is normal. One year out and I am still in so much pain. Neck, hands, feet low back basically all over. Fatigue. Is this normal?
    I was also stage four. I feel like I am still going through cancer. I don't like to think about this but it's a daily fight. When am I going to feel normal, I am only in my forty's.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    Butterflygirl4 said:

    Pain
    I to would like to know if this is normal. One year out and I am still in so much pain. Neck, hands, feet low back basically all over. Fatigue. Is this normal?
    I was also stage four. I feel like I am still going through cancer. I don't like to think about this but it's a daily fight. When am I going to feel normal, I am only in my forty's.

    No this is not normal
    It is one thing to have pain that clearly relates to an area which has been treated. It is quite another thing to have pain which relates to sites not directly effected by our treatments. You need a thorough work up. Something else is going on. Whatever it is needs proper diagnosis. Then they can successfully treat you. I say this because you relate back, feet and hand pain--- areas distant from any cancer related treatment. I would think to return to your primary care provider with these complaints would be a reasonable place to start.

    Best

    Pat

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