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Hello...I'm dying


SixtoTwelve

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Hello!

I'm new to this site. I am a 33 year old female who was diagnosed with Stage IV stomach cancer on Halloween day last year. I was given a six to twelve month life expectancy.

I have been having extensive...horrible...chemo for over nine months now only to get scan results back that the cancer still doubled...now I'm on weekly chemo in a last ditch effort to...well I guess prolong the agony.

I know it us all in Gods hands and I could get a miracle but....

I don't know....just came looking for something...even in my cancer group I'm the only diagnoses terminal one...it's like I don't have a place....people who understand.....

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Dear SixtoTwelve,

I am so sorry for so much. Sorry you are living this nightmare and have been through so much. Before I go further, I am so sorry you had to see these horrible spam like responses to your very real and serious need for help. I was not the cancer patient, my son was, but I know a bit about feeling isolated in all this. I was the only mom with a son going through it as we were and his cancer was 1 in a million never seen before from the get go so we know of the unique club, not fitting in, not having a place. I'm so glad you chose to reach out for support here and I hope I can offer some words of comfort.

 

You are so very very young to have to get cancer. Your profile says you are in TX. Are you being treated at MD Anderson by any chance? If not, have they see you for a consult/second opinion?  I became a cancer expert. So much so that the country's top cancer doctors would ask if I was a doctor or nurse because of how up to speed I was in our convos from the moment we would meet. I had to be. And I could - meaning I had the ability to do it. So now I help people struggling to find a cure when I can.

 

Based on what you say re: your cancer I have to ask if anyone has spoken with you re: getting yourself into one of the anti-PD1 or anti-PDL-1 trials? This is the latest greatest set of drugs that have come out to fight cancer. They are revolutionary and everyone wants it because they have had tremendous success with many types of cancer with the same drug. It's been written about over the past 18 months so much because of how many people have been cured or responded so well. The trials are all over and certainly at MD Anderson. There are 4 major pharmaceutical companies doing various trials with this class of drugs in combination with other drugs, each working diligently to see if one combo works better than another for a larger set of patients and variety of cancers.  I can tell you more about how to get yourself into one of these trials if you have not explored them at all. But if you are interested you should look them up on clinical trials.gov so that you get somewhat up to speed on what they are, criteria for inclusion, excluding criteria, etc.  There are also trials going on for NK cells and T cell transplants.  All of these trials are designed to boost your own bodies immune system cells to fight the cancer vs. the old way of blasting the chemo w/ poison to kill the cancer w/the drugs. The nice thing about the anti-PD drugs is that they don't go in and kill good cells and bad cells (not cytotoxic like reg chemo) . The transplants do require reg chemo so they can harvest cells and then reintroduce them.

 

So enough for now of the medical side of things. Outside of the cancer group, do you have other support avenues? Do you have a personal therapist you can talk with? Are you familiar with the Cancer Hotline and Cancer Lifeline numbers? There are people trained to counsel over the phone for a cancer patient or caregiver. It can be very comforting and a contradiction to the isolation to have a live person on the phone to hear you cry, to offer a soothing voice and words of validation. Anticipatory grief is like no other. My son was terminal but would not reach out for help to anyone other than his therapist. But not regularly enough. So one layer of a million of the heartaches for me now is knowing how he must have been internally tormented and freaked out. And alone feeling.  Another avenue for you to get support is via your hospital's on staff counselors and hospice. Im well aware that you can't become a hospice patient and receive their support as long as you are on chemo or other things to prolong life. But they have chaplains who might speak with you knowing you are in this situation. And LIVESTRONG is an amazing place for help (regardless of what Lance did and how people feel about him, the charity does phenominal things to help cancer patients). Being in TX I would think many of their staff would have their finger on the pulse of the various avenues for support for you. And then there are the sites like Stupid Cancer and Stand Up 2 Cancer. They are amazing with their online forums and chats and ability to connect patients. You would find way more people there in your situation than you would think, all supporting one another.

 

I hope you are blessed with a miracle. For now, in this moment which is all we ever have anyway, I hope this brings you some comfort and you have moments of peace today.

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Jesse David & Taylor Mom

Six to Twelve...

 

I noticed your thread tonight...I offer quiet prayers on your behalf.....

 

You might want to look at Dr. Lani Leary web site...at http://drlanileary.com/

She works with chronically ill, dying, and bereaved clients....

 

Do you have a support system of some kind?

 

Excellent response msmom...

 

(I have reported the spam on your thread to the adminstrator of this site...sorry about them...)

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Hi.

I sympathize with you. I'm still hopeful for you. I would suggest you with a non invasive zero side effect remedy.

Change your eating habits and heal yourself.

Starting tomorrow please stop consuming cooked or processed food. Eat only Organic RAW Vegetarian food. If you follow this advice strictly you will be healed completely. God bless.

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Chano the Great

I too have been diagnosed as terminal. I have a rare convergence of several blood disorders, and have blood clots throughout my heart. I get them in my lungs and legs constantly. Also I have them throughout my superior vena cava which has occluded most of it and caused it to completely colapse at other points. It's about 87% occluded at the moment. It limits blood flow coming from my head to my heart to almost a stand still causing me severe excruciating headaches and enormous amounts of pressure in my head. I can't walk most of the time because it causes me to black out constantly and it even causes little mini strokes, but that's not extremely common. I also have to be on oxygen 24/7 because of all the scarring in my lungs from the constant clots. As of yet there is no cure for my condition at all. I was originally given 1-2 months at most to live but a group of doctors found a course of treatments to prolong my life. Like the treatments you undergo they are excruciating and extremely unpleasant. They are surgical procedures I have to have every 4 weeks and unfortunately all I can have is local anesthetic to numb the sites where they cut me open to insert the different tubes, but I can't have any general anesthesia or even conscious sedation of any kind because I had an adverse reaction the very first procedure. So now I endure a couple hours of very painful procedures for a 7-9 days in a row every 4 weeks. Like you, the people I've met with other serious health issues in support groups aren't terminal and don't truly understand having the feeling of your mortality looming over your head. I commend you for making the step to try out this site and this forum. It has been a big help for me and I've met some great people here who've been a great inspiration and been truly wonderful. Feel free to write me any time you'd like. I DO understand what you're going through and I am more than willing to talk any time at all.

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Jesse David & Taylor Mom

I too have been diagnosed as terminal. I have a rare convergence of several blood disorders, and have blood clots throughout my heart. I get them in my lungs and legs constantly. Also I have them throughout my superior vena cava which has occluded most of it and caused it to completely colapse at other points. It's about 87% occluded at the moment. It limits blood flow coming from my head to my heart to almost a stand still causing me severe excruciating headaches and enormous amounts of pressure in my head. I can't walk most of the time because it causes me to black out constantly and it even causes little mini strokes, but that's not extremely common. I also have to be on oxygen 24/7 because of all the scarring in my lungs from the constant clots. As of yet there is no cure for my condition at all. I was originally given 1-2 months at most to live but a group of doctors found a course of treatments to prolong my life. Like the treatments you undergo they are excruciating and extremely unpleasant. They are surgical procedures I have to have every 4 weeks and unfortunately all I can have is local anesthetic to numb the sites where they cut me open to insert the different tubes, but I can't have any general anesthesia or even conscious sedation of any kind because I had an adverse reaction the very first procedure. So now I endure a couple hours of very painful procedures for a 7-9 days in a row every 4 weeks. Like you, the people I've met with other serious health issues in support groups aren't terminal and don't truly understand having the feeling of your mortality looming over your head. I commend you for making the step to try out this site and this forum. It has been a big help for me and I've met some great people here who've been a great inspiration and been truly wonderful. Feel free to write me any time you'd like. I DO understand what you're going through and I am more than willing to talk any time at all.

Chano,

 

I am sorry for the loss of your health and for the diagnosis you are facing. Know someone has read your post and has said a prayer on your behalf. My own son passed away in 2012. Prayers.

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1020314_alwaysmyloves

I just lost my son to bone cancer he was also diagnosed to live a short time ... He was able to hang on for almost 3 years but the cancer refused to go away ... If you want to talk I mean honestly talk I would be willing to tell you things .. There's times that right now I wished we would of talked about before he passed away he was only 22.. ( my dad and grandma also had cancer)

We don't.. as family talk about them because we always have such high hopes that he would of been one of those ppl who were a cancer survivor.. But it didn't happen... There's things now that I wish I would of known even if the end result was still what has happened .. Him leaving.. I still would of wanted to be better prepared or know what happened for others so I could prepare for so many things .. Again I'm not trying to scare you .. I pray that you will be one of the fortunate ones who is a survivor that's my sincerest wish for those of you whose body has been affected by cancer. But if you ever want to know ..I'm here ..

My heart and prayers are with you ..

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I am so sorry for you. I will say a prayer that you find strength to deal with whatever comes. I am not religious but bless you.

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ordinarysoul
On 9/21/2014 at 9:07 PM, SixtoTwelve said:

Hello!

I'm new to this site. I am a 33 year old female who was diagnosed with Stage IV stomach cancer on Halloween day last year. I was given a six to twelve month life expectancy.

I have been having extensive...horrible...chemo for over nine months now only to get scan results back that the cancer still doubled...now I'm on weekly chemo in a last ditch effort to...well I guess prolong the agony.

I know it us all in Gods hands and I could get a miracle but....

I don't know....just came looking for something...even in my cancer group I'm the only diagnoses terminal one...it's like I don't have a place....people who understand.....

SixToTwelve,

This may sound strange -  but, I almost wish I could be you.  I've been having very disturbing yet undiagnosable symptoms for over the last three years.  I am unable to function with a normal life.  Now I am unable to have a bowel movement.  My urine is completely odorless.  Doctors sense something is very wrong, but cannot get a diagnosis through tests.  There is no way for me to let my family know - they just think that I'm nuts.  But I am not recovering.  I wish I could be in your situation - your doctors were able to tell what happened to your body.

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Hey, I care about you and I'm so sorry to hear you're going through all this.  My 44 year old male friend had advanced stomach cancer.  He went all the way through chemo and he recovered.  He looked like he felt rough during chemo, though. He's out dancing with our salsa dance group several nights per week again and it's been 3 years now since he recovered.  I have also heard that cancer patients can heal a lot more quickly if they follow an organic, wholegrains / whole fruits /whole vegetables superfoods diet with no sugar or fast food.  Taking high-quality turmeric w/ curcumin capsules has helped a lot of folks recover faster.  I personally take NAC ("ACC" in German) that I mail order from Germany.  It is now being used for many major illnesses where the body tissues are being broken down or changed.  I order mine online and I like it so much because it's not some yucky heavy chemical drug.  You get better soon, dear, and you are welcome to message me directly anytime you'd like.  

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