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

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

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

Allochka's picture
Allochka
Posts: 870
Joined: Nov 2014

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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's picture
APny
Posts: 1948
Joined: Mar 2014

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.

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Djinnie.  Please see my post to you on SmartPatients.  If you are one of the lucky ones (about 3% of patients) you can respond to Afinitor in a matter of just a few days.

 

Srashedb
Posts: 482
Joined: Dec 2013

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's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

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's picture
Allochka
Posts: 870
Joined: Nov 2014

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's picture
Dave418
Posts: 95
Joined: Aug 2014

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
Posts: 316
Joined: Jul 2012

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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's picture
foroughsh
Posts: 775
Joined: Oct 2014

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's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

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's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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
Posts: 52
Joined: Sep 2014

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's picture
donna_lee
Posts: 900
Joined: Feb 2009

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

FLY.

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

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

icemantoo's picture
icemantoo
Posts: 3219
Joined: Jan 2010

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's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

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

 

jason.2835
Posts: 337
Joined: Nov 2014

Djinnie,

Stranger things have happened; keep your thoughts positive.

This is a time when all that wonderful advice and empathy you have given can be returned right back to you. That's what this forum is. One big federal reserve of love. You deposit some, you withdrawal some. And the currency we deal in here is a heckuva lot more real that what USA is tossing around these days. 

from the newbies and early stagers on here who were losing their heads over every little ache and pain; we thank you for putting things into perspective for us. Those little nuggets of wisdom will be missed, but hopefully you'll be popping on here with some great news in a few weeks. I will keep the candle burning waiting for that. 

angelsnls
Posts: 67
Joined: Nov 2014

So sorry to hear your news as others say keep fighting we are here for you, sending big hugs and prayers to you.

Love angela x

Karen0074
Posts: 64
Joined: Apr 2014

Djinnie, I have been thinking of you.  Give the news a chance to settle in, I know you are a strong girl. Your advice has been invaluable on this site. Only you know what's best for you and your family and everyone will respect that. Everyone is here for you if you need to come back and let off a bit of steam. Keep fighting you are much loved.

 

Karen x

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

My Dear Friend DJinnie,

     You have always been the peaceful calming voice that would always help me to put things in prospective while fighting this dreadful disease.  I will be praying for that miracle for you and remember how much you have helped all of us with your wisdom and love!  Thank you Djinnie, you have helped me more than you will ever know!

                             Prayers for good health,

                             Love, Brenda

cran1's picture
cran1
Posts: 139
Joined: Mar 2013

Had to close the door so the kids wouldn't see the tears in my eyes. I don't have the words. My thoughts and my family's thoughts will be with you. I wish you all the best. And I will see you on the flip side. 

Christopher.

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Dj. Have had you on my heart a heap lately but have been unable to get online. Thankyou so very much for the way you have supported and encouraged us all. I  have been more grateful than you could know. I so wish your news was better. You deserve such better news. I will be praying for you and please come back online if I can support you at all in any way.  You will be terribly missed but time is precious and you deserve to spend it with your loved ones.

Peace and blessings and much love to you.

 

Melissa xox

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Sorry for the late response, I think I crawled under a rock on Wednesday. To be honest I have cried so many tears it's now more of a rock pool. The whole thing feels so surreal, it is very difficult to comprehend, it hits you like a sledge hammer every morning.

I want to thank you for all your lovely comments, I am overwhelmed. You are such a wonderful group of people, I consider you all to be amongst my closest friends, which I value so much.

I thought it best not to post because I find it very difficult unloading my problems, also I wouldn't want to unnerve others who are fighting this god awful disease, constant negative posts would not be supportive. If my news miraculously becomes more positive I will post but I will have to see how I feel. Should things progress quickly for the worst my husband will let you know. In the meantime health willing I will continue reading your posts when I can.

Thank you all from the bottom of my heart, love you:)

 

Djinnie x

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

for using some of your precious time to respond.  My mind is racing with things to say but nothing seems satisfactory.  I guess the important thing is  that you do know how very much we care.  Your family, though unknown to me, are in my thoughts too.  

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Again, my dear, so YOU to worry about how WE feel!

To reach out to US, means so much.

 

My HOPE is that you can truly sense and FEEL our care

our love, our concern.

We too are grieving: Shock, denial, depression, bargaining, acceptance

and not in THAT order! Grieving is not done in an orderly fashion either.

And its okay to be stuck in any of these stages.

 

So your post today, my dear woman,  

lifted MY spirits and that of so many others who have

grown so close to you.

You, my dear DJinnie, are simply SWEETNESS and LOVE!

Please tell your husband and family we FEEL for them as well.

They are NOT forgotten in this struggle.. hardly~

Feel our concern, our love, as the CNS POSSE is advocating and fighting

along side YOU!! Let US hold YOU up now!! Conserve your precious energy

Again, thank you so much for taking the time to come back here,

every moment with you counts as a BLESSING!

 

Gentle Hugs and continued prayers,

Jan

Bellweather
Posts: 100
Joined: Jun 2013

I hated to read this news and was lost for words.  I am praying for you, you have been a constant positive influence on this sight, I can speak for all of us when I say we love you!!!

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Just thought I'd let you know youre in our thoughts. Dont worry about being negative. If there is something you want to say we're here to listen

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Djinnie,

 

I am so troubled by what you have written and feel so very badly and sorry for you, but I feel worse for the others on this site that have been uplifted so many times by your positive story and the way you have supported so many with answers and hope!  May God bless you and strengthen you daily, regardless of what your body is fighting, carry the hope that all things are possible.  Somewhere tonight a star will burning bright!  Make sure you live life in it's life or vapor trail!  I very much thank you for the supportive notes and answers you have given me over the past year plus.

 

Take care and again God Bless You!

 

Tom

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

 

Djinnie, I am so sorry and saddened to read this latest turn of events.  All I can say is that we are all hoping and praying for you. - BDS  

 

APny's picture
APny
Posts: 1948
Joined: Mar 2014

Jan said it so well. This is all about you; not us. After giving so much to this board in advice, humor, compassion, and genuine caring, it’s your turn and you get to decide how you want to proceed from her on. We’re all praying for you and have your in our thoughts and keeping fingers, toes, and everything else possible crossed that the Afinitor will kick in fast. It was lovely seeing you on the board but yes, conserve your strength and energy. You’re a very lovely and special woman. It would be a privilege to know you in person. xxoo

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Love to you and your beautiful family. Your words and strength here have helped us all so much. Peace. 

mrs_blkjak's picture
mrs_blkjak
Posts: 103
Joined: Apr 2013

I am so incredibly sorry to hear this news. I agree with Jan. I remember well with Mr Blkjak that we continued to fight and live but stay realistic at the same time. It is such a tough balance. it is so hard to have people wanting you to stay hopeful when you're trying to process a very grim prognosis. I do hope and pray for a miracle for you but also wanted to offer you comfort and prayers as you continue to walk this journey. I wish there were words that could make this better. 

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

So shocked and saddened by your news. I will keep you in my heart and prayers for peace and strength for whatever lies ahead. I pray that God will use meds and his healing touch to slow down and stop the growth, giving you time for meds to do their job. I pray that He gives you peace and comfort during this time. Take each and every moment and relish it, honor it, and love every second of it. Find the beauty in each day, stay positive and find the joy in each minute. It's what each of us should do each and every day, live life to it's fullest until our last breath. May God grant you many, many more days, weeks, months and years of a joyous life. Stay positive - much love to you! - Rae

FLOSSER
Posts: 17
Joined: Jul 2012

Sory to hear your news. I have long followed you, Fox & several others since my husband passed. I am praying for you - strength , comfort  & courage. I hope you feel all the love & prayers coming your way. God be with you & your family on this journey. As always, SUZ

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

I am so sorry.  You are in my thoughts and prayers.

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

Djinnie If you should come back on here, I just seen this and it breaks my heart!!!  You are such a  loving person always encouraging others. I am praying for you my dear friend.

Darron's picture
Darron
Posts: 303
Joined: Jun 2013

I don't check in as often as I once did, but I am heartbroken to read your post. You are a fighter and you have always inspired and supported like no other. I send my love and prayers for you!

a_oaklee
Posts: 440
Joined: Nov 2013

My thoughts and prayers are with you Djinnie.  I think of you all the time and have been at a loss for words.  I'm really hoping that the Affinitor will work quickly for you.  I hope that you have some lovely spring weather to enjoy.  Love, Annie

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

Djinnie,

So very sad to read of your recent turn of events. While I'm  basically speechless, I do want you to know you’re in my thoughts, heart,  and prayers. . .

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