Stage Iv Survival Stories?

There are many survivor stories on this board that are very encouraging! I have pasted one here that I just found today. Some others sites that I have found survivor stories are www.acor.org and www.eccafe.org. Hope this helps!  

Today marked a milestone, the end of the beginning, and a giant leap of faith that we can
put one more reminder of esophageal cancer behind us.  We spent the day at the brand new
inpatient interventional radiology facility at U. of Colorado so that Dick could have his
port removed.
The port was the first tangible sign that he was given the opportunity to fight his Stage
IVb EC diagnosis with metastases to lymph nodes, lungs and liver after being told by
another oncologist he had no chance of survival.  And today, after more than 38 months in
his chest, 19 months of not being used. and approximately 7-8 PET/CT scans that have shown
no clinical signs of recurrence, all of us, Dick and I, his physicians, his nurses, and
the rest of his support team, have concurred - the port could come out. No more safety
net, no more monthly flushing and no more lurking thoughts in the back of the mind that it
might be needed again!  For now we have freedom from the tangible reminder of months of
chemotherapy and ancillary treatments and freedom to  focus on the fact that the port had
become obselete for him..
As I waited outside for Dick to have the port removed,  delayed more than 3 1/2 hours
because of the massive number of patients in the interventional radiology treatment area,
I replayed the memories and feelings that I had more than 3 years ago, when it was
inserted the day before Dick began his first round of chemotherapy. We both were in a dark
and desperate place then, having spent almost 3 weeks to find a physician that would at
least consider treating Dick and giving him a chance.  It was a strange emotional turmoil
that I went through that day, with gratitude that,  at last,  the first step in treatment
was to begin, balanced against  the overwhelming weight of the knowledge that this step
was likely to be futile.
    The senior interventional radiology fellow removed Dick's port today, and he remembers
when Dick first was discussed among the oncology teams at Anschutz, Univ. of Colorado,
during his first year of training.    He said today that Dick's name keeps coming up when
they are discussing other cases and that Dick's responses are reviewed when others with
similar problems and degrees of malignancy are being treated.  And he told us the sad fact
that many patients now cannot have the SIRspheres that eliminated Dick's liver tumors, for
insurance companies are simply not paying for them.  Dick was in the initial clinical
trial and the cost of the spheres was covered by the clinical trial protocol, and his
insurance paid for all of the ancillary charges.  What a catch-22 when insurance companies
say there are not sufficient numbers of patients to prove the efficacy and will not
approve a new treatment,  and more patients cannot be given the treatments because of the
expense!
Tonight we are home again, watching the snow fall gently on the evergreens and rocks
around our mountain home, realizing that one more bridge has been crossed and that one
more day has been a gift.
The  last tangible reminder of those dark early days beginning chemotherapy is now a
memory.
The Dickermans, Lois and Dick (dx Nov. 2004 Stage IVb esophageal adenocarcinoma with mets
to lymph nodes, lungs and liver.  No discernible tumors by PET/CT since July, 2006.)

my thoughts r with you.. I hope things work out this ec cancer is a tough demon. Keep fighting and happy thoughts hug everyday. I lost my wife 3 weeks ago to this but that doesnt mean you cant fight this with you or whoever you are fighting this with my wife was 38 not fair. some people like to pray, some think it works just enjoy every moment. There r survivors so never give up.   hope this helps.

mikey

Thank you for posting this survival story, I am so glad that there are facilities willing to try. My father had survived for 5 years from EC cancer, originally through microwave treatment. When it returned after 5 yrs we could not find a facility to treat him. We had to fight just for a feeding tube to be put in when the tumor block him from eating. We later found out in a different hospital that the feeding tube had been put in improperly and had to be corrected. I have always wondered if they did it intentionally because they had refused to put it in and wanted him to starve to death. My Mom loudly insisted that they put one in anyway...  My father died Dec. 2004 more from the pneumonia that had set in and caused his kidneys to fail than from the cancer.  He was an awesome person that loved to travel and go for the adventurous expeditions through earthwatch. He really was the Indian Jones in living color and loved life.  He had a great laugh that was contagious you couldn’t be in the same room with him and not be uplifted by his warmth and sense of humor.  It is a tragedy that he was not saved and I know they could have if they only wanted to.

On 1/30/2008 GeorgesGirl wrote:

There are many survivor stories on this board that are very encouraging! I have pasted one here that I just found today. Some others sites that I have found survivor stories are www.acor.org and www.eccafe.org. Hope this helps!  

Today marked a milestone, the end of the beginning, and a giant leap of faith that we can
put one more reminder of esophageal cancer behind us.  We spent the day at the brand new
inpatient interventional radiology facility at U. of Colorado so that Dick could have his
port removed.
The port was the first tangible sign that he was given the opportunity to fight his Stage
IVb EC diagnosis with metastases to lymph nodes, lungs and liver after being told by
another oncologist he had no chance of survival.  And today, after more than 38 months in
his chest, 19 months of not being used. and approximately 7-8 PET/CT scans that have shown
no clinical signs of recurrence, all of us, Dick and I, his physicians, his nurses, and
the rest of his support team, have concurred - the port could come out. No more safety
net, no more monthly flushing and no more lurking thoughts in the back of the mind that it
might be needed again!  For now we have freedom from the tangible reminder of months of
chemotherapy and ancillary treatments and freedom to  focus on the fact that the port had
become obselete for him..
As I waited outside for Dick to have the port removed,  delayed more than 3 1/2 hours
because of the massive number of patients in the interventional radiology treatment area,
I replayed the memories and feelings that I had more than 3 years ago, when it was
inserted the day before Dick began his first round of chemotherapy. We both were in a dark
and desperate place then, having spent almost 3 weeks to find a physician that would at
least consider treating Dick and giving him a chance.  It was a strange emotional turmoil
that I went through that day, with gratitude that,  at last,  the first step in treatment
was to begin, balanced against  the overwhelming weight of the knowledge that this step
was likely to be futile.
    The senior interventional radiology fellow removed Dick's port today, and he remembers
when Dick first was discussed among the oncology teams at Anschutz, Univ. of Colorado,
during his first year of training.    He said today that Dick's name keeps coming up when
they are discussing other cases and that Dick's responses are reviewed when others with
similar problems and degrees of malignancy are being treated.  And he told us the sad fact
that many patients now cannot have the SIRspheres that eliminated Dick's liver tumors, for
insurance companies are simply not paying for them.  Dick was in the initial clinical
trial and the cost of the spheres was covered by the clinical trial protocol, and his
insurance paid for all of the ancillary charges.  What a catch-22 when insurance companies
say there are not sufficient numbers of patients to prove the efficacy and will not
approve a new treatment,  and more patients cannot be given the treatments because of the
expense!
Tonight we are home again, watching the snow fall gently on the evergreens and rocks
around our mountain home, realizing that one more bridge has been crossed and that one
more day has been a gift.
The  last tangible reminder of those dark early days beginning chemotherapy is now a
memory.
The Dickermans, Lois and Dick (dx Nov. 2004 Stage IVb esophageal adenocarcinoma with mets
to lymph nodes, lungs and liver.  No discernible tumors by PET/CT since July, 2006.)

What an amazing story!  Congratulations on your miraculous recovery.  My father was diagnosed with Stage IV EC on Jan2 2008 and has spread to his lymph nodes and liver.  He has lost so much weight from it not being diagnosed soon enough. He had trouble eating for 4-5 months.  He has been through his first round of chemo and is going to be starting his second.  He is 78 years old and is only 120 pounds right now.  He doesn't have much strength because he can't eat or drink much.  He currently has a feeding tube.  I am interested in what type of treatment plan you went through and any more details as well.  And if anyone else has any advice or information it would  be much appreciated.  Thanks so much!

Julie

"I am interested in what type of treatment plan you went through and any more details as well." 

 Hi Julie,

The story I posted was found at www.acor.org. I am a member of a list-serve there named EC-Group. There is a ton of information, survivor stories, etc. there too. I found out about it through another EC site-Cathy's EC at www.eccafe.org.     

My dad is not much farther along in this thing that yours. He was diagnosed 12/18/07, found out about mets. to the lung 1/3/08, and started chemo 1/9/08. He has only had two treatments because he was hospitalized for 3 out of the first 4 weeks. He is willing to fight and attitude is everything from what everyone says. He is 5' 11" and weighed 210 lbs at Christmas. He now weighs 171 lbs. He also has a feeding and we are working up to taking more of the supplement everyday.

Please keep us posted on how things go and I will keep you both in my prayers.

God Bless

Hey Lady,

You hang in there! There are many more stories that I have found where even stage IV  survivors have kicked this monster in the teeth!

On 1/31/2008 GeorgesGirl wrote:

"I am interested in what type of treatment plan you went through and any more details as well." 

 Hi Julie,

The story I posted was found at www.acor.org. I am a member of a list-serve there named EC-Group. There is a ton of information, survivor stories, etc. there too. I found out about it through another EC site-Cathy's EC at www.eccafe.org.     

My dad is not much farther along in this thing that yours. He was diagnosed 12/18/07, found out about mets. to the lung 1/3/08, and started chemo 1/9/08. He has only had two treatments because he was hospitalized for 3 out of the first 4 weeks. He is willing to fight and attitude is everything from what everyone says. He is 5' 11" and weighed 210 lbs at Christmas. He now weighs 171 lbs. He also has a feeding and we are working up to taking more of the supplement everyday.

Please keep us posted on how things go and I will keep you both in my prayers.

God Bless

Thanks so much for the website..I will check it out tonight!  It was so hard to come home and see my father as weak and skeletal as he is.  I live out of state and feel very helpless.  I hope your father does well...sounds like he will with his good attitude.  I will keep you posted and know that you are in my prayers as well.

Julie