Alternative Esophageal Cancer Sites

BMGky
BMGky Member Posts: 621
Hi, friends.

I guess posting about alternative sites for information is not within the purview of acceptable postings.

It is even possible that those who advocate such postings are no longer permitted to post.

As we are all family here, there is nothing worse than a family disagreement.

This site is invaluable. The other sites are likewise.

Our goal here is to help as many as possible to be EC survivors. All information is important.

Any suggestions on how to get the word out about other sites?

www.esophagealcancerfighters.com is working to provide information that cannot be located here. Also, ECAN is great to help. There is an open Esophageal Cancer Board on several social networking sites.

Some sites are private; however, links, I believe, to private sites and others can be found at esophagealcancerfighters.com

Let's hope we can get information to those who come to this site seeking help. If it can't be found here, surely, it is permissible to suggest other sites.

BMGky
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Comments

  • NLMCEM
    NLMCEM Member Posts: 50
    other sites
    I just tried to add a link for another site and its under review but after reading your post I am guessing it will not post. I was trying to send all to this place http://www.ecan.org/site/PageServer?pagename=Home
    I learned about from my husbands doctor who is trying to get more research and funds for research for Esophageal cancer
  • Amjosmom
    Amjosmom Member Posts: 212
    NLMCEM said:

    other sites
    I just tried to add a link for another site and its under review but after reading your post I am guessing it will not post. I was trying to send all to this place http://www.ecan.org/site/PageServer?pagename=Home
    I learned about from my husbands doctor who is trying to get more research and funds for research for Esophageal cancer

    For the "Newbies."
    This site is active. Please join. Also, www.4vitality.org Share your stories and meet people who are fighting this battle, too!
  • Amjosmom said:

    For the "Newbies."
    This site is active. Please join. Also, www.4vitality.org Share your stories and meet people who are fighting this battle, too!

    BMGky thanks~I like the EsophagealCancerFighters.com site
    Dear “BMGky & Amjosmom”

    Thank you for mentioning other forums where patients can discuss Esophageal Cancer. After reading your posts, I went there. Glad to know the EsophagealCancerFighters.Com site is active. I see that both “William W. Marshall” and “Bailey1459” (Sherri) are posting there as well as the "Vitality" site. I have learned so much from both of them during the past year. Actually, I have saved several of their postings from this site, for my own file. They certainly were so helpful to me when I sought help for my own relative. I will begin reading there as well.

    Since all the information posted here is public and voluntary, one can’t imagine that it would be a violation to share helpful information with patients suffering with Esophageal Cancer. After all, this and all other sites are for the express purpose of sharing personal stories, whether they be sad or happy ones, about how the patients fared in their battle with this most often deadly Esophageal Cancer.

    Sincere thanks,
    “Flo”
  • goty2001
    goty2001 Member Posts: 71

    BMGky thanks~I like the EsophagealCancerFighters.com site
    Dear “BMGky & Amjosmom”

    Thank you for mentioning other forums where patients can discuss Esophageal Cancer. After reading your posts, I went there. Glad to know the EsophagealCancerFighters.Com site is active. I see that both “William W. Marshall” and “Bailey1459” (Sherri) are posting there as well as the "Vitality" site. I have learned so much from both of them during the past year. Actually, I have saved several of their postings from this site, for my own file. They certainly were so helpful to me when I sought help for my own relative. I will begin reading there as well.

    Since all the information posted here is public and voluntary, one can’t imagine that it would be a violation to share helpful information with patients suffering with Esophageal Cancer. After all, this and all other sites are for the express purpose of sharing personal stories, whether they be sad or happy ones, about how the patients fared in their battle with this most often deadly Esophageal Cancer.

    Sincere thanks,
    “Flo”

    acor.org
    I hope nobody gets kicked off from here for mentioning other sites. surely not. speaking of other sites - seems to be a lot of discussion on acor.org ... but I think I'll have more luck self-curing my stage IV than I will posting a reply there. (would love to know if anybody has any tips in this regard)
  • paul61
    paul61 Member Posts: 1,392 Member
    goty2001 said:

    acor.org
    I hope nobody gets kicked off from here for mentioning other sites. surely not. speaking of other sites - seems to be a lot of discussion on acor.org ... but I think I'll have more luck self-curing my stage IV than I will posting a reply there. (would love to know if anybody has any tips in this regard)

    How to reply on ACOR.ORG
    If you are reading a post on the site itself, look to the right of the box that contains the message you are reading and you will see the word "reply" in blue. Click on that word and it will open a page for you to enter your reply message.

    If you want to post a new message, look farther to the right under "Options" and you will see "post new message" click on that and it will open a page for you to post a new message topic.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Amjosmom
    Amjosmom Member Posts: 212
    paul61 said:

    How to reply on ACOR.ORG
    If you are reading a post on the site itself, look to the right of the box that contains the message you are reading and you will see the word "reply" in blue. Click on that word and it will open a page for you to enter your reply message.

    If you want to post a new message, look farther to the right under "Options" and you will see "post new message" click on that and it will open a page for you to post a new message topic.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

    Lurker...
    I just lurk at ACOR. There seems to be some occassional info there, but I go to ECF, FB, CSN and I do LOTS of research for my forum 4Vitality. Goty, I'd love to get your story on 4V. If you're interested, please PM me. Thanks.
  • jaycc
    jaycc Member Posts: 122
    Amjosmom said:

    Lurker...
    I just lurk at ACOR. There seems to be some occassional info there, but I go to ECF, FB, CSN and I do LOTS of research for my forum 4Vitality. Goty, I'd love to get your story on 4V. If you're interested, please PM me. Thanks.

    across the web, across the family EC sites
    EC cancer fighters.com is showing a list of sites.
    Also Ecaware, (non-profit, goal keeping people in tough) also posts a list of contacts with emails. and 2500 members in Facebook for discussion.
    Acor.org has an active discussion board.

    I greatly hope in the small world of EC, we can put the politics of websites aside, and focus on getting people in tough with people.

    With 17,00 diagonsised, and 15,000 passing away, we have to stay together. Newbies are growing and survivors are so precious.

    Keep up all the good work here, it is so important, and it is one of the first discussion boards that comes up when your google EC.
  • Amjosmom
    Amjosmom Member Posts: 212
    Amjosmom said:

    Lurker...
    I just lurk at ACOR. There seems to be some occassional info there, but I go to ECF, FB, CSN and I do LOTS of research for my forum 4Vitality. Goty, I'd love to get your story on 4V. If you're interested, please PM me. Thanks.

    Moving to the top...
    For the newbies... check it out!
  • BMGky
    BMGky Member Posts: 621
    Amjosmom said:

    Moving to the top...
    For the newbies... check it out!

    Hopefully, it will reach
    Hopefully, it will reach newbies. Good idea.
  • TerryV
    TerryV Member Posts: 887
    jaycc said:

    across the web, across the family EC sites
    EC cancer fighters.com is showing a list of sites.
    Also Ecaware, (non-profit, goal keeping people in tough) also posts a list of contacts with emails. and 2500 members in Facebook for discussion.
    Acor.org has an active discussion board.

    I greatly hope in the small world of EC, we can put the politics of websites aside, and focus on getting people in tough with people.

    With 17,00 diagonsised, and 15,000 passing away, we have to stay together. Newbies are growing and survivors are so precious.

    Keep up all the good work here, it is so important, and it is one of the first discussion boards that comes up when your google EC.

    Are these numbers right?
    Jaycc,

    You said "With 17,00 diagonsised, and 15,000 passing away" - are these numbers possibly right? I know the odds with EC are bad, but this bad? WOW!

    Blessing to all of you in the fight. I hope you have the fortune and medical care necessary to bring you to number in the survivors.

    Knowledge is our power against EC. Learn from those before you.

    Terry
    PROUD wife to Nick, age 49
    lost EC battle, June 19, 2012
  • TerryV
    TerryV Member Posts: 887
    jaycc said:

    across the web, across the family EC sites
    EC cancer fighters.com is showing a list of sites.
    Also Ecaware, (non-profit, goal keeping people in tough) also posts a list of contacts with emails. and 2500 members in Facebook for discussion.
    Acor.org has an active discussion board.

    I greatly hope in the small world of EC, we can put the politics of websites aside, and focus on getting people in tough with people.

    With 17,00 diagonsised, and 15,000 passing away, we have to stay together. Newbies are growing and survivors are so precious.

    Keep up all the good work here, it is so important, and it is one of the first discussion boards that comes up when your google EC.

    Duplicate
    Oops....
  • tcaba
    tcaba Member Posts: 41
    jaycc said:

    across the web, across the family EC sites
    EC cancer fighters.com is showing a list of sites.
    Also Ecaware, (non-profit, goal keeping people in tough) also posts a list of contacts with emails. and 2500 members in Facebook for discussion.
    Acor.org has an active discussion board.

    I greatly hope in the small world of EC, we can put the politics of websites aside, and focus on getting people in tough with people.

    With 17,00 diagonsised, and 15,000 passing away, we have to stay together. Newbies are growing and survivors are so precious.

    Keep up all the good work here, it is so important, and it is one of the first discussion boards that comes up when your google EC.

    Numbers
    Unfortunately, those numbers are somewhat correct in that they come from the ACS but they ARE a broad and somewhat misleading definition.

    Stage 5-Year Relative Survival Rate
    Localized 37% In the esophagus
    Regional 18% Spread to lymph nodes
    Distant 3% Spread to lymph nodes and other organs


    www. seer.cancer.gov has detailed statistics, enough that they can be used as a sleep aid!

    BUT

    You have to be careful how you read EVERYTHING on the web.

    When I was diagnosed in 2010 the first thing I did was research and I mean it was a SCARY AS HELL. All the info is overwhelming and mind numbing and It can suck you into a hole that can be difficult to escape.
  • TerryV
    TerryV Member Posts: 887
    tcaba said:

    Numbers
    Unfortunately, those numbers are somewhat correct in that they come from the ACS but they ARE a broad and somewhat misleading definition.

    Stage 5-Year Relative Survival Rate
    Localized 37% In the esophagus
    Regional 18% Spread to lymph nodes
    Distant 3% Spread to lymph nodes and other organs


    www. seer.cancer.gov has detailed statistics, enough that they can be used as a sleep aid!

    BUT

    You have to be careful how you read EVERYTHING on the web.

    When I was diagnosed in 2010 the first thing I did was research and I mean it was a SCARY AS HELL. All the info is overwhelming and mind numbing and It can suck you into a hole that can be difficult to escape.

    I recall how scary research was.....
    At the beginning, I was an Internet **** for information about EC. Then the sheer quantity of negative numbers began to get to me and I restricted myself to the CSN site. At least there were survivors AND hope found here.

    I guess I had forgotten how horrible the stats are for EC.

    Still - to those in the fight, do NOT give up. EC can be beaten. There are several here that are *living* proof of that.

    Terry
    PROUD wife to Nick, age 49
    lost battle to EC, June 19, 2012
  • crystalbay
    crystalbay Member Posts: 38
    Daily Strength
    Daily Strength has online support groups for every imaginable health issue, including EC. It's very supportive (the EC group), personal, and responsive. Just google "Daily Strength"and then "Esophageal Cancer Support Group"
  • jaycc
    jaycc Member Posts: 122

    Daily Strength
    Daily Strength has online support groups for every imaginable health issue, including EC. It's very supportive (the EC group), personal, and responsive. Just google "Daily Strength"and then "Esophageal Cancer Support Group"

    Esophageal Cancer sites that help
    Thanks Crystalbay,
    I'll look for it, and also add it to the Ecaware site links
  • jaycc
    jaycc Member Posts: 122
    tcaba said:

    Numbers
    Unfortunately, those numbers are somewhat correct in that they come from the ACS but they ARE a broad and somewhat misleading definition.

    Stage 5-Year Relative Survival Rate
    Localized 37% In the esophagus
    Regional 18% Spread to lymph nodes
    Distant 3% Spread to lymph nodes and other organs


    www. seer.cancer.gov has detailed statistics, enough that they can be used as a sleep aid!

    BUT

    You have to be careful how you read EVERYTHING on the web.

    When I was diagnosed in 2010 the first thing I did was research and I mean it was a SCARY AS HELL. All the info is overwhelming and mind numbing and It can suck you into a hole that can be difficult to escape.

    For those who like numbers
    Just FYI for those who like numbers.
    We are going to to look at the seer data along with some other sources to get the number of survivors up, and more visible, hoping to take some of the fear out of things posted on the web now.
  • Amjosmom
    Amjosmom Member Posts: 212
    jaycc said:

    Esophageal Cancer sites that help
    Thanks Crystalbay,
    I'll look for it, and also add it to the Ecaware site links

    Duplicate
    Sorry!
  • birdiequeen
    birdiequeen Member Posts: 319
    tcaba said:

    Numbers
    Unfortunately, those numbers are somewhat correct in that they come from the ACS but they ARE a broad and somewhat misleading definition.

    Stage 5-Year Relative Survival Rate
    Localized 37% In the esophagus
    Regional 18% Spread to lymph nodes
    Distant 3% Spread to lymph nodes and other organs


    www. seer.cancer.gov has detailed statistics, enough that they can be used as a sleep aid!

    BUT

    You have to be careful how you read EVERYTHING on the web.

    When I was diagnosed in 2010 the first thing I did was research and I mean it was a SCARY AS HELL. All the info is overwhelming and mind numbing and It can suck you into a hole that can be difficult to escape.

    As bad as the numbers are....
    in 2010, when my husband was dignosed, the 5-year relative survival rate for localized was 33%. So in just two short years survival, for that group, has increased 4%. I watch the seer website closely, as I am a numbers person.
  • BMGky
    BMGky Member Posts: 621
    Amjosmom said:

    Duplicate
    Sorry!

    It's good to see that there
    It's good to see that there are more and more sources for EC information. Please keep coming here as well as visiting the other sites. Glad to see the improvement in survival statistics. When my husband was diagnosed, the statistics were so very scary and they didn't tell the whole picture so I stayed away from sites having figures.
  • Amjosmom
    Amjosmom Member Posts: 212
    Amjosmom said:

    For the "Newbies."
    This site is active. Please join. Also, www.4vitality.org Share your stories and meet people who are fighting this battle, too!

    Adding new members...
    Today, I will be adding new members. If you're interested, come check us out. Share stories, support, add info, or lurk away. EC is a BEAST!! No one should feel alone!

    www.4Vitality.org

    ~Jayme
    Dad DX 8/2010 Stage IVB
    Still fighting STRONG