My husband has Stage IV EC
I am very frustrated and feel like they are just buying time now, not really trying to get rid of this cancer. Why can’t they do radiation for the bone and surgery for the liver? We heard about this new proton radiation that does less damage to surrounding tissue. Our Dr keeps telling us we are not candidates for surgery because it has spread too much, but I feel like it is our only hope. I am thinking about getting a 2nd opinion on his protocol, perhaps from MD Anderson? He is at Sloan now, as we live in NY, with a top oncologist. I don't know if I should really be pushing Dan to get another opnion and radically change his diet (I have him at least reading the "Anti-Cancer" book, but he still eats beef sometimes!), or if I should just accept that this a no-win situation and just ride this slippery slope down to the inevitable outcome. I have lost both of my parents (my mom just 2 yrs ago) and I have no children, so I am feeling very alone and terrified. This is a 2nd marriage for us and we have only been married for 6 yrs. We were planning our retirement (we are both in our late 50s) but now we know that that is not realistic. Any help or advice would be appreciated.
Comments
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Hi wife of Dan
I am so sorry that you have found yourself here, you will find a wealth of information from those living with EC, those whose spouses have EC and those who have lost someone with EC yet still come back to help us out. We don't mince words here, honesty is really important, my husband was diagnosed in Aug 2010 with stg iv mets to the lungs now bones as well so I do understand the terror and frustration you are feeling. I would always recommend a second opinion but be aware it may be the same as the first opinion. If your Dan is definitely stg iv then there are no surgery options it has already spread, your Onc is quite right and even tho we don't want to hear it it is good that your Onc has the gumption to tell it as it is.
With regards to changing Chemo regimes this happens from time to time due to different reactions, my husband now has no more Chemo as it is no longer effective, he has just gone through 5 zaps of radiation to see if it would help with his eating, so far all it has done is make him really ill and tired, treatment for stg iv is palliative only, anything tried is more to slow the spread of the disease and keep the patient as active in his/her life as possible.
I'm sorry that I have no real advice other than to keep positive, do all the things that you have been planning when and if you can there are good days and there are not so good days, the good ones grab with both hands they are precious, one last thing has your husband got a feeding tube, mine can't, but I know in the US these are available and have been truly godsends to alot on this board, even if he doesn't need it now, look at it as a back up plan. I'm sure others will be on board soon to encourage and advise they know more about feeding tubes than me.
Will be thinking of you and your Dan.
Ann0 -
Ann is correctfredswilma said:Hi wife of Dan
I am so sorry that you have found yourself here, you will find a wealth of information from those living with EC, those whose spouses have EC and those who have lost someone with EC yet still come back to help us out. We don't mince words here, honesty is really important, my husband was diagnosed in Aug 2010 with stg iv mets to the lungs now bones as well so I do understand the terror and frustration you are feeling. I would always recommend a second opinion but be aware it may be the same as the first opinion. If your Dan is definitely stg iv then there are no surgery options it has already spread, your Onc is quite right and even tho we don't want to hear it it is good that your Onc has the gumption to tell it as it is.
With regards to changing Chemo regimes this happens from time to time due to different reactions, my husband now has no more Chemo as it is no longer effective, he has just gone through 5 zaps of radiation to see if it would help with his eating, so far all it has done is make him really ill and tired, treatment for stg iv is palliative only, anything tried is more to slow the spread of the disease and keep the patient as active in his/her life as possible.
I'm sorry that I have no real advice other than to keep positive, do all the things that you have been planning when and if you can there are good days and there are not so good days, the good ones grab with both hands they are precious, one last thing has your husband got a feeding tube, mine can't, but I know in the US these are available and have been truly godsends to alot on this board, even if he doesn't need it now, look at it as a back up plan. I'm sure others will be on board soon to encourage and advise they know more about feeding tubes than me.
Will be thinking of you and your Dan.
Ann
There is no pretty way to present your situation and you don't need that anyway. As Ann says, your oncologist is right on with what he has told you. I would never suggest not getting a second, if nothing else you have two doc saying the same thing. I am a stage IV and was diagnosed in April 2010. At that time I was told I had less than 6 months so get my house in order. It has not been easy and I have had many set backs, but nearly two years later I am still here, taking care of myself,and taking every day as it comes. I have times when getting up in the morning is an effort and then I have days when I can go out, walk a mile or so, weed the flowers and play with the horse. The best advice I can give you and your husband is deal with the issues but don't let this cancer control everyday of your life. You will be wasting precious time. I have had Cistplatin, 5FU, Epirubison, Xeloda and am now on Taxatere. I have also had radiation. My original tumor was shrunk completely and the spot in my liver cleaned up by the fall of 2010. Things went well til the summer of 2011. During this period I was on Xeloda. It no longer controlled things so now I am on Taxatere. After 13 months of non stop chemo, I am beginning a 6-8 week "holiday" and then will start Taxatere again. Once it stops working we will try something else. Many stage IV's choose to do nothing and just let the disease take its course. I respect that and support them, that just isn't me. I am choosing to go down fighting as I have done all my life. Stay on the board, it will help you get thru. I will be praying for you and your husband and trust that you will be lead to make the right decisions. Sam Stage IV0 -
I am also a wife of a stage IV
I am also a wife of a stage IV husband and I understand your pain. My husband was DX in October, and he is currently receiving chemo. Although we received a very good PET scan result this time, our doctor was clear that this is not a cure. Chemo for stage IV is palliative care. We did go for a second opinion and were told the same thing. Surgery is not an option so chemo is the only thing to give us some time. If it puts your mind at ease then do it, it will not hurt. We are learning to take it one day at a time and we plan as much as we can for the "good" off weeks. I understand feeling scared and alone, we have been married 26 years and are empty nesters looking forward to travel and good times. I will keep you in my prayers!
Cindy0 -
This comment has been removed by the Moderatorfredswilma said:Hi wife of Dan
I am so sorry that you have found yourself here, you will find a wealth of information from those living with EC, those whose spouses have EC and those who have lost someone with EC yet still come back to help us out. We don't mince words here, honesty is really important, my husband was diagnosed in Aug 2010 with stg iv mets to the lungs now bones as well so I do understand the terror and frustration you are feeling. I would always recommend a second opinion but be aware it may be the same as the first opinion. If your Dan is definitely stg iv then there are no surgery options it has already spread, your Onc is quite right and even tho we don't want to hear it it is good that your Onc has the gumption to tell it as it is.
With regards to changing Chemo regimes this happens from time to time due to different reactions, my husband now has no more Chemo as it is no longer effective, he has just gone through 5 zaps of radiation to see if it would help with his eating, so far all it has done is make him really ill and tired, treatment for stg iv is palliative only, anything tried is more to slow the spread of the disease and keep the patient as active in his/her life as possible.
I'm sorry that I have no real advice other than to keep positive, do all the things that you have been planning when and if you can there are good days and there are not so good days, the good ones grab with both hands they are precious, one last thing has your husband got a feeding tube, mine can't, but I know in the US these are available and have been truly godsends to alot on this board, even if he doesn't need it now, look at it as a back up plan. I'm sure others will be on board soon to encourage and advise they know more about feeding tubes than me.
Will be thinking of you and your Dan.
Ann0 -
Hello
First of all I, too, would like to welcome you to this discussion board. The folks on here are knowledgeable and very supportive. You will get honest answers - some of them may be hard to read but this is a no sugar coating group who just tell it like it is. While no cancer is a good cancer, this one is especially hard - particularily Stage IV. It's not curable but as Sam said, it can be treated to buy some time. I would also encourage you to have your husband go for a second opinion. You want to do absolutely everything you can do for peace of mind that you are giving it your all. However, if he is stage IV, his doctor is right and surgery is not an option.
My husband also had trouble with blood clots. He suffered a severe stroke just 9 days after the cancer diagnosis when one of them traveled to his brain. I'm not trying to scare you but this is definately something to be aware of.
Come back and ask all the questions you can. There's so much to be gained from this group. They're the most caring and compassionate bunch you'll never meet.
Please give us your name - real or not. It's easier and more friendly to address someone by name.
Rita0 -
Thanks for the supportritawaite13 said:Hello
First of all I, too, would like to welcome you to this discussion board. The folks on here are knowledgeable and very supportive. You will get honest answers - some of them may be hard to read but this is a no sugar coating group who just tell it like it is. While no cancer is a good cancer, this one is especially hard - particularily Stage IV. It's not curable but as Sam said, it can be treated to buy some time. I would also encourage you to have your husband go for a second opinion. You want to do absolutely everything you can do for peace of mind that you are giving it your all. However, if he is stage IV, his doctor is right and surgery is not an option.
My husband also had trouble with blood clots. He suffered a severe stroke just 9 days after the cancer diagnosis when one of them traveled to his brain. I'm not trying to scare you but this is definately something to be aware of.
Come back and ask all the questions you can. There's so much to be gained from this group. They're the most caring and compassionate bunch you'll never meet.
Please give us your name - real or not. It's easier and more friendly to address someone by name.
Rita
I guess I have been in some denial for the past 6 months. Our Dr would tell us stories about 2 of his patients that made it to 3 yrs and are still around. He felt that since Dan had no other health issues, and is relatively young and strong, that he could be one of those patients. Then there is always the hope to buy enough time for some new treatment. Then there are the stories like the one we experienced with Dan's sister-in-law who was diagnosed with Stage IV lung cancer and told she had 3-6 months to live 9 yrs ago and she is still here and doing well. But now that his last scan showed progression of his cancer, I am not so hopeful. Part of me wants to believe that they could just cut the cancer out at its various locations and radiate the rest, but I guess if the cancer cells are out there in his body it wouldn't do any good...? I have read about a drug they are researching that would prevent the tumors from getting resistant to the chemo. I guess that is the type of thing we can hope for to become available. From reading the posts here I guess I should feel lucky that Dan is still doing so well 7 months into his diagnosis. He is working full time, golfing, and we are doing some traveling and seeing friends. In fact, it's hard to believe that he is so sick. He has no pain or naseau, has not lost weight, and is eating perfectly well without the stent. It is just so hard to accept that this cancer is lurking and now growing in various parts of his body. I am trying to keep a positive attitude because I don't want to waste this time we have while he is feeling well. But this last scan really burst my bubble. Dan remains positive and is determined to put "life in the foreground and cancer in the background". He is handling it much better than I.
Sue0 -
Welcome Suewifeofdan said:Thanks for the support
I guess I have been in some denial for the past 6 months. Our Dr would tell us stories about 2 of his patients that made it to 3 yrs and are still around. He felt that since Dan had no other health issues, and is relatively young and strong, that he could be one of those patients. Then there is always the hope to buy enough time for some new treatment. Then there are the stories like the one we experienced with Dan's sister-in-law who was diagnosed with Stage IV lung cancer and told she had 3-6 months to live 9 yrs ago and she is still here and doing well. But now that his last scan showed progression of his cancer, I am not so hopeful. Part of me wants to believe that they could just cut the cancer out at its various locations and radiate the rest, but I guess if the cancer cells are out there in his body it wouldn't do any good...? I have read about a drug they are researching that would prevent the tumors from getting resistant to the chemo. I guess that is the type of thing we can hope for to become available. From reading the posts here I guess I should feel lucky that Dan is still doing so well 7 months into his diagnosis. He is working full time, golfing, and we are doing some traveling and seeing friends. In fact, it's hard to believe that he is so sick. He has no pain or naseau, has not lost weight, and is eating perfectly well without the stent. It is just so hard to accept that this cancer is lurking and now growing in various parts of his body. I am trying to keep a positive attitude because I don't want to waste this time we have while he is feeling well. But this last scan really burst my bubble. Dan remains positive and is determined to put "life in the foreground and cancer in the background". He is handling it much better than I.
Sue
Hate to Welcome you to this roller coaster we call life with EC, but you have stumbled into one of the most informed, most caring cancer boards available.
Dan's positive attitude and ability to handle his EC better than you reminds me of my journey through EC with my husband. I was a mess, he just took things in stride. I believe it's because the one with EC is actively doing something to halt or reduce the cancer, while us caregivers can only offer hugs and support. Active roles, yes, but not truly an active participating "fix it" role. Very difficult to come to terms with something that we can't see that we know is taking control of our loved ones bit by bit.
Please know that we are here for both you and Dan. We are here to support you, inform you, hooray with you, cry with you, and pray with you.
Love & Hugs to you both,
Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
THE 09/08/11
Clean Path 09/13/110 -
MD Anderson
Sue,
My husband was diagnosed with Stage IV EC in October of 2010. We immediately went to MD Anderson to seek treatment. We were told, just as you were, that this disease was not curable or operable, only manageable. My husband desperately wanted to live and chose to fight "the beast" with everything he had. At the time he was diagnosed his tumor was 20 cm long covering the whole esophagus from top to bottom, and into the stomach. Our Dr. at MD Anderson prescribed a chemo regime called D-FOX which consisted of 5FU, oxaliplatin, and Taxotere. In January 2011 when a new CT scan was taken it showed that there were mixed results. We decided to try a clinical trial that involved a placebo, without good results (figured we had the placebo!). In March of 2011 he started on Erbitux (Cetuximab, which is a monoclonal antibody) and Irinotecan (Camptosar) which gave him good results for 6 months. In October of 2011 we were told that the cancer was again growing and that there was nothing further they could do in that department. We were however offered treatment through their Targeted Therapy Center, where they tailor the medication to you specifically. Rickie was hoping to return to MD Anderson after the holidays to begin this treatment. Shortly after we returned home in October however, it was found that the cancer had spread to his brain. He passed away on January 4th of this year. We never once regretted the decision we made to go to MD Anderson, and felt that we were offered the best treatment possible. MD Anderson is on the cutting edge of researching new drugs and we felt that that was in our favor. Rickie wanted to fight this to the end and he did. At the time he was diagnosed according to the doctor’s notes, because of the extent of the tumor, his life expectancy was about 12 weeks. He managed to survive 15 months. He felt throughout this time that his quality of life was good and we were able to spend some wonderful family time together.
You can self refer to MD Anderson through their website. This is how we did it. There are also many articles on their website to help you understand EC and how they treat it. Hope this helps you.
Cheryl
Wife of Rickie, dx Stage IV EC Oct. 2010
Mets to bones and brain
Deceased Jan. 4, 20120
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