Just got my not so great MRI results

Spazactaz
Spazactaz Member Posts: 15
in Head and Neck Cancer #1
Cancer is still present in my brain and neck, and the tumor is still in my face. It has shrunk to about half the size it was though. But basically I am terminal? as there are no other treatment options currently available for adenoid cystic carcinoma. :( I did the 30 radiations.

i'm only 24, this sucksssss. what do you guys think of alternative therapies? any that may work for ACC?

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    I have a son your age
    and I am saddened by your diagnosis and totally agree that it suckssssss! I don't know much about ACC but certainly would explore any alternative that has shown success. This is the time when a group setting with members in advanced stages of disease can be comforting for you. Is there a head and neck group in your area?? why don't you call, SPOHNC, "Support for people With Head And neck Cancer" SPOHNC 1-800--377-0928. You might also check the Oral cancer Forum or OCF as it's known online and ask questions there. Perhaps someone is currently in some clinical trial that they can direct you to? I admire you even posting here as it must take great courage and fortitude. May you find a moments peace today.
  • Billie67
    Billie67 Member Posts: 898
    #3
    ratface said:

    I have a son your age
    and I am saddened by your diagnosis and totally agree that it suckssssss! I don't know much about ACC but certainly would explore any alternative that has shown success. This is the time when a group setting with members in advanced stages of disease can be comforting for you. Is there a head and neck group in your area?? why don't you call, SPOHNC, "Support for people With Head And neck Cancer" SPOHNC 1-800--377-0928. You might also check the Oral cancer Forum or OCF as it's known online and ask questions there. Perhaps someone is currently in some clinical trial that they can direct you to? I admire you even posting here as it must take great courage and fortitude. May you find a moments peace today.

    So sorry
    I am also so sorry to hear this news. I do not know a whole lot about this cancer however cancer.net does list several places where clinical trials are going on. Just type in your type of cancer and scroll thru each page and you will find the info.
    I wish you all the luck in finding a trial that is just right for you, I'm hopeful you will find it.
    Continue to have faith know that you are in my thoughts.
    Billie
  • meaganb
    meaganb Member Posts: 244 Member
    #4
    Hi! I am 27 and also had
    Hi! I am 27 and also had ACC. Cancer is so awful. Luckily right now I have had clear scans but I always have the lingering thoughts of will it come back. I would look into clinical trials if I was in your position. I'm not sure what part of the country you're in but I know their is currently a trial at the university of Virginia specifically treating people with metastatic ACC. I am so sorry you're having to go through this. You will be in my prayers!
  • hwt
    hwt Member Posts: 2,328 Member
    #5
    ratface said:

    I have a son your age
    and I am saddened by your diagnosis and totally agree that it suckssssss! I don't know much about ACC but certainly would explore any alternative that has shown success. This is the time when a group setting with members in advanced stages of disease can be comforting for you. Is there a head and neck group in your area?? why don't you call, SPOHNC, "Support for people With Head And neck Cancer" SPOHNC 1-800--377-0928. You might also check the Oral cancer Forum or OCF as it's known online and ask questions there. Perhaps someone is currently in some clinical trial that they can direct you to? I admire you even posting here as it must take great courage and fortitude. May you find a moments peace today.

    Clinical trials
    Saddened to hear. On the left side of the CSN menu in the blue portion is a link "Clinical trials finder". Don't give up looking for a solution. My cousin was told to get his affairs in order due to a melanoma that had spread and he found a trial...happy to say it has been 8 years and he remains cancer free. Your youth will be to your advantage.
    God Bless
  • katenorwood
    katenorwood Member Posts: 1,912
    #6
    Don't give up ever !
    spazactaz,
    hey just saw your post. I sent you some info by private mail. If you don't get it let me know ! Also I have a link I want you to read for inspiration....about a little gal from Australia....www.epsi.com.au Adcc plainly sucks....but saying this there is hope out there ! Keep fighting hard ! I will be thinking of you, and know that right now you're full of anxiety and just plainly pissed. Get referred to a specialist in adenoid cystic carcinoma like now ! Keep us all posted....much strenghth being sent your way ! Katie
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #7
    keep the faith
    Spazactaz,

    That’s a rough diagnosis, maybe the time to reach out for second or third opinion or find the Top Dog in the field (cancer specific). Bless you and the journey you are on.

    Best,

    Matt
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    Hi Spaz...
    Sorry to hear that news as well....

    Like mentioned, I would definitely seek other opinions, facilities and/or trials. I'm not usually big on alternative medicine other than in a case of no other choices. You are at a place that your choices are very limited, do what you have to do to take care of yourself and survive.

    Thoughts and prayers,
    John
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #9
    Skiffin16 said:

    Hi Spaz...
    Sorry to hear that news as well....

    Like mentioned, I would definitely seek other opinions, facilities and/or trials. I'm not usually big on alternative medicine other than in a case of no other choices. You are at a place that your choices are very limited, do what you have to do to take care of yourself and survive.

    Thoughts and prayers,
    John

    Miricles.
    I can't really add to what as already been said about Trials and
    never giving up but all I can say is have faith, God preforms miricles
    everyday, I pray he send one your way.

    God bless
    Tonsil dad,

    Dan.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #10
    Tonsil Dad said:

    Miricles.
    I can't really add to what as already been said about Trials and
    never giving up but all I can say is have faith, God preforms miricles
    everyday, I pray he send one your way.

    God bless
    Tonsil dad,

    Dan.

    Hi Spaz ..
    Hate to hear your news, just hate it. Can't offer more than what's been said already...I've heard great things about trials going on...they often work out well and/or delay spread or even shrink cancer.

    I did whisper a prayer for you that a miracle could be for you...also to find strenght and comfort no matter what comes. It's all I can do though I wish terribly I could do more.

    Best,

    Tim
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #11
    Tim6003 said:

    Hi Spaz ..
    Hate to hear your news, just hate it. Can't offer more than what's been said already...I've heard great things about trials going on...they often work out well and/or delay spread or even shrink cancer.

    I did whisper a prayer for you that a miracle could be for you...also to find strenght and comfort no matter what comes. It's all I can do though I wish terribly I could do more.

    Best,

    Tim

    One More
    Hey Spaz,

    I have no advice to add, just some support. Reading your post really hit me emotionally. Thinking about what I've been through doesn't even compare to your daily battle. If I ever start to complain about side effects I'll think of you and shut up.

    Add me to the list of those praying for you to recover.

    Tommy
  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
    Damn!!!
    I am so sorry to hear of your results....this is where I'd be pushing my docs to start finding clinical trials....I'd be damned if I'd go out without a fight, and you hear about people in clinical trials still kicking after years...well worth it, I'd say.

    Hugs to you....and prayers going your way.

    p
  • cureitall66
    cureitall66 Member Posts: 913
    #13
    Never Give Up!
    You could be the first to blaze a new path.....Keep the fight up! Here is what I have found on ACC clinical trial contacts through the ACC Research Foundation if you haven't already been given this link. http://www.accrf.org/treatment-options/clinical-trials/current-studies/

    Hang in there kiddo. Keep searching for answers. We all are keeping the Faith and strength to fight this fight. We're here for you.

    Bless you,

    Cureitall66
  • Pam M
    Pam M Member Posts: 2,196
    #14
    This Truly Sucks
    Makes me cuss - hurts and pisses me off. I am so hoping that you can find a trial to join that will net good results. How cool to be able to see you post a few years from now "So don't give up - there's always hope".

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