Any long time forum members here have estimates--see below...

n50j361

...on how many members here have survived 3 or more years after early stage IV diagnosis?

MomhasStage4EC

I dont know about 3 years,
I dont know about 3 years, but I have seen a few members on here who went from stage IV to stage III and have been doing well for atleast a year.

Daisylin

MomhasStage4EC said:

I dont know about 3 years,
I dont know about 3 years, but I have seen a few members on here who went from stage IV to stage III and have been doing well for atleast a year.

survivors.....
Well, I've been here for almost a year, and unfortunately, I can only think of 3 off the top of my head that have survived over 2 years at a stage iv.
One of them posts regularly here, even though her husband passed away a year ago (Sherri),
one who does not post often, but I know that her husband is still fighting (Mary)
and one who we have not heard from in a while, so not sure how she's doing (Callaloo)
There may be some others that I've overlooked, and hopefully someone can add to my list...

Chantal

lilrusty

Daisylin said:

survivors.....
Well, I've been here for almost a year, and unfortunately, I can only think of 3 off the top of my head that have survived over 2 years at a stage iv.
One of them posts regularly here, even though her husband passed away a year ago (Sherri),
one who does not post often, but I know that her husband is still fighting (Mary)
and one who we have not heard from in a while, so not sure how she's doing (Callaloo)
There may be some others that I've overlooked, and hopefully someone can add to my list...

Chantal

Chantal
I've only been on since September 2011 so I dont know much about survivors. I just wanted to say Chantal your picture is one of beauty and love. You have given so much of yourself even with all the pain and greive you are dealing with. You are a true inspiration to me as a caregiver.
Hugs & Love
Chrissy

oriontj

Daisylin said:

survivors.....
Well, I've been here for almost a year, and unfortunately, I can only think of 3 off the top of my head that have survived over 2 years at a stage iv.
One of them posts regularly here, even though her husband passed away a year ago (Sherri),
one who does not post often, but I know that her husband is still fighting (Mary)
and one who we have not heard from in a while, so not sure how she's doing (Callaloo)
There may be some others that I've overlooked, and hopefully someone can add to my list...

Chantal

My husband
Diagnosed stage 4 give or take depending on the scale used on July 20th 2009. He's still here. It went away a for a year..then came back and he and the cancer are a stand still for now. So it would be three years for him in July.

jan

unclaw2002

First let me say don't
First let me say don't concentrate on statistics because each of us is an individual and there are so many factors that will influence how someone responds to treatment.


But that being said, my dad was diagnosed in December of 2009 Stage 3, N2,MO - after completing chemo and radiation his scan in June of 2010 showed the cancer spread to his liver and became a Stage IV - one of the doctors gave him a few months. He lived to enjoy another birthday, a wonderful Christmas with all the family and his 55th wedding anniversary until he passed away in June of 2011. For the most part he did pretty well, yes there were a few bumps and the last month and a half was very difficult. But as Sherri so often says we did alot of living during those 12 months after the cancer spread and do cherish the time we were fortunate to have.

Best,
Cindy

mruble

26 months so far
As Chantal mentioned in her post, my husband is 2+ years from his stage 4 diagnosis in October 2009. Lots of chemo and radation, as well as THE since that time. Our Christmas present last Christmas Eve was learning that the cancer had returned and statistically speaking, it was not likely that Chad would see another Christmas. Needless to say, we'll be celebrating big next weekend -- the third Christmas that we weren't sure we would see together. We've done a lot of living in the past 26 months -- way more than we would have done without a cancer diagnosis. Live and enjoy each day.

Mary

Unknown

This comment has been removed by the Moderator

NGC1514

11+ year Stage 4 survivor
We have one Stage 4 survivor in the local Atlanta EC Support Group. He was DX in the summer of 2000 with multiple spots in his lungs. These were treated with chemo; a couple of years later he had a recurrence in the vertebrae in his neck. This was treated with radiation. About 3 years ago he had a new primary in the lung which was removed during the course of a biopsy and lobectomy.

The longest Stage 4 survivor I know is a lady who was diagnosed more than 34 years ago. She was given radiation at Shands in Florida and continues to do well.

Kenem

mruble said:

26 months so far
As Chantal mentioned in her post, my husband is 2+ years from his stage 4 diagnosis in October 2009. Lots of chemo and radation, as well as THE since that time. Our Christmas present last Christmas Eve was learning that the cancer had returned and statistically speaking, it was not likely that Chad would see another Christmas. Needless to say, we'll be celebrating big next weekend -- the third Christmas that we weren't sure we would see together. We've done a lot of living in the past 26 months -- way more than we would have done without a cancer diagnosis. Live and enjoy each day.

Mary

25+ months so far
DX Nov. 2009. Mets to the liver. Chemo only - no surgery or radiation. Current chemo cocktail is Erbitux and Irinotecan.

Latest CT scan says cancer is STABLE. No spread to other organs and no EC growth.

NGC1514

To William Marshall
William wrote:

I signed on here in May of 2003. There has been only ONE (1) Stage IV survivor that made it to the 3-year mark in my memory. The name was Cherseg. Her husband fared well for the first 2 years to 2 and 1/2 years with continual and frequent follow ups and treatments. However, the last 6 months were devastating.

There was one person that posted ONLY ONCE named "Katanna." She stated that she was a EC Stage IV survivor and was celebrating her 5-yr. anniversary. We had never heard from her "before or SINCE." Often people will pick up on that discussion thread, and address her. I recognize the name so readily that I always have to say, "Sorry but Katanna isn't posting here, and we have no knowledge of her whereabouts." I would assume that any Stage IV survivor would want to stay here to encourage others.
===========================================================================
While I can appreciate what you are doing here to help others, I think you need to keep a couple factors in mind.

1. The number of people who sign into this forum are only a tiny percentage of those diagnosed with esophageal cancer. As the National Cancer Institute says, something like 17,000 people will be diagnosed with EC this year. Even the ACOR EC forum (now with about 2000 members) represents a small percentage of that number. The last count I saw from the "greeter" on ACOR EC was about 8,000 people have signed on since the forum opened.

2. You are also dealing with selection bias in that the people who sign on here and over on ACOR are actively looking to communicate electronically about their disease. Is that significant? I don't know. Unfortunately, neither do you. That's one of the reason why selection bias can so distort analysis.

3. Off-the-cuff answers relying mainly on memory do not made up the basis for any sort of useful statistical analysis.

The fact is the American Cancer Society shows a 3% 5-year survival rate for distant spread of esophageal cancer and an 18% survival rate for regional spread which can mean a staging of 4A depending on affected nodes.

While 3% is certainly nothing to cheer, it is contrary to your "There has been only ONE (1) Stage IV survivor that made it to the 3-year mark in my memory."

I think this is an example of selection bias at work.

Eric in Atlanta
11 year survivor

borckman

Kenem said:

25+ months so far
DX Nov. 2009. Mets to the liver. Chemo only - no surgery or radiation. Current chemo cocktail is Erbitux and Irinotecan.

Latest CT scan says cancer is STABLE. No spread to other organs and no EC growth.

Congrats
Arevyoubusing any alternative treatments and is your chemo related to being tested for herebpositive tumor

cher76

unknown said:

This comment has been removed by the Moderator

Stage IV
I have a question about the staging. When Rickie was staged, we were told it was simply stage IV. No a or b. I realize that with metastiese to the bones that is considered spread to a major organ. Since that time it has spread to the brain as well. From what I have read in the new guidelines I got the feeling that they were doing away with the stage IV a and IVb labels. Or am I misreading this?
Cheryl
Wife of Rickie, dx stage IV EC, Oct. 2010
Mets to bones and brains

Kenem

borckman said:

Congrats
Arevyoubusing any alternative treatments and is your chemo related to being tested for herebpositive tumor

Alternative Treatment
Acupuncture every three (3) weeks to help manage the side effects. Not covered by insurance. Acupuncture allows me to keep up with the chemotherapy treatments.

sangora

NGC1514 said:

To William Marshall
William wrote:

I signed on here in May of 2003. There has been only ONE (1) Stage IV survivor that made it to the 3-year mark in my memory. The name was Cherseg. Her husband fared well for the first 2 years to 2 and 1/2 years with continual and frequent follow ups and treatments. However, the last 6 months were devastating.

There was one person that posted ONLY ONCE named "Katanna." She stated that she was a EC Stage IV survivor and was celebrating her 5-yr. anniversary. We had never heard from her "before or SINCE." Often people will pick up on that discussion thread, and address her. I recognize the name so readily that I always have to say, "Sorry but Katanna isn't posting here, and we have no knowledge of her whereabouts." I would assume that any Stage IV survivor would want to stay here to encourage others.
===========================================================================
While I can appreciate what you are doing here to help others, I think you need to keep a couple factors in mind.

1. The number of people who sign into this forum are only a tiny percentage of those diagnosed with esophageal cancer. As the National Cancer Institute says, something like 17,000 people will be diagnosed with EC this year. Even the ACOR EC forum (now with about 2000 members) represents a small percentage of that number. The last count I saw from the "greeter" on ACOR EC was about 8,000 people have signed on since the forum opened.

2. You are also dealing with selection bias in that the people who sign on here and over on ACOR are actively looking to communicate electronically about their disease. Is that significant? I don't know. Unfortunately, neither do you. That's one of the reason why selection bias can so distort analysis.

3. Off-the-cuff answers relying mainly on memory do not made up the basis for any sort of useful statistical analysis.

The fact is the American Cancer Society shows a 3% 5-year survival rate for distant spread of esophageal cancer and an 18% survival rate for regional spread which can mean a staging of 4A depending on affected nodes.

While 3% is certainly nothing to cheer, it is contrary to your "There has been only ONE (1) Stage IV survivor that made it to the 3-year mark in my memory."

I think this is an example of selection bias at work.

Eric in Atlanta
11 year survivor

20 months and stable
I have just moved past the 20 month mark and at this moment am stable. No additional spread since Dx and still treating. Though only god knows the answer, I am optomistic to make the 3 year mark as things are holding steading and have been for the past 20 months. If not, I have been blessed, seen some things I would have not seen and said some things to family and friends that needed saying but probably would not have been said under normal circumstances. Sam

cherseg

NGC1514 said:

To William Marshall
William wrote:

I signed on here in May of 2003. There has been only ONE (1) Stage IV survivor that made it to the 3-year mark in my memory. The name was Cherseg. Her husband fared well for the first 2 years to 2 and 1/2 years with continual and frequent follow ups and treatments. However, the last 6 months were devastating.

There was one person that posted ONLY ONCE named "Katanna." She stated that she was a EC Stage IV survivor and was celebrating her 5-yr. anniversary. We had never heard from her "before or SINCE." Often people will pick up on that discussion thread, and address her. I recognize the name so readily that I always have to say, "Sorry but Katanna isn't posting here, and we have no knowledge of her whereabouts." I would assume that any Stage IV survivor would want to stay here to encourage others.
===========================================================================
While I can appreciate what you are doing here to help others, I think you need to keep a couple factors in mind.

1. The number of people who sign into this forum are only a tiny percentage of those diagnosed with esophageal cancer. As the National Cancer Institute says, something like 17,000 people will be diagnosed with EC this year. Even the ACOR EC forum (now with about 2000 members) represents a small percentage of that number. The last count I saw from the "greeter" on ACOR EC was about 8,000 people have signed on since the forum opened.

2. You are also dealing with selection bias in that the people who sign on here and over on ACOR are actively looking to communicate electronically about their disease. Is that significant? I don't know. Unfortunately, neither do you. That's one of the reason why selection bias can so distort analysis.

3. Off-the-cuff answers relying mainly on memory do not made up the basis for any sort of useful statistical analysis.

The fact is the American Cancer Society shows a 3% 5-year survival rate for distant spread of esophageal cancer and an 18% survival rate for regional spread which can mean a staging of 4A depending on affected nodes.

While 3% is certainly nothing to cheer, it is contrary to your "There has been only ONE (1) Stage IV survivor that made it to the 3-year mark in my memory."

I think this is an example of selection bias at work.

Eric in Atlanta
11 year survivor

ERIC, PLEASE READ THE ORIGINAL POSTED QUESTION AGAIN!!
THE QUESTION POSTED WAS:

"Any long time forum members here have estimates on how many members here have survived 3 or more years after early stage IV diagnosis?"

LONG TIME FORUM MEMBERS WAS THE QUESTION.......

We all know the statistics, anyone can do research online.

Bill ANSWERED the specific question, about forum members, and he answered it correctly!!!!! I am cherseg, and my husband was diagnosed in 2007 and lived 3 1/2 years, JUST as Bill stated. I might add, that without Bill's support and concern, my journey would have been a very lonely and desperate one.

Bill didn't give general cold or "selective" statistics, which anyone can glean from the internet. He gave personal histories, provided by the people who have gathered here on this board. This medium has become very much like a second family for all who post here, all urgently in need of a source of knowledge, and a place to find hope.

Shame ON YOU for blasting Bill!! Yes, I said blasting, because THAT is how your message came across to me, personally. This observation is purely subjective, so your writing back to me, with a contradiction would be a wasted effort. Be assured that I am not the only member of this group that was offended by your insensitive comments. Perhaps your remarks were well intentioned, however on the written page, they appear to be arrogant. Again, subjectively speaking.

Are you aware that this EC board was removed once by CSN, because of "lack of interest", and if weren't for Bill, this EC group wouldn't even exist today?? Since Bill worked diligently to have it reinstated, there have been over 23,854 posters, desperate for help and information. Bill has unselfishly dedicated his life (as a cancer patient, you can appreciate the value of personal time),to answering each and every question or urgent cry for help. He could just go away, live his life, and forget all the friends here, but his sincere concern, dedication and desire to help everyone to be informed, is to the benefit of everyone on this board. This is a family, we have all been touched, horrified, and devistated by EC.

Although I don't post here very often, I keep up with all my "friends" by checking in on the boards every once in awhile. Today, your entry moved me to give a response.


You seem to be a person who relies on accurate facts, perhaps you should get your own facts correct, before reprimanding another poster who has only good intentions in their heart. Yours clearly weren't!

NGC1514

Sorry to have offended...
It won't happen again.

My best to you all.

Eric in Atlanta
11 year EC survivor

llamp0922

4 1/2 years 3B (or 3C) inoperable and still going strong!
Hi n50j361,

Welcome and sorry that you need to be here!

I am still going strong 4 1/2 years after diagnosis. I was treated with IMRT radiation and chemotherapy after my very large squamous cell upper esophageal tumor was found to have invaded and blocked half of my trachea. I couldn't be staged via an EUS since the tumor obstructed my esophagus. Various scans showed some local node involvement.

It was a rough road, but I always believed that I was going to be among the survivors. My doctors have recently remarked that my attitude played a part in my survival.

Peace, Love and Positive Thoughts!
Lisa

jgwright

llamp0922 said:

4 1/2 years 3B (or 3C) inoperable and still going strong!
Hi n50j361,

Welcome and sorry that you need to be here!

I am still going strong 4 1/2 years after diagnosis. I was treated with IMRT radiation and chemotherapy after my very large squamous cell upper esophageal tumor was found to have invaded and blocked half of my trachea. I couldn't be staged via an EUS since the tumor obstructed my esophagus. Various scans showed some local node involvement.

It was a rough road, but I always believed that I was going to be among the survivors. My doctors have recently remarked that my attitude played a part in my survival.

Peace, Love and Positive Thoughts!
Lisa

Attitude is EVERYTHING
Even for those in Stage IV, a positive attitude seems to extend life, and make it worth living. And wow, a positive attitude on the part of the cancer patient will make the lives of all around him/her so much better as well.

At least, that's what I've seen!

--Jerry