CancerCompass message board discussion started by sydoz on 1/30/2008 http://www.cancercompass.com/message-board/message/all,20488,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi just wandering if there is anyone who was diagnosed with stage IV EC that had spread to the liver that is still alive? thanks! sydoz Wed, 30 Jan 2008 00:00:00 GMT 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 canput one more reminder of esophageal cancer behind us.  We spent the day at the brand newinpatient interventional radiology facility at U. of Colorado so that Dick could have hisport removed.The port was the first tangible sign that he was given the opportunity to fight his StageIVb EC diagnosis with metastases to lymph nodes, lungs and liver after being told byanother oncologist he had no chance of survival.  And today, after more than 38 months inhis chest, 19 months of not being used. and approximately 7-8 PET/CT scans that have shownno clinical signs of recurrence, all of us, Dick and I, his physicians, his nurses, andthe rest of his support team, have concurred - the port could come out. No more safetynet, no more monthly flushing and no more lurking thoughts in the back of the mind that itmight be needed again!  For now we have freedom from the tangible reminder of months ofchemotherapy and ancillary treatments and freedom to  focus on the fact that the port hadbecome obselete for him..As I waited outside for Dick to have the port removed,  delayed more than 3 1/2 hoursbecause 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 wasinserted the day before Dick began his first round of chemotherapy. We both were in a darkand desperate place then, having spent almost 3 weeks to find a physician that would atleast consider treating Dick and giving him a chance.  It was a strange emotional turmoilthat I went through that day, with gratitude that,  at last,  the first step in treatmentwas to begin, balanced against  the overwhelming weight of the knowledge that this stepwas likely to be futile.    The senior interventional radiology fellow removed Dick's port today, and he rememberswhen 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 whenthey are discussing other cases and that Dick's responses are reviewed when others withsimilar problems and degrees of malignancy are being treated.  And he told us the sad factthat many patients now cannot have the SIRspheres that eliminated Dick's liver tumors, forinsurance companies are simply not paying for them.  Dick was in the initial clinicaltrial and the cost of the spheres was covered by the clinical trial protocol, and hisinsurance paid for all of the ancillary charges.  What a catch-22 when insurance companiessay there are not sufficient numbers of patients to prove the efficacy and will notapprove a new treatment,  and more patients cannot be given the treatments because of theexpense!Tonight we are home again, watching the snow fall gently on the evergreens and rocksaround our mountain home, realizing that one more bridge has been crossed and that onemore day has been a gift.The  last tangible reminder of those dark early days beginning chemotherapy is now amemory.The Dickermans, Lois and Dick (dx Nov. 2004 Stage IVb esophageal adenocarcinoma with metsto lymph nodes, lungs and liver.  No discernible tumors by PET/CT since July, 2006.) GeorgesGirl Wed, 30 Jan 2008 00:00:00 GMT 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  mikeshan Thu, 31 Jan 2008 00:00:00 GMT Thanks for posting that story!!! tongrenhealer Thu, 31 Jan 2008 00:00:00 GMT 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. Auzzierun Thu, 31 Jan 2008 00:00:00 GMT  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 canput one more reminder of esophageal cancer behind us.  We spent the day at the brand newinpatient interventional radiology facility at U. of Colorado so that Dick could have hisport removed.The port was the first tangible sign that he was given the opportunity to fight his StageIVb EC diagnosis with metastases to lymph nodes, lungs and liver after being told byanother oncologist he had no chance of survival.  And today, after more than 38 months inhis chest, 19 months of not being used. and approximately 7-8 PET/CT scans that have shownno clinical signs of recurrence, all of us, Dick and I, his physicians, his nurses, andthe rest of his support team, have concurred - the port could come out. No more safetynet, no more monthly flushing and no more lurking thoughts in the back of the mind that itmight be needed again!  For now we have freedom from the tangible reminder of months ofchemotherapy and ancillary treatments and freedom to  focus on the fact that the port hadbecome obselete for him..As I waited outside for Dick to have the port removed,  delayed more than 3 1/2 hoursbecause 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 wasinserted the day before Dick began his first round of chemotherapy. We both were in a darkand desperate place then, having spent almost 3 weeks to find a physician that would atleast consider treating Dick and giving him a chance.  It was a strange emotional turmoilthat I went through that day, with gratitude that,  at last,  the first step in treatmentwas to begin, balanced against  the overwhelming weight of the knowledge that this stepwas likely to be futile.    The senior interventional radiology fellow removed Dick's port today, and he rememberswhen 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 whenthey are discussing other cases and that Dick's responses are reviewed when others withsimilar problems and degrees of malignancy are being treated.  And he told us the sad factthat many patients now cannot have the SIRspheres that eliminated Dick's liver tumors, forinsurance companies are simply not paying for them.  Dick was in the initial clinicaltrial and the cost of the spheres was covered by the clinical trial protocol, and hisinsurance paid for all of the ancillary charges.  What a catch-22 when insurance companiessay there are not sufficient numbers of patients to prove the efficacy and will notapprove a new treatment,  and more patients cannot be given the treatments because of theexpense!Tonight we are home again, watching the snow fall gently on the evergreens and rocksaround our mountain home, realizing that one more bridge has been crossed and that onemore day has been a gift.The  last tangible reminder of those dark early days beginning chemotherapy is now amemory.The Dickermans, Lois and Dick (dx Nov. 2004 Stage IVb esophageal adenocarcinoma with metsto 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 julieka68 Thu, 31 Jan 2008 00:00:00 GMT thanks so much for your story! it ha sort of eased my mind a little with my mum's condition i hope my mum and many others will overcome this annoying disease! thanks again! =) sydoz Thu, 31 Jan 2008 00:00:00 GMT "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 GeorgesGirl Thu, 31 Jan 2008 00:00:00 GMT 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! GeorgesGirl Thu, 31 Jan 2008 00:00:00 GMT  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 BlessThanks 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 julieka68 Fri, 01 Feb 2008 00:00:00 GMT HI all,I am in the same boat as many of you - my Dad was dx just over a year ago.   Went through chemo/rad (during which my Mom passed away from emphysema) and then surgery in May.   Was fine in spite of huge weight loss (from 300 to 175 lbs - clearly he had it to lose, but is now almost skeletal - he's 6'6") but started getting weird scan results just before Thanksgiving - long story short - after numerous scans with conflicting results, the last MRI decisively shows that his hip has been almost completely devoured.   He's in huge pain.   Having a full body ct/pet to look for more mets again on Tues.   He had new lung/liver lesions on last ct which were clear on pet, but I am now terrified those will be lighting up. I know the situation is very bleak, and I don't need anyone to tell me that - I am looking for stories of hope - and specific details of protocols people have followed to pull through such a horrible prognosis...   PLEASE help us!   I am still mourning the loss of my beloved Mom.   Our only consolation is in knowing that if we do lose him, he will be with his soul mate again. macybean Sat, 02 Feb 2008 00:00:00 GMT  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 canput one more reminder of esophageal cancer behind us.  We spent the day at the brand newinpatient interventional radiology facility at U. of Colorado so that Dick could have hisport removed.The port was the first tangible sign that he was given the opportunity to fight his StageIVb EC diagnosis with metastases to lymph nodes, lungs and liver after being told byanother oncologist he had no chance of survival.  And today, after more than 38 months inhis chest, 19 months of not being used. and approximately 7-8 PET/CT scans that have shownno clinical signs of recurrence, all of us, Dick and I, his physicians, his nurses, andthe rest of his support team, have concurred - the port could come out. No more safetynet, no more monthly flushing and no more lurking thoughts in the back of the mind that itmight be needed again!  For now we have freedom from the tangible reminder of months ofchemotherapy and ancillary treatments and freedom to  focus on the fact that the port hadbecome obselete for him..As I waited outside for Dick to have the port removed,  delayed more than 3 1/2 hoursbecause 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 wasinserted the day before Dick began his first round of chemotherapy. We both were in a darkand desperate place then, having spent almost 3 weeks to find a physician that would atleast consider treating Dick and giving him a chance.  It was a strange emotional turmoilthat I went through that day, with gratitude that,  at last,  the first step in treatmentwas to begin, balanced against  the overwhelming weight of the knowledge that this stepwas likely to be futile.    The senior interventional radiology fellow removed Dick's port today, and he rememberswhen 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 whenthey are discussing other cases and that Dick's responses are reviewed when others withsimilar problems and degrees of malignancy are being treated.  And he told us the sad factthat many patients now cannot have the SIRspheres that eliminated Dick's liver tumors, forinsurance companies are simply not paying for them.  Dick was in the initial clinicaltrial and the cost of the spheres was covered by the clinical trial protocol, and hisinsurance paid for all of the ancillary charges.  What a catch-22 when insurance companiessay there are not sufficient numbers of patients to prove the efficacy and will notapprove a new treatment,  and more patients cannot be given the treatments because of theexpense!Tonight we are home again, watching the snow fall gently on the evergreens and rocksaround our mountain home, realizing that one more bridge has been crossed and that onemore day has been a gift.The  last tangible reminder of those dark early days beginning chemotherapy is now amemory.The Dickermans, Lois and Dick (dx Nov. 2004 Stage IVb esophageal adenocarcinoma with metsto lymph nodes, lungs and liver.  No discernible tumors by PET/CT since July, 2006.)Please tell me what the course of treatment was for your husband that was soooo sucessful. Also how old was your husband when diagnosed? We are in a very dark place right now. My husband of 34 years (55 yrs old) has Stg IV EC & has completed chemo. We are going to get the results of his CT scan this Thurs.   Donna3 Fri, 21 Mar 2008 00:00:00 GMT