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Esophageal cancer RESEARCH!!! Lets GO!

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Hi all---my EC CSN friends that are so intimately affected by EC.

I don't want to repeat my (and my dad's) whole story bc it is so similar to all of yours and we are all in this together.---but if you want more info---just ask- :)

I have been very involved in my dad's journey with EC and know it is far from over. I have been trying to think of something to do for my dad bc I was never quite able to do a "real" Christmas present for mom & dad" bc of all that was going on... Also, any of the usual presents seemed very meaningless when one is fighting for their life!!! Anyway, I am thinking of the new year and all the usual "resolutions" that I have.
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I have been frustrated by the lack of public knowledge about EC and research funds!!! We kept joking that someone FAMOUS ----NEEDS to get EC before there is a great surge of funding for research for this disease!!!!!! Even my dad's medical oncologist said they were frustrated seeing all the pink ribbons when there is not much info/research out there about EC....

I am researching about opportunities to actually make a difference about EC---not just fund a foundation some where that we (all) have no control or confidence in....

I truly believe that bc Ec is not very common and often is diagnosed at later stages--(less time for fund raising)====THAT WE AS A COMMUNITY WILL HAVE TO WORK EXTRA HARD TO MAKE A DIFFERENCE!!!!!!!

So---I will be looking into making a difference in this area---I will keep you informed and will not ask for direct donations--I just want to make a difference on my dad's behalf!

We are the ones that have to make a difference in 2010 for ESOPHAGEAL CANCER>>>>!!
Kim

My dad was teary eyed just thinking about a clinical trial---knowing "if he didn't make it" --- "at least someone would learn something useful". I know we all wan things to be better for other that have to deal with this disease.

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hey Kim,

Al has a Drs.appt on Wed. At The Hillman Cancer Ctr..I will be meeting with the social worker I will ask if she knows of any such organizations.

I think it is a great idea.

I do know that that have colon ca awarness month. I think alot of lives would be saved by an
EC awarness month.

God Bless
Kath

survivorfam
Posts: 43
Joined: Jan 2010

Dear Kim,
I too think that there needs to be more info about EC out there. Neither my husband nor I really understood the significance of his being diagnosed with Barrett's Esophagus until he was diagnosed with stage III EC this past July. I know if I had been aware of the connection between the two, I would have been much more careful with his diet and paid more attention to some of his complaints.

I would also have liked to know about the CSN earlier on. I didn't find all of you until New Year's Eve and his treatment and surgery had already taken place. It would have been so nice to have had all of you through this process. We have wonderful friends but I have often felt alone during these past 5 months.

I am definitely looking into how I can make a difference in my local community through my husband's oncologist and our local cancer center. I admire your passion and know that you will find your place. I look forward to hearing more from you.

Jane

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Kim,

I am with you on this. I would love to have something like that going on just like they have the pink ribbon around why not our ribbon around things. I agree with your dad what a way to start the new year. Yes please keep us updated, and so what if you find a funding its for our EC people, you head it up we will be there for support and all.

I hope your dad is doing well, its been awhile since you posted anything, I was getting worried about you.

Maybe if everyone knew about EC we wouldn't haven't lost the ones we have on this site. I did order a shirt from Patrick, on Cathy that says "CATHY'S TEAM FIGHT ESOPHOGEAL CANCER" and I wear it proudly. We need a shirt or something like that, that says ESOPHOGEAL CANCER SUCKS, OR LETS FIGHT FOR ESOPHOGEAL CANCER ETC, thats a good idea I think

Keep in touch
Lori aka MOE

rnic22
Posts: 9
Joined: Aug 2009

Here is a link to a great site trying to get the word out about this monster.(copy and paste)
http://ecan.convio.net/site/PageServer?pagename=Home

I read all the posts here. I lost my Dad to this monster September 12, 2008. I eat, drink and breathe Esophageal Cancer. I wish there was something besides esophagectomies to help this.

My thoughts and prayers are with all of you going through this journey.

Rolinda Nichols

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Thanks Rolinda---I have never seen that site even though I have done a lot of research this past 6 months! I joined and want to support EC prevention, awareness and research however I can. I am posting it again for all of you to visit: (Copy & paste to visit and to share with others) http://ecan.convio.net/site/PageServer?pagename=Home

I also joined via facebook to be able to share with friends & relatives---they are trying to make April 2010 the first EC Awareness month! DId you know that EC increasing at a faster rate than any other cancer diagnosis in the US?

I am committed to making a difference and am doing it in honor of my dad and all those that have "met" through this website!

My dad is doing well right now (Holding my breath & thanking the Lord). (had surgery 12/7-went home with feeding tube since he failed first swallow test). Pathology report was totally positive! He has begun eating real food a little at a time---has feeding tube for some at night. He tries to walk 2 miles a day, but the cold still bothers him quite a bit. He is a small guy so needs to start putting on some weight to make me really feel better. I have not posted much about him because it felt funny doing so when there has been such EC saddness lately...
Kim

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Wow, you are heading it up, I have joined that site, and I am here to help, I might have other things happening but I am here to support it, I truly don't want this disease and we have seen too many of our CSN family pass away, lets get out there and fight. I am here, and will continue to fight it. If only kitten was here she would too. I will pass this on to her friends though.

Keep in touch

Lori aka MOE

survivorfam
Posts: 43
Joined: Jan 2010

Thank you so much for bringing this site to my attention. I am committed to helping find my place in this fight and you have given me a wonderful resource.

Jane

Pghmomma
Posts: 161
Joined: Nov 2009

Kim, I think what you are doing is great!!!

I agree completely with you that THIS UGLY EC needs to have more info out there and the world needs to be informed about all the effects. So EVERYONE can get a dx early on instead in a late stage.

I too will be joining and helping in every way possible.

weezie47
Posts: 22
Joined: Dec 2009

Kim, It is great in what you are doing. I checked the site out briefly, and will review it further when I have more time. I agree with you that we need to get the word out! I found a website where you can purchase items to help this cause. http://www.choosehope.com/category/esophageal-cancer-periwinkle I have not purchased anything yet, but plan on doing so in the future. Hope it is helpful!

dwhite0002
Posts: 130
Joined: Jan 2010

Hi Kim,

I am a 35 year old 3-year EC survivor. I agree with you that there is NOT MUCH OUT THERE> Here is s site I have discovered. I am a member and they produce interesting newsletters, etc. You might even find omeone to contact directly to help you with your journey.

The website is:

http://www.ecaware.org/

I hope this helps.

God-Speed,

David
Hillsboro, OH

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