My sister's cancerstory

Relax with your friends in The Den.... :satan:
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Madrigal
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Re: My sister's cancerstory

Postby Madrigal » 20 May 2014, 02:10

YAAAAAYYYYY!!!!!!!!!!
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Re: My sister's cancerstory

Postby Thom » 24 Jun 2014, 15:35

sister is doing awesome, bar some tiredness.

extremely proud of her because she made some intense but important decisions for her time left to be HAPPY.

now it's onto the scanners on July 4th....
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Thom » 04 Jul 2014, 00:22

scans tomorrow, thumbs and energy up please.... :adam:
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Thom » 04 Jul 2014, 22:26

ALL STABLE!!!

again a little shrinkage, 2 tumors are now 11mm, LDH was even the lowest of all patients...
couldn't have had better news!
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Madrigal » 04 Jul 2014, 22:27

That's fantastic. I'm sooo happy for her and the rest of you!
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Re: My sister's cancerstory

Postby Thom » 08 Jul 2014, 12:33

Today it is one year my sister got her diagnosis of stage 4 melanoma. She had mets in the liver (2), pancreas, ovaries, stomach, glands an vessles. She was given less than 4 months. But she's a fighter! One year later, thanks to BRAF/MEK combo, she 'only' has one small one in the liver and one small on the ovaries. We are in full strength of mind and body and we WILL fight this head on! She is so amazing!
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Thom » 28 Aug 2014, 21:41

Tomorrow we are having scans again. Please thumbs and energy up....
Sister is doing great still, a little more tired though.... but still awesome.

Being in this "melanomaworld" is hard. very hard. you meet a lot of people, extrodinary awesome people and then sometimes they die.
I met a friend, Adrienne from Canada, 35 and she died yesterday... on the day she was having her first scans since new treatment... devastating...
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Thom » 29 Aug 2014, 19:09

All is still STABLE!
*HAPPY DANCE*
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Vitalina » 30 Aug 2014, 05:24

Great news, congrats! And have a great weekend :)
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Re: My sister's cancerstory

Postby Madrigal » 30 Aug 2014, 06:11

HURRAH! I'm so glad, Thom!
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Re: My sister's cancerstory

Postby Thom » 04 Nov 2014, 23:28

my sister's scans have been moved from 2 to 3 months so the next one is in 3 weeks.

she still is doing awesome, no sideeffects or nothing. she split with her partner and moved house, never been this happy she says.

hope we can move forward, stay like this untill anti-pd1 is approved...

thank you for all your questions and support. it means a lot...
...And They Have Escaped The Weight Of Darkness

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Re: My sister's cancerstory

Postby Madrigal » 05 Nov 2014, 00:14

That's fantastic news! I'm so glad she's doing so well!
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Re: My sister's cancerstory

Postby Thom » 05 Nov 2014, 18:40

when we started the data of this new therapy (BRAF + MEK inhibitor dabrafinib/trametinib) were an average of 10,5 months (my sister is in her 65 week).
new data shows an average of 17,5 months.
people who have a full response can get a response of 2 years or more
my sister has a PR (partial response) with a tumor reduction of 80 a 90%
she still can get a CR (complete response) with every scan we are VERY happy with a "STABLE"
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Thom » 27 Nov 2014, 19:25

We had scans on November 21th to reveal she still is stable!!!!
17 months!!!!
...And They Have Escaped The Weight Of Darkness

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Re: My sister's cancerstory

Postby Thom » 28 Dec 2014, 00:28

all my best and warm wishes to all who is following our story.
thank you for the all the messages this past time!

happy holidays and a HEALTHY 2015
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Madrigal » 28 Dec 2014, 01:46

Same to you, Thom. <3 Glad to hear your sister has a clean bill of health!
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Re: My sister's cancerstory

Postby Thom » 23 Jan 2015, 11:45

sister is having an extra scan of the brain in half an hour.
slight headaces...
...And They Have Escaped The Weight Of Darkness

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Re: My sister's cancerstory

Postby Madrigal » 23 Jan 2015, 19:17

Fingers crossed! <3
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Re: My sister's cancerstory

Postby Thom » 25 Jan 2015, 16:21

ALL CLEAR!!

phieuw!!! going into our 19th month of a predicted response of 10 months!

(my sister is in a national newspaper today)
"Sometimes I'm kidding. Then I say that there is something on my liver. "And there is something on the liver of Ann, twenty-nine years, single mom of son Nyo. Three tumors to be exact. Every five centimeters. They also have all kinds of metastases from melanoma, cancer of the skin. When she went to see the doctor in August 2013, he was talking about weeks. Or months. Ann: "Live from day to day. Do not make long-term planning and enjoy life, "said the oncologist."
Jan is fifty, married with two daughters. He was a gentleman in the high bank. Made trips abroad, was where the atmosphere was, organized comedy shows and stood in life. Suddenly to that life's throat constricted. Brain cancer. "Doctor, very open and honest while how long I have to live," he asked. "Of the people with such injuries after two years no longer alive and we still talk about the patients we operate," replied the doctor. "With you from surgery there can be no because the injuries are too deep. Do so only a whole lot from it. Four, to five months? "
Peter is an enthusiastic teacher Geography, his disciples see him and he them. He is married and has three daughters. He wanted to walk with his wife to walk to Compostela. Just before the trip, there appeared to be something on his stomach, a gray stain. It proved to be a neuroendocrine carsonoom. A rare, aggressive cancer with metastases growing between his organs. "I asked how long I had left. I thought between five and ten years. But it turned out to be about months. Eight months. That hinted the doctor. "
In all three there is talk of treatments. Not to save their lives, but to stretch it. The treatments are experimental. It is to be seen whether they catch on. And if they if they can catch on the growth of the tumors to slow down. Nothing more. But they had to prepare for the end.
"Of course you resist," says Ann. "You're in a daze. You do not realize what is being said. And then seeps through. You become rebellious. But above all, you suddenly want everything out of life. I immediately thought of the bucket list. The list of things you should do before you die. Bungee jumping. Or to make a world trip. But when I was at the garden table in the sun with my friends to make plans, I suddenly thought: this is it. Here, life revolves around this. Being with my friends and my son sitting at the garden table in the sun. I don't need to have that trip and leave that bungee jumping but for what it is. '
Jan also made quick click. "I knew where I stood. On my 49th was the start of my end, a few months of life with death at my side. All my energy I would spend on positive things. Things to do for the future of my beloved. "He went with his wife and children on a journey to Tunisia. "Everyone texted me" keep your pecker up, but we were there too darn delicious baking in the sun while it was Christmas. It was blissful days. "
Peter straightened after the first hammer blow also his back. He had to walk with his wife yet to Compostela. And they did it. "One time we had to return to stabbing a stent in the bile duct. But after ten days we left. It was not always easy, but it was a wonderful time with my wife. "
Meanwhile ticking time merciless and death lurks around the corner. But the days, weeks and months pass and they know it, they exceed the deadline. That does not go without a fight. Pieter can hardly eat, just some soup, snacks and morning a cheese sandwich. Jan sleeps most of the day and Ann feels good, so far.
Sometimes Peter and John rushed to hospital but like Ann they fight the biggest fight of their lives and win. Tentative.
Peter: "You do not realize it, that you exceed the so-called deadline. My two daughters were pregnant. I wish necessarily still experiencing the births. My deadline was sometime in late December 2013. However, the end of December I was lying on a gurney in the emergency room. I had excruciating pains and fever did. That pointed to an infection, which is very dangerous if you have cancer. They just had blood drawn when Mieke got phone. "It's not true," I heard my wife. She hit her hand to her mouth. I had become a grandfather Cas. The emergency. "He laughs. Mieke puts her hand on his hand. "I hit me through again and a few months later was born a grandson. Arne. Also, I could go through, against all odds. "
Pieter the renovation plans of their home early. "We have long wanted a kangaroo house. One of our daughters will live here and we move into the construction. That was only for later, but I did not want my wife who had to arrange renovations themselves yet. So we did everything early. In two weeks, we can be in and that reassures me. My wife not only will live in the big house. And I'll live to see it, which is also important. Even though it is not always easy to be sick to death if there beside you drilled.
Jan recognizes that. He took in his spare time that various practical issues were still regulated.
"We have built together for the future of my wife. The future in which I no longer will be. We went choose other doors come painter and signed with the landscaper let a new garden so she can enjoy it later. That went very fast. If the painter said he would come in a few months, we laugh that we had not months. "
Ann tries to ignore that deadline. "In the beginning I naturally told my son about the monsters in the womb. And about the doctors who will defeat the monsters. "As she tells it, Nyo is sitting on her lap, with his computer game in his hand. "Look mom, I have zero life." Ann smiles. "You can start over again boy."
Ann can not start over. "But the strange thing is that I feel so good. I had only a few weeks or months left to live and see, I'm still here. I would prefer a little longer life and I believe in it, but I really should make no illusions. The monsters in my stomach are now quiet but that probably does not remain so. In the beginning my family filmed everything. Every trip we made was recorded on film. As a reminder for later. Also many friends and acquaintances did that. For each monthly scan that I had undergone, I got a lot of text messages. "Success, we think of you." But as I live, you notice that fewer people texting. Who think I get through this month again. I understand that that is human. I also catch myself on that I sometimes forget that I'm going to die. I started to watch my weight again, work for a couple of hours even again and dare to wind me up in small things. Then I'll call in in a panic to my brother and say 'brother, I'm not living aware enough. "Then he says we're all not aware enough of life."
Jan: "In the beginning, catch up with friends you always fixed after a visit if it were the last time. Now they go all out to put me next time just to see again. And then she jokes: "John, if we can not see, the best across the street."
Peter: "In September I went to school for a few days. I felt good, so why not? I've enjoyed it, even though it was difficult. I told about the natural elements and landscape features. About how you should orient. In short, a simple geography lesson, but I liked it. Even though it was to swallow when the bell rang and I had to close the door behind me. "
Ann: "I have a memory box with goodies and letters that will see my son than later. A box of my favorite books, favorite movie, a dress from my first communion he might ever give to his daughter and letters. For if he is six, ten, twelve, the first time to the secondary, at sixteen, at eighteen. Then I write "Congratulations, you are now eighteen. Always with a wink, I do not want the heavy serious letters. I also found a student cookbook of tips on what to cook when you have a hangover. And this article that you write now, it also ends up in the box. "Ann is laughing out loud, pours some water. Nyo is sitting on her lap, he has a few little lives in again.
"Well, I'm still living, so that box is filling up," she says. "The longer I live, the more he might remembers me. Every day is an extra day with him. We do not do crazy things, but just live life every day. I take him to and from school and do not speak much about the monsters. I want to give him a normal life. I sometimes he asks for and say that they are still there, but mom is fighting against it. "
Jan: "In the beginning of my extra time, we have also become regular customers of the travel agency. Each time after a good scan, we went to speak the next day trip. Now I'm too weak to do that yet. But I'm thankful that I have the extra time the proclamation of my daughter was experiencing. And I could help prepare the journey with my daughter to Ghana. I know the country pretty well and now we have that common land forever in our hearts. "
Jan is now rapidly. He enjoys the little things. "It sounds cliché, but this is it." He points to his coffee. A plastic cup, because sometimes accidents happen because his coordination is not good. This cup of coffee with my wife, that makes me happy. Like a party game to play with my daughter. "His wife sighs. "On New Year's Eve we played the board game Hotel. Well, he still wants to win. Typical. The less chances of success he has, the more he wants to win. The harder he believes in it. When his illness is that true.
Jan has actually survived three deadlines. "In November, they said it would go really fast.
They saw in the picture what they normally always seen in the last stage. But when I was there in December, I called the doctor. "Doctor, I'm still here huh. I also have to adapt my funeral text. Certainly four times, otherwise he is no longer current, "he grins.
Quite striking. All three of them are happy. They radiate peace. Jan: "It sounds crazy, but the certainty of only four months to go until then had us a milestone, given a context that there is now no more. Of course we are incredibly grateful, but it still cost us a couple of months before we arrived in the sense of stability. False stability, because it can be done tomorrow. "
Peter: "I am happy with every bit of time that I have. I'm going to cook for my wife. This weekend I have rabbit made for the whole family. I was proud. "
Jan: "I'm doing less and less." His wife nods. "John has just an embarrassing moment behind. He got the lunch yourself inside. His coordination was failing. Our one daughter was there and cried. It was hard to see. "John shrugs. "Oh, I forgot about that. I do not mope. Look, you can mope until you drop dead, or you can still make something of "His wife says: '. Last night we still had a very nice night. His hospital is down here at the window. I lie there on a mattress next. Jan had to go pee and I woke up. "Look, what a beautiful starry sky that. I'm next to him sit on the bed and holding hands, we looked at the stars. "
What they still want? Jan: "The deadline has been repeatedly postponed, it's a rollercoaster, but why not a few more months? I would like to go to a comedy show in the spring. Even Though. This afternoon it can be done. Give me so but just a cup of coffee. "Peter then hopes to get back in April yet. "I have my godson promised that we put together a piece of Paris-Roubaix would ride. That is not easy, I can not agree with my bike up the ramp here, but 'Ann'. Still being alife in fifteen years, until my son is eighteen. Fourteen years is also good. "
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Thom » 25 Jan 2015, 18:02

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...And They Have Escaped The Weight Of Darkness

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Re: My sister's cancerstory

Postby Madrigal » 25 Jan 2015, 18:19

That's fantastic news. So glad to hear things are going well for her. :)
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Re: My sister's cancerstory

Postby Thom » 04 Feb 2015, 00:38

...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Toefje » 04 Feb 2015, 01:05

Where is Mama Dees appology
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Re: My sister's cancerstory

Postby Thom » 04 Feb 2015, 20:54

For those who can view it:
the interview in full
http://deredactie.be/cm/vrtnieuws/video ... =1.2228872
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk
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Re: My sister's cancerstory

Postby Thom » 05 Feb 2015, 12:08

http://www.gva.be/cnt/blkma_01512260/ik ... u-vergeten

Her recent interview to raise awareness for melanoma + get a nice memory for her son
Last edited by Thom on 15 Feb 2015, 21:41, edited 1 time in total.
...And They Have Escaped The Weight Of Darkness

http://youtu.be/oxRWqirflxk

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