New to forum help for pain

Vikeman10
Vikeman10 Member Posts: 62
in Head and Neck Cancer #1
Hello to all I am new to the forum, but have followed different cancer forums on and off for the past couple years. I just finished Erbitux and 7 weeks of radiation, so am on my way to recovery. Will have scans in a few months and hope for the best then. Having a lot of pain from the radiation, and it has made skin around my tracheostomy very raw and sore. My radiation oncologist has told me to use a foam pad around it for drainage, but no lotions or ointments as it needs to stay dry to heal.I am on liquid oxycodone for pain and ibuprofen for swelling, but still painful even with maximum dosage. Anyone with a suggestion?

Randy

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    pain medication
    can be titrated according to need. There are a number of ways to go beyond oxy for control of severe pain. Some of the better systems would use a skin patch, like fentanyl, and supplement with an oral drug like oxy or MS contin for breakthrough. Your rad onc doctor is experienced at doing this, so I would get ahold of his office tomorrow.

    welcome to the group. wish your circumstances were better.


    Pat

    PS. I just read your bio. Wow, youve had a tough time. Is your cancer rhabdomyosarc this time?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Welcome Randy Man...
    I can't offer much in the way of your question....though I did go through sixteen weeks of chemo and seven of that like you was concurrent with weekly chemo and rads... STGIII SCC Tonsils - HPV+.

    But I can offer a welcome, and this is one of if not the best survivor forum out there...

    Awesome people, tons of knowledge and all about sharing experiences...

    Others will chime in that can answer your questions. In the mean time, here is a link to our SuperThread which has tons of great info and links all contributed by the many here;

    SuperThread

    Best,
    John
  • Vikeman10
    Vikeman10 Member Posts: 62
    #4
    longtermsurvivor said:

    pain medication
    can be titrated according to need. There are a number of ways to go beyond oxy for control of severe pain. Some of the better systems would use a skin patch, like fentanyl, and supplement with an oral drug like oxy or MS contin for breakthrough. Your rad onc doctor is experienced at doing this, so I would get ahold of his office tomorrow.

    welcome to the group. wish your circumstances were better.


    Pat

    PS. I just read your bio. Wow, youve had a tough time. Is your cancer rhabdomyosarc this time?

    Pat,
    Thanks for the
    Pat,
    Thanks for the response, my doctor had told me that I had to be in more pain than I was telling them. The pain really started to increase this past weekend, so I should have known and asked for something stronger just in case. I have physical therapy on tuesday so will stop by doc's and get something then. As for the cancer this time it is squamous cell carcinoma, so not the rhabdo. As for having tough time I like to think of it as little detours and speed bumps!

    Randy
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    puts out the fire
    Hi Vikeman10,

    I also rode the Erbitux bus along with radiation. The worst pain I endured through everything was the neck burn. My throat was a blaze, but I could stand that. For my neck I was prescribed Silver Sulfadiazine, it was fantastic. I would smear it around my neck till it looked like I was wearing a turtle neck. No more pain, no kidding. It messed up the tee shirt I was wearing and my pillow case, but the relief was nothing short of incredible. If anything, it made my neck heal faster. My neck was burned up during weeks 6, 7, & 8. The application of the Silver Sulfadiazine was like a second skin. Buy the 400 mg container, I used up the 50 mg ones too fast.

    If your burn included your chest (like Tim) then I am not sure what to do.

    Best,

    Matt
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #6
    CivilMatt said:

    puts out the fire
    Hi Vikeman10,

    I also rode the Erbitux bus along with radiation. The worst pain I endured through everything was the neck burn. My throat was a blaze, but I could stand that. For my neck I was prescribed Silver Sulfadiazine, it was fantastic. I would smear it around my neck till it looked like I was wearing a turtle neck. No more pain, no kidding. It messed up the tee shirt I was wearing and my pillow case, but the relief was nothing short of incredible. If anything, it made my neck heal faster. My neck was burned up during weeks 6, 7, & 8. The application of the Silver Sulfadiazine was like a second skin. Buy the 400 mg container, I used up the 50 mg ones too fast.

    If your burn included your chest (like Tim) then I am not sure what to do.

    Best,

    Matt

    Welcome Randy....
    sorry you have to be in the club ....

    I too had radiation and Erbitux only ...no surgery or platninum chemo...you should take a look at the picture on my "expressions" and see my neck ...I was burned up pretty bad.

    I wore two (2) Fentynal patches and took 6 Narco 10mg/ 500 a day at my worst ..and still took two advil every 4-6 hours ...man do I remember that pain!!!

    It does get better .......talk to you doctor and let them know you need more / better pain relief....they will help.

    Best,

    Tim
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    Vikeman10 said:

    Pat,
    Thanks for the
    Pat,
    Thanks for the response, my doctor had told me that I had to be in more pain than I was telling them. The pain really started to increase this past weekend, so I should have known and asked for something stronger just in case. I have physical therapy on tuesday so will stop by doc's and get something then. As for the cancer this time it is squamous cell carcinoma, so not the rhabdo. As for having tough time I like to think of it as little detours and speed bumps!

    Randy

    Randy
    I would say you have good reason to be optimistic. SCC has a much better prognosis than rhabdo. Your sudden pain increase is predictable. Dont be shy about telling them, "well, now Ive got the kind of pain you were talking about.". they should noypt judge you for this. My rad oncologist is a very human person. He always made darned sure I had adequate pain control. i never felt like I was begging.
  • Vikeman10
    Vikeman10 Member Posts: 62
    #8
    Tim6003 said:

    Welcome Randy....
    sorry you have to be in the club ....

    I too had radiation and Erbitux only ...no surgery or platninum chemo...you should take a look at the picture on my "expressions" and see my neck ...I was burned up pretty bad.

    I wore two (2) Fentynal patches and took 6 Narco 10mg/ 500 a day at my worst ..and still took two advil every 4-6 hours ...man do I remember that pain!!!

    It does get better .......talk to you doctor and let them know you need more / better pain relief....they will help.

    Best,

    Tim

    Tim,
    Thanks for response
    Tim,
    Thanks for response as my pain just came all at once, so wasn't expecting it. My burn is nothing compared to yours "ouch" I have some just around my tracheotomy opening. Very stiff neck and swallowing is next to impossible with the burning pain. Glad to see you are doing well and scans looking good.

    Randy
  • hwt
    hwt Member Posts: 2,328 Member
    #9
    Vikeman10 said:

    Tim,
    Thanks for response
    Tim,
    Thanks for response as my pain just came all at once, so wasn't expecting it. My burn is nothing compared to yours "ouch" I have some just around my tracheotomy opening. Very stiff neck and swallowing is next to impossible with the burning pain. Glad to see you are doing well and scans looking good.

    Randy

    Patch
    My radiologist made it clear that there were strict regulations on the fentynal patch. If you have tried alternatives without relief let your doctor know how severe the pain is and ask for it. I started with 25mg patch supplemented with hydrocodone and went to 50mg patch. 50mg patch was too much for me and made me shake so I dropped back after just 1 week. Good luck

Discussion Boards