August 24, 2008 at 11:30 pm #21494lisaMember
I think we should try to raise awareness of cc. Maybe that will get more research done into the causes and treatments of this disease. After all, who ever heard of mesothelioma before activists and lawyers publicized the illness?August 23, 2008 at 5:27 pm #21493sophieMember
Okay, thanks guys, I will be sure to clarify in my letter about cc as far as its ranking.
My prayers for all of you,
SophieAugust 22, 2008 at 8:44 pm #21492
The above graph represents the survival percentages, and is taken from the NCI SEER website: http://www.seer.cancer.gov. The graphics did not turn out great, but if you look closely, you will see Liver and intrahepatic bile duct cancer is 3rd from the bottom. Pancreatic cancer is last.August 22, 2008 at 8:30 pm #21491August 22, 2008 at 8:27 pm #21490
Agreed with Kris and Joyce – Pancreatic Cancer has a slightly worse prognosis than cholangiocarcinoma.
I have some good graphics that might be helpful to include in the letter. Let me see if I can make these accessible online.August 22, 2008 at 3:41 pm #21489jcleggMember
I just read these posts about writing a letter – think it is a wonderful idea – would love to submit. Sophie – I love your letter, but – I agree with Kris – I was told at the Mayo that CC is 2nd – only pancreatic is worse – that is bad enough, however!
JoyceAugust 21, 2008 at 4:18 pm #21488sophieMember
You guys are the best! I think Irene’s idea on focusing on all Orphan Diseases is wonderful, and my statistics about pancreatic cancer and cc might be off. I couldn’t find any specific information about that.
Lainy and Jeff – I am deferring to you in all matters. From now on, I’d like you to call me Grasshopper. (Get it? David Carradine and Kung Fu) You teach, and I shall follow.
My prayers for all of you,
SophieAugust 21, 2008 at 2:58 pm #21487stacieMember
I absolutely love to see the energy running through the discussion boards. No offense could ever be taken by the board. We see patients and caregivers who are frustrated and want to see positive things happen with this cancer. We know, because we are experiencing the same thing.
We are always keeping up with the posts and what is happening on the website. I personally do so less now as I am working with the day to day details of running the foundation and this takes up a significant amount of time.
Jeff, Marion and Peter volunteering to be moderators on this site is a major reason that I was able to focus more on those things that will allow the foundation to push forward.
Marion Schwartz has been working with Sara Hinkley as a patient advocate for several months and has just taken over as Director of Patient Advocacy, this allows Sara to take on other responsibilities that we were not able to focus on. Marion is seeing amazing things happen as she has been invited as an advocate to participate in several cutting edge cholangiocarcinoma conferences. You will see her report in the upcoming edition of the newsletter which we hope will be out in the next couple of weeks.
We are preparing a new section of the website right now under “Get Involved” it is the “Volunteer Section” There we will list several opportunities to volunteer. If you don’t see something that interests you in that section, then send me an e-mail, tell me what you’d like to do, what your interests are or if you’d like to branch out and learn something new.
Every one involved with this foundation is a volunteer and we appreciate the gift that each has given whether it be time, talent or funds.
Lainy, I think sending the letters would be fine. I’d like to check with the other board members, but I don’t believe that there would be any conflict. I agree with IreneA that it will be more impactful if you also include some information about what orphan cancers are and how they are completely overlooked and under served by the NIH and NCI which is where the big money is for cancer research.
Jeff, thanks as always for ignoring your own burdens and lovingly serving those around you.
StacieAugust 21, 2008 at 2:28 pm #21482jeffgMember
Hi lainy…. No, I wasn’t taking any post as stepping on toes at all. I only do that when I’m dancing. Ha! I just wanted to keep you all informed and take the opportunity to let you know there is a lot of activity behind the scenes, and we were about to do some volunteer searching. I love all the motivation.
P.S. Got to run my son to the dentist. Sure will be glad when he gets his driver license back. Maybe he’ll slow down and keep it this time. If Not he’ll have to get a bike and pedal til his heart is content.August 21, 2008 at 1:35 pm #21481lainyMember
P.S. Kris I also have always heard that Pancreas Cancer is right there with CC.
Everyone hold on the letters, we will advise after I contact Stacie.August 21, 2008 at 1:33 pm #21480lainyMember
OMG JEff, I sure hope no one takes an offense to this as we meant in NO way to put out the feeling that no one was doing anything. It is our own frustration with the way CC is treated that got us going. I also remembered last night about the Professor who was on Oprah that just passed away (darn can’t think of his name now) although he did not expound on how we are orphans. I will contact Stacie and see what she thinks as we surely do not want to step on any toes. Everyone on the Board and founding members have done a great job getting us to where we are now. I have been the chief of many things and I know how hard it is to get to where we are. I will contact Stacie. As always you are right with us and we thank you for that!August 21, 2008 at 1:24 pm #21479wabalsMember
I would be happy to help. I am a caretaker, but also an RN with a masters, in case credentials might get her attention. Not that it helps with this disease.August 21, 2008 at 1:18 pm #21478jeffgMember
Hi Sophie,Lainy, Irenena……….. I admire your spunk and motivation of your ideas concerning ways to raise funds to help individuals and bringing awareness to the public of this relentless cancer. However, Cholangiocarcinoma as a few months ago, gained legal non-profit organizational status. We do have a Board of Directors, President, Legal, Grant writer, Patient advocate, Moderators and so on. For those who are new to the site this is a young and moving forward organization that has many plans to highten awareness all over the U.S. . In fact there is behind the scene preparation in progress as we speak, to launch a Volunteer Program to assist with the many projects that are being put in place. As indiviuals we can write letters, donate to who we want, and so on. However as a Non-Profit Licensed Organization, there are certain legal responsibilities and procedures involved. I personally feel individual personalized letters are great and certainly if you would like to mention you are a member of this Organization, that surely is not a problem either, but a coordinated effort with a professional presentation and promotion from a now recognized Non-profit Organization, will have a greater impact for all members for sure. Both can take place. Like I said this is a young Organization just begining to make an impact for all. Please look at the above menu under Foundation and you’ll see the begining of who is who within the organixation. Although the building of this site itself is very time comsuming, the actual structure and members of the foundation is alive and working for us as we speak. We have individuals attending all the conferences and symposiums that has anything to do with Cholangiocarcinoma, Oncology Conventions, alternative therapy,etc. and making our organization well known. In other words we have and are continuing to place this Foundation on the map to be recognized and heard.
I guess as a Moderator, it would be remiss if I didn’t bring all this to your attention. Above under Foundation there is a drop down menu. On it is a tab “Contact US” click on that and you will be provided a direct link to the Executive Director, Stacie Lindsey. I would encourage you all to email her directly and say, I have some Ideas and HOW CAN I VOLUNTEER? I’m not sure if a Volunteer Coodinator has been appoint yet, but we are looking for volunteers. For instance, this site is coming together slowly but perfectly, being refine as it goes. A volunteer is doing this, which takes time.
Once again, I admire your motivation and I’m with you all the way. Currently, I’m volunteering as a Moderator, patient advocate as needed and participant in the EFT study Program and I’m open to attending and supporting any fund raising functions as well. Please do—-contact Stacie Lindsey and let her know your valuable skills are just awaiting to be used. I’m sure she has a list of things to be accomplished ,if she just had some skilled or semi-skilled volunteers to do and or coordinate specific tasks.
Go get-em tigers!
P.S. go get-em tigers ? where did that come from? You guys got me all excited.August 21, 2008 at 12:16 pm #21477lisaMember
Nice letter, Sophie. I’ll write one myself. I have stayed fairly healthy throughout this thing, but I haven’t had any investigational treatment options presented to me. I feel like a red-headed step-child. Its hard to advocate for myself, because I’m still working and trying to keep up with the kids and the house and the job. I have little time and less energy to research treatments or diets or anything that could help prolong my life. It’s so hard when I think of what will happen to my kids when I’m gone. I still have my parents. They live close and have been very involved with the children their whole lives. But they won’t last forever.
~ LisaAugust 21, 2008 at 7:27 am #21476devoncatMember
Are you sure about the pancreatic statistics? I think it is the reverse.
Great letter though.
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