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Delaney
02-11-2011, 10:30 AM
CT scan results today - major progression. At least 3 brain mets - have been on Tyverb since 2009- guess that doesnt always work!
Also progression in bone and skin mets and lymph nodes.
I asked about Cyberknife or Gammaknife and was met with a blank look. Guess we do not have that in Ireland.
Starting brain radiation next week, hope they sedate me as those cages belong in a horror movie.
Also starting Gemzar, got Zometa today.
Doctor told me to keep the faith as he has seen people live 'a couple of years' with such a diagnosis. Feel like I am now the walking dead. Need to rant here as am trying to keep my sanity.

ElaineM
02-11-2011, 10:39 AM
I am sorry to hear your news. However please do not give up !!!!!!!!!!! There have been many people here who were given a poor prognosis and are still here many years later. Doctors do not know everything !!!!!!
Alot depends on how strong we are mentally and emotionally as well as what we do everyday to help ourselves. Medical treatments are only part of the solution. We have to participate by doing all we can to help ourselves.
A doctor told me I had 6 months to live in January 2000.
I decided that was not going to happen to me. Needless to say I am still here putting one foot in front of the other. My doctor called me last night to tell me that my recent Pet/Ct scan results were good.
Keep putting one foot in front of the other and keep going no matter what happens. Take good care of yourself. Happy Valentine's Day.

Ellie F
02-11-2011, 11:00 AM
I too am sorry to hear your news. Please remember the saying 'accept the diagnosis but NOT the prognosis' I always remind myself on down days that if one person can survive this disease then the possibility is there for everyone.

Hugs Ellie

michka
02-11-2011, 11:15 AM
Delaney, this is terrible news but keep fighting. There is a Cyberknife center in Lille, North of France. Ask your doctor about it. People come from Belgium, UK so why not Ireland. I also had this "few months" diag. I was so down but now I am just trying to fight for what I want. I send you hugs. Michka

Lien
02-11-2011, 12:20 PM
Delaney, those doctors have no way of knowing who will live and who will not. Ofcourse you are scared and upset right now. Who wouldn't be in your situation. But there's no reason to despair.

I have known women with great looking prognosis who died, I know at least three women who had a very, very dire prognosis who are alive over a decade after hearing that messag. It's not always attitude either. We just don't know what it is that keeps us alive. In the 7 years since I was diagnosed I've seen women survive after all chemo's failed, and they survived for a long long time. Some of them are still alive.

So just take it one treatment at the time. If you can, follow Michka's advice and check out treatment centres on the Continent. I believe there's new European legislation allowing you to have treatment anywhere in Europe.

Go have a second opinion. There are usually more things you can do. This doc of yours could well be devastated himself and perhaps he has trouble being the bearer of bad news.

Hang in there, girl. As they say, it ain't over till the fat lady sings

Hugs

Jacqueline

Delaney
02-11-2011, 01:46 PM
Thank you all for your help. I will definitely check if I can travel to get cyberknife. And Elaine - you are here 11 years after a poor diagnosis!!! Wow. My doctor was so lovely today, I always go in on my own and the nurses gave him a hard time because he broke the news to me on my own. But I had asked him and I'm glad he was so honest with me and if he had said wait until your husband comes in, well then I would have really freaked out. I'm not telling my children yet, no sense in us all being miserable, I will see how it goes.

krisvell
02-11-2011, 02:16 PM
Delaney;
I am kind of sitting in the same spot as you are. The Radiation Oncologist told me I have a lot of years but when I asked him what a lot meant; he was vague 2-4. I am trying hard to get to place where I have accepted the dx and am getting myself up to start fighting the beast with the Gamma Knife, low stress, Vegan (have been drinking the Green Drink over 1yr) and will start to exercise again real soon. Folks like Elaine,Kim C., StephnN, Chrisy, Joan, Brenda, Barbara H and others I forgot give me hope. We are following their footsteps. Please try to hang in there like I am trying to do.
Sending Hugs and Prayers your way,
Kris.....

Ceesun
02-11-2011, 02:40 PM
Yes, and do not forget our founder Christine's amazing journey with this disease. Best Wishes. Ceesun

Barbara H.
02-11-2011, 02:43 PM
In May of 2004 when I was diagnosed stage 4 the radiologists told me they had never seen anyone live beyond five years. I had a 3 cm tumor removed from the the prefrontal cortex followed by stereotactic radiation. When I told my oncologist what they had said, he told me not to listen to them. Well, I still work full time and am currently NED. It is impossible to predict the future. You need to find the best treatment plan, and take each day as it comes. Delaney, you should really try to get targeted radiation if you can. My thoughts are with you. There are new treatments coming out as well as some that you have not tried. I know it's hard when we receive this news, but try to keep your fighting spirt.
Best wishes,
Barbara H.

bejuce
02-11-2011, 02:53 PM
I'm sorry to hear this, Delaney. But as Barbara and others above have said, there's still much hope out there. Keep fighting and believing. We're all here cheering for you.

Many hugs,

Marcia

kiwigirl
02-11-2011, 04:39 PM
Hi i to am going down the same path. As you and it looks like i will be starting VMAT instead of wbr. Also the onc's are still talking T-DM1 (Marianne trial).

I always tell these onc any doc i am not a statistic i am me. Lets fight together!!!!!

Thinking of you from the otherside of the world.

tricia keegan
02-11-2011, 05:26 PM
Helen I was very sad to read your post and feel sure cyber/gamma knife is available here!

Try e mailing St Lukes http://www.slh.ie/departments/radiotherapy.php

If not, I think the HSE will cover the cost to another facility in the UK but not too sure as haven't checked fully.

You're not the walking dead and can beat this as other's have, this regime just was'nt sucessful for you but there are other's ton choose from. I know the part of the country you're in and if you feel you're not getting the best care try switching to somewhere in Dublin. I attend Tallaght and have been very happy with my care there.

My best wishes to you and mail me if you want to chat ((((hugs))))

KDR
02-11-2011, 05:42 PM
Delaney, I am sorry you have to handle news of progression and have your life interrupted again. I like to refer back to what my oncologist said when we first met. "You just gave me the worst diagnosis of my life," I said, as I put my head on her desk. "Am I going to die?" She said, "Don't bury yourself yet!" with a great big smile. "O.K., It's an aggressive disease, but we have aggressive drugs to treat it!" When I'm down, I think of her face-her belief, and remember that our hospital has the experience of treating tens of thousands of patients before me, and she's probably right.
So, would you delete what your doctor said and insert what my doctor said? Keep thinking positive...I,m 1/4 Irish and I have to tell you, we come from strong stock! At 83, my grandfather had skin cancer, had a stroke, got hit by a car in the crosswalk going to church, had a heart attacked, and survived You can do it!
You know, a memory just came 'round: the mother of my 7-year-old's classmate (radiologist doctor, specialty breast) got word of my diagnosis and struck up a conversation with me, at a Party City store, no less...she said, "So, what's your prognosis?" to which I replied, "What's yours?"

Hugs,

Trish
02-11-2011, 06:14 PM
Oh Delaney (or is it Helen?) so sorry to hear the news. But we are right here with you in our cyberspace way. Sometimes it's good to be able to process these things on our own and the doctor seemed to be responding to what you needed at the time- you strike me as someone who likes things ungilded. My prognosis has officially been less than a year for a couple of years now. My doctor did say feel free to live longer and I have been taking her advice for a while now and intend to take it for a good while longer. Nobody knows what's in store for us and most doctors don't pretend to. They just try to give us the best information they can. There is plenty of mystery left in cancerland hence plenty of scope to hope.
And I'm hoping very hard for you.
Trish

Delaney
02-12-2011, 09:03 AM
I have to thank you all again for your lovely replies and I will keep you all updated. I have decided to take one day at a time (is it too late to become an alcoholic?). I might take up smoking and bungee jumping. At least three people on Friday told me I might get hit by a bus. Sure, theres always hope!

Mary L
02-12-2011, 11:15 AM
Delaney, I am so sorry that you received bad news. It breaks my heart to hear how sad you are. There are so many new cancer drugs now and in trials. Please keep the faith and don't give up. You are a fighter!!!! There are so many women on this site that have beat the odds and are living happy lives. You will be one of them. I will pray for you and I am sending you a BIG HUG!!!!!! Mary L

Sheila
02-12-2011, 12:59 PM
Delaney
DO NOT throw in the towel!! Wish I had a nickel for all the grim bad news reports I have been given , Actually, when I went to visit my surgeon last year, he said he was surprised I had lived so many years after recurring so quickly. My reply to him was, I'm not, I am not done fighting and certainly not ready to give up....after continuous treatment for over 8 years, I figure I've yet to find a treatment that was worse than the disease....
Our mortality is only known by our creator....
Carpe Diem, and add a few prayers.