Base of tongue cancer

catfish_58
catfish_58 Member Posts: 138 Member
in Head and Neck Cancer #1

I myself have been battling cancer in throat since 2013, had a billateral neck dissection, a few years ago I had a ulcer come up on the base of tongue and after consulting my doctor I was told that this was just an ulcer, well after about 4 months they finally did a biopsy, and found out that I had cancer on base of tongue, was told I would lose tongue and not be able to talk, went to MD Anderson for second opinion, went through Keytruda for a little over a year which helped at first then it stopped working, went through peg tube placement, then started Hyperbaric Oxygen Treatments, don't think that worked at all, then went through clinical trial of high radiation treatments, which they claimed they had gotten it all, but could still see small amount on CT Scan, somewhere around six months later was told it was back and very aggressive, then was trying photo immunotherapy, which I had developed Trismus from the radiation treatment, which is lockjaw, had three treatments and they decided that due to the Trismus they couldn't finish it , shame because that seemed to be working too, now I am having a port put in for dual chemo to try to get rid of this tumor, if it doesn't then maybe it'll give enough time for another clinical trial, if not then I tried and gave some input on these clinical trials, am now not able to speak, eat, have a trachea for breathing, and soon have a port, but I do know that there are others that has it worse than me and I may have it worse than others, but glad I at least am having this time to spend with family, I was told that I would lose my hair and probably at least get to feeling better after second treatment, sure hope so, I'm taking 6 pills a day of Hydrocodone 10 and have a patch on too, just like to know what's ahead for me with this dual chemo, hair loss, what to expect, appreciate all input, thank you 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #2
    catfish My Friend

    My heart goes out to ya.
    January 2013 is when I started treatment for the same, throat cancer.
    I beat my cancer by my team applying chemo and radiation.
    5 years later I had tongue cancer and it was operated on and ENT had clear margins.
    I had developed soreness in my neck about 1 1/2 years later and in Sept. of 2019, I was operated on in Hershey Medical for lymph cancer not encapsulated in the node.
    That's the basic story although the complete story is pretty involved.
    You sir have had a complete war going on with this evil cancer and it seems it won't let you alone.
    It looks like you have had the gamut of treatments and by now like a lot of us are no stranger to major medical experience.
    Wishing You The Best on this dual chemo thing and I hope this is the answer for you.
    You are correct you certainly have it a lot worse than many others but I feel like you do I have had my times of cancer and treatment and my share of leftover effects from treatment, and it's always in the back of our minds somewhere, all of us, is it going to come back someday, but like you, I know there are others much worse off and be thankful for what I have and where I'm at.
    Yes continue enjoying time with your family and enjoy life as you have been dealing with everything that comes at you and bouncing back to fight one more day.
    You've been here long enough to know on here we say NEGU (Never Ever Give Up) and you sir are the shining example of that.

    Wishing You The Best-Take Care-God Bless-Russ

  • catfish_58
    catfish_58 Member Posts: 138 Member
    edited August 2021 #3
    wbcgaruss said:

    catfish My Friend

    My heart goes out to ya.
    January 2013 is when I started treatment for the same, throat cancer.
    I beat my cancer by my team applying chemo and radiation.
    5 years later I had tongue cancer and it was operated on and ENT had clear margins.
    I had developed soreness in my neck about 1 1/2 years later and in Sept. of 2019, I was operated on in Hershey Medical for lymph cancer not encapsulated in the node.
    That's the basic story although the complete story is pretty involved.
    You sir have had a complete war going on with this evil cancer and it seems it won't let you alone.
    It looks like you have had the gamut of treatments and by now like a lot of us are no stranger to major medical experience.
    Wishing You The Best on this dual chemo thing and I hope this is the answer for you.
    You are correct you certainly have it a lot worse than many others but I feel like you do I have had my times of cancer and treatment and my share of leftover effects from treatment, and it's always in the back of our minds somewhere, all of us, is it going to come back someday, but like you, I know there are others much worse off and be thankful for what I have and where I'm at.
    Yes continue enjoying time with your family and enjoy life as you have been dealing with everything that comes at you and bouncing back to fight one more day.
    You've been here long enough to know on here we say NEGU (Never Ever Give Up) and you sir are the shining example of that.

    Wishing You The Best-Take Care-God Bless-Russ

    Hello Wbcgaruss, thanks for

    Hello Wbcgaruss, thanks for the words of encouragement, sometimes we just get frustrated at all this junk, I'll be glad to finally see that cure for this, but I do know that if it wasn't  for others doing these clinical trials that I or others probably wouldn't be here right now, so I do appreciate that, but yes I will do that NEGU, have a good day, did you by chance have a port put in? Was wondering about how long after they install that do they finally start your Chemo treatments? 
    Thanks again

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #4
    Yes Catfish

    I had a port and was glad I did.
    I would imagine when they can start using it is up to your med team.
    There is an incision on your chest that will heal and you will hardly know it's there.
    I would say unless they want it healed a bit it could probably be used almost right away.
    catfish it's not hard to get discouraged a lot of times when every time you turn around it's something else.
    My last hospital stint in Hershey Medical ended up having some difficulties and one thing after the other going on.
    I ended up spending 36 days there and 10 days at a hospital rehab before going home.
    At one point in the hospital I just fully turned it over to the Lord and figured I was not going to see home again.
    But He had other plans and I made it home.
    So I have learned he is always beside you and don't wait to turn your situation over to God just live that way.
    And don't suppose you know the next step.
    I figured I was going to die in the hospital or go to a hospice but here I am at home and came home about November 6, 2019.
    Take Care-God Bless-Russ

     

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