Scan Results!!! Not what I expected to hear!

Djinnie
Djinnie Member Posts: 945 Member

Well I have my results and they are not good. The Votrient had stopped working unfortunately I have 30% growth, the lymph in my chest is huge and wrapped tightly around my windpipe, leaving little room to breath. The speed at which the Cancer is growing the pindpipe could be engulfed in a matter of weeks. I have been advised to get my affairs in order as I am looking at maybe one to two months. No drug is available to work quick enough to stall the growth. I wasn't expecting such dire news I can tell you. The good news is there is no mets on the brain, I suppose I should be thankful for small mercies!

Anyway! You have been amazingly supportive to me since I joined in 2013, I want to thank you all from the bottom of my heart. I am going to shut down my membership now, I don't want to play this out on the site it would be too much. I wish the very best to you all and pray with all my heart that you all overcome this awful disease.

Much love to you all:)

Djinnie x

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Comments

  • Allochka
    Allochka Member Posts: 1,060 Member
    I'm so sorry to hear these

    I'm so sorry to hear these news... But do not give up yet! Is there ANY kind of surgery which can free the windpipe? Is it possible to get another opinion? When given such  prognosis, you don't risk anything even if you agree to the most risky surgery.

    Is it possible to do anything to keep fighting?

  • Djinnie
    Djinnie Member Posts: 945 Member
    Allochka said:

    I'm so sorry to hear these

    I'm so sorry to hear these news... But do not give up yet! Is there ANY kind of surgery which can free the windpipe? Is it possible to get another opinion? When given such  prognosis, you don't risk anything even if you agree to the most risky surgery.

    Is it possible to do anything to keep fighting?

    I will fight for as long as I can!

    Hi Allochka, 

    Thank you for your kind words, I appreciate it. Unfortunately because the lymph is wrapped around my windpipe and main nerves and arteries they can't operate. My Oncologist checked with the  main board of Oncologists in Paris and there is no procedure available, it is too dangerous. They have given me Afinitor but they don't believe it will work quick enough to forstall the closure of the windpipe. I will continue to live in hope though, and will do my best to continue to fight this crappy disease.

     

    Djinnie x 

  • Djinnie said:

    I will fight for as long as I can!

    Hi Allochka, 

    Thank you for your kind words, I appreciate it. Unfortunately because the lymph is wrapped around my windpipe and main nerves and arteries they can't operate. My Oncologist checked with the  main board of Oncologists in Paris and there is no procedure available, it is too dangerous. They have given me Afinitor but they don't believe it will work quick enough to forstall the closure of the windpipe. I will continue to live in hope though, and will do my best to continue to fight this crappy disease.

     

    Djinnie x 

    Djinnie, I am so sorry to

    Djinnie, I am so sorry to read your post.  Don't give up hope, and I am counting on a miracle for you.  Often times, doctors' dire predictions are incorrect, and let's hope they are wrong.  Keep that beatiful smile. 

  • APny
    APny Member Posts: 1,995 Member

    Djinnie, I am so sorry to

    Djinnie, I am so sorry to read your post.  Don't give up hope, and I am counting on a miracle for you.  Often times, doctors' dire predictions are incorrect, and let's hope they are wrong.  Keep that beatiful smile. 

    Djinnie, I'm hoping with

    Djinnie, I'm hoping with everything I have that there will be a miracle for you and what they're predicting is not going to happen. You are in my thoughts and prayers.

  • Srashedb
    Srashedb Member Posts: 482 Member
    So so sorry

    your post was awful to wake up to this morning; cannot imagine what it feels like for you.

    it is understandable that you want to shut it down here but perhaps your daughter or other family member can let us know how you're doing.

    the affinitor (if I am not mistaken) worked on Nano; so, please keep yourself upbeat.

    i hate that you are going through this.

    Sarah

  • BellaBinksMom
    BellaBinksMom Member Posts: 78
    Don't give up hope

    This is certainly not good news.  Would they be able to put you on a ventilator of some type to give an alternative treatment time to work?  I am so sorry and there are no words that come to me that would be of any use to you other than to offer you my prayers and sincere hope for a miracle.  You have been a very kind and supportive board member for me during my short time here.  Wishing you peace and comfort during this trying time.

     

    Hugs.

    Debbie

  • Allochka
    Allochka Member Posts: 1,060 Member

    Don't give up hope

    This is certainly not good news.  Would they be able to put you on a ventilator of some type to give an alternative treatment time to work?  I am so sorry and there are no words that come to me that would be of any use to you other than to offer you my prayers and sincere hope for a miracle.  You have been a very kind and supportive board member for me during my short time here.  Wishing you peace and comfort during this trying time.

     

    Hugs.

    Debbie

    If surgery is not an option,

    If surgery is not an option, than definitely try any medicine available. please simply just refuse to give up! My friend's dad was diagnosed with Stage 4 cancer somewhere in his neck and docs didn't give him much hope. well, he is NED now! Just please go on fighting, and we will be here for you...

  • Dave418
    Dave418 Member Posts: 95 Member
    Don't give up and keep

    Don't give up and keep fighting ! Like Fox, you are one of the most supportive members on this site. You've helped and comfort so many. I really hope you'll find the strength and courage to go trough this. 

    Best of luck! 

    Hope to hear from you again soon

    Dave

  • I am alive
    I am alive Member Posts: 315
    Djinne,
    I am shocked and

    Djinne,

    I am shocked and saddened at your news. I don't know what to say other than are you sure you want to shut down your membership here? It gives you a place to unload, to be heard, to feel our arms wrapped around you. Ahhhhhh Djinnie, Djinnie, Djinnie. It has been  OUR privilege to know YOU, our joy to receive your love and compassion and heartfelt advice. What are you going to do now? Is there hospice in France? How are you feeling? Please know that you are in my prayers - now and always. We are with you.

  • Footstomper
    Footstomper Member Posts: 1,237 Member

    Djinne,
    I am shocked and

    Djinne,

    I am shocked and saddened at your news. I don't know what to say other than are you sure you want to shut down your membership here? It gives you a place to unload, to be heard, to feel our arms wrapped around you. Ahhhhhh Djinnie, Djinnie, Djinnie. It has been  OUR privilege to know YOU, our joy to receive your love and compassion and heartfelt advice. What are you going to do now? Is there hospice in France? How are you feeling? Please know that you are in my prayers - now and always. We are with you.

    Beat the odds

    Devastating news. I hope you can find comfort in being with the one you love and that they can find comfort in you. Hang on in there, However high the odds stacked against you, there is always hope.

    We will be thinking of you

  • foroughsh
    foroughsh Member Posts: 779 Member
    So sorry to hear this news, i

    So sorry to hear this news, i dodn't know what to say, you're one of the first ones in this board who gave me positive thoughts and hope to fight it. I'm wishing you a miracle,and best time with your dear ones, you are my hero. Sending you prayrr s and positive vibes, Forough

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    foroughsh said:

    So sorry to hear this news, i

    So sorry to hear this news, i dodn't know what to say, you're one of the first ones in this board who gave me positive thoughts and hope to fight it. I'm wishing you a miracle,and best time with your dear ones, you are my hero. Sending you prayrr s and positive vibes, Forough

    I am wordless

    i consider it an honor to know you.  Your courage and humor have set a high bar for all of us.  I shall be thinking about you.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    foroughsh said:

    So sorry to hear this news, i

    So sorry to hear this news, i dodn't know what to say, you're one of the first ones in this board who gave me positive thoughts and hope to fight it. I'm wishing you a miracle,and best time with your dear ones, you are my hero. Sending you prayrr s and positive vibes, Forough

    My dear~ HUGS!!!!
    Let this

    My dear~ HUGS!!!!

    Let this news be absorbed and do whatever YOU want to do!

    YOU get to decide how to proceed, not us.

    YOU get to figure things out for what is best for you.

    This isn't about us, or what WE want for you.

    It is about YOU!! Your family and YOUR wishes!

    Please if you could allow us one thing.

    Could your daughter or someone let us know how you are doing?

    If you want to let us to know. I leave that up to you.

    Sending you the warmest, most loving hug, with prayers to help you through all this.

    Your friend, Jan

     

  • firedude21
    firedude21 Member Posts: 52
    So sorry to hear your news

    Djinnie -

    Please don't give up and please don't shut down your membership. Get another opinion, try one of the new drugs available off label. You are so special on this forum so please hang in there with your membership. I am not a religious man but I will be praying for you.

     

    firedude21

     

    p.s. - After I wrote this I read Jan4you's post. What she says makes a lot of sense. I think maybe I'm just at a loss for the right words.  

  • donna_lee
    donna_lee Member Posts: 1,041 Member

    So sorry to hear your news

    Djinnie -

    Please don't give up and please don't shut down your membership. Get another opinion, try one of the new drugs available off label. You are so special on this forum so please hang in there with your membership. I am not a religious man but I will be praying for you.

     

    firedude21

     

    p.s. - After I wrote this I read Jan4you's post. What she says makes a lot of sense. I think maybe I'm just at a loss for the right words.  

    Not speechless, but deeply saddened by the news. What a devastating blow to you and your family; and for the rest of us as we have traveled along with you on your journey.

    I do agree with Jan...this is your time to focus on yourself and allow the hand you were dealt to play out.  If there is hope without pain, grab for it.  But what ever happens, know that we all love you and would wish only the best.

    And please, have some one post for you.  There is a sense of extended family on this board, and closure becomes vital.

    Love and hugs.

    Donna

  • foxhd
    foxhd Member Posts: 3,181 Member
    donna_lee said:

    Not speechless, but deeply saddened by the news. What a devastating blow to you and your family; and for the rest of us as we have traveled along with you on your journey.

    I do agree with Jan...this is your time to focus on yourself and allow the hand you were dealt to play out.  If there is hope without pain, grab for it.  But what ever happens, know that we all love you and would wish only the best.

    And please, have some one post for you.  There is a sense of extended family on this board, and closure becomes vital.

    Love and hugs.

    Donna

    DJ

    I love you DJ. I'm fighting for you too. Keep the pilot light lit.

    FLY.

  • Limelife50
    Limelife50 Member Posts: 476
    So Sorry

    I respect your decision but hope maybe along the way you could let us know how you are doing, Peace Be With You

  • icemantoo
    icemantoo Member Posts: 3,361 Member

    So Sorry

    I respect your decision but hope maybe along the way you could let us know how you are doing, Peace Be With You

    We need you

    Djinne,

     

    We need Fox and you to help with the tough journies. I can only try and help with the ametures and the kid's stuff not the real challanges like Fox and you.

     

    So stick  around.

     

     

    Icemantoo

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    icemantoo said:

    We need you

    Djinne,

     

    We need Fox and you to help with the tough journies. I can only try and help with the ametures and the kid's stuff not the real challanges like Fox and you.

     

    So stick  around.

     

     

    Icemantoo

    Djinnie

    Dear, sweet Djinnie,

    We love you and will be here to support you in any way you need.

    Our hearts are breaking for our dear, sweet friend.

    Lots of love,

    Jojo

     

  • Billy's Wife
    Billy's Wife Member Posts: 52
    Dearest Djinnie,
    You are the

    Dearest Djinnie,

    You are the voice of comfort, sanity, good sense and good humor to all those who visit this sight in their time of need.  Thank you for being so willing to share with such forthright honesty.  Jan is right this is about YOU and no one else.  I wish you peace and the very best to you and to your family.

    I am very grateful to you.  YOU make a difference  to all you come in contact with.  I will be praying for you. 

    With Much Love,

    Arleen