Full removal of tongue any one experiencing this?

JRANESH1105
JRANESH1105 Member Posts: 3
edited March 2014 in Head and Neck Cancer #1
HI
I am looking for anyone that has more then 90% of there tongue removed due to cancer. My husband was first diagnosed in Jan 2009 with stage 1 cancer and had his first surgery Feb 2009. He had a small portion removed followed by 6wks of radiation to his neck because they also took out his lypmh nodes. He had a peg tube then too. He had lost about 30lbs. He took the tube out in July 2009 and began to eat soft foods again but he had continued pain and discomfort even though his PET scan came back clean. In Sept 2009 they found out that the radiation didn't work and the cancer continued to spread. He was then diagnosed with stage 4 cancer He had 13hr surgery which we thought was only going to be half the tongue but the surgeon said when she went in it was something totally different and she had to make a decision or else if they left it he would become inoperable in 2wks. He had to have his entire tongue removed, 1/3 of his jaw bone and the rest of lymph nodes. He is currently going through chemo and is very sick. He gets better the wk before chemo but then gets sick all over and he has dry mouth and this terrible cough due to mucus. He is back on his feeding tube. The DRs are saying he will be life dependent on it and will probably never eat again. I am looking for any hope out there. We have only been married a year and its very hard to deal and cope with. I am looking for comfort and information.

Thank you

JeN

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Jen

    I am Sorry that I can’t help you on this one but I can keep your husband in my prayers. There are a lot of others here on CSN that have had tongue cancer I will let them give you advice, take care and be strong.

    God bless you both
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #3
    JeN,
    Please read backward through the posts (and maybe even look at a member page or too). I would advise that you especially pay attention to posts and responses by myself and someone named SASH. We are both tongue cancer survivors of some longevity (he is at least eight years out now, and my surgery was in October of '05).

    That said and if you choose not to go back through posts, please know that dry mouth and mucous and a tube are all part of the territory.

    I still have a tube today, although I am working like hell to get rid of it at this very moment, and I still have occasional mucous moments, although they are not so common now and are easier to deal with in time.

    Dry mouth tends to go away, JeN, and SASH, as far as I know, is no longer on the tube even though he also got a major tongue removal.

    If you read previous posts and responses, you will find that people do many things to overcome their travails, some of them involving medications, some of them involving food groups, some of them simply a matter of will and good caregivers, or so it seems to me.

    I would advise, JeN, that you be patient, that you be accepting of any number of transgressions for the time being, and that you be sure to take care of the caregiver: that you find time for yourself so that you do not burn out.

    (FYI: I did not ask permission of this hondo character before responding.)

    Take care,

    Joe
  • JRANESH1105
    JRANESH1105 Member Posts: 3
    #4
    soccerfreaks said:

    JeN,
    Please read backward through the posts (and maybe even look at a member page or too). I would advise that you especially pay attention to posts and responses by myself and someone named SASH. We are both tongue cancer survivors of some longevity (he is at least eight years out now, and my surgery was in October of '05).

    That said and if you choose not to go back through posts, please know that dry mouth and mucous and a tube are all part of the territory.

    I still have a tube today, although I am working like hell to get rid of it at this very moment, and I still have occasional mucous moments, although they are not so common now and are easier to deal with in time.

    Dry mouth tends to go away, JeN, and SASH, as far as I know, is no longer on the tube even though he also got a major tongue removal.

    If you read previous posts and responses, you will find that people do many things to overcome their travails, some of them involving medications, some of them involving food groups, some of them simply a matter of will and good caregivers, or so it seems to me.

    I would advise, JeN, that you be patient, that you be accepting of any number of transgressions for the time being, and that you be sure to take care of the caregiver: that you find time for yourself so that you do not burn out.

    (FYI: I did not ask permission of this hondo character before responding.)

    Take care,

    Joe

    Thanks
    Thank you very much for both of you responding to me. It does give me hope to find people that have made it through there rough moments. I am patience and I will stand by husband through everything. But there is also comfort in reading people stories that have went through it. I will continue to read the posts and search on the site for more information. I wish you all the best in your recovery.
    Take care

    JeN
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    soccerfreaks said:

    JeN,
    Please read backward through the posts (and maybe even look at a member page or too). I would advise that you especially pay attention to posts and responses by myself and someone named SASH. We are both tongue cancer survivors of some longevity (he is at least eight years out now, and my surgery was in October of '05).

    That said and if you choose not to go back through posts, please know that dry mouth and mucous and a tube are all part of the territory.

    I still have a tube today, although I am working like hell to get rid of it at this very moment, and I still have occasional mucous moments, although they are not so common now and are easier to deal with in time.

    Dry mouth tends to go away, JeN, and SASH, as far as I know, is no longer on the tube even though he also got a major tongue removal.

    If you read previous posts and responses, you will find that people do many things to overcome their travails, some of them involving medications, some of them involving food groups, some of them simply a matter of will and good caregivers, or so it seems to me.

    I would advise, JeN, that you be patient, that you be accepting of any number of transgressions for the time being, and that you be sure to take care of the caregiver: that you find time for yourself so that you do not burn out.

    (FYI: I did not ask permission of this hondo character before responding.)

    Take care,

    Joe

    G’day Joe
    Sometimes you leave me to wander. If my prayers offend you that is a problem that you will have to live with, you don’t need my permission for anything here you are free to say anything you like. Also please understand I am not a character I am a human made in the image of my creator and friend who has saved me.

    I believe very strongly in the power of prayer because my walk with my Lord is that close, E-noch had walked so close with God that one day he walked right into heaven, he did that by his Faith in the one he called Friend.

    So Joe please feel free to say what you like I will not condemn you if that is what you are worried about. We are all free to say what we like, and that is a God giving privilege, so enjoy it while it last.

    We are all different and cancer has affected us all in different ways, my job it to help people, if it is only by being able to prayer for someone, then I have done the work God has sent me here to do.


    Faith in God is the greatest healer that there Joe better then any medicine you can buy and God offers it to us for free.
  • SASH
    SASH Member Posts: 421 Member
    #6
    Percentage of tongue removal
    Jen,

    I am sorry that you husband has to go through this and you also having to take this journey with him. While I didn't have that much of my tongue removed, it was only about 30% taken all from the base, instead of the 85-90% they thought they were going to have to take because when they went into do deep tissue biopsies all they found was scar tissue and dead cancer cells. In my case a combo of simultaneous weekly chemo and 46 rad treatments did their jobs. May 1 will be my 10 year anniversary of being NED, no evidence of disease. The dry mouth is still there, but not as bad as it used to be. This changed within the last 6 months, so it might last him a long time.

    While being on a feeding tube isn't the ideal, it is livable solution. I know of someone that has been living his life on his tube for the past 8+ years. Life is life and you make the best of it as you possibly can.

Discussion Boards