How did you find this site?
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Hope that your relay goes well Kris, good luck with that! And hope that you find the leaflets as well!
I have some somewhere, but not sure where they ended up. So I have to look for them. I know I had a bunch for relay for life last year. My relay is next Saturday, so I need to find them again.
Lisa, If you get in touch with Stacie then I’m sure that she would be happy to send you some to hand out at the Cleveland Clinic, and anywhere else of course that you think could do with having some of them!
Gavin
Kris and Lisa, do you both have any of the leaflets to hand out at the Fox Chase and Cleveland Clinic?
Hi Duke,
I found this site after diagnosis while googling Cholangiocarcinoma. I have now shared the link to this site with my oncologist, his PA, my radiologist and surgeon. I also shared it with Scott Hamilton’s 4th Angel Program. I am hoping to get some generic business cards from CCF to give to The Cleveland Clinic so that they could give them to new patients.
LisaI found it through Google as well. But, to be honest, I was given my diagnosis over the phone by a horrible man associated with Drexel University Hospital. I looked it up immediately so I knew what questions to ask… Found cc.org AFTER I found that horrible page that said 93% of those diagnosed were dead within 2 years. That was over 3 years ago. So I don’t believe that page anymore!!
When at MSKCC in NY I left pamphlets almost every time I went. Talked to Dr. Ks staff about cc.org, along with any cc patients I met. I still tell everyone at Fox Chase about cc.org, but I do have to admit I don’t leave pamphlets. I will on Tuesday, if I remember to find them!
I will also ask Dr. D and the nurses in CRU if they ever mention this site to their cc patients.Did a Google Search as soon as we got a diagnosis. Didn’t know anything about it before and apparently not a lot of people do. We gotta get the word out, and get some support for research.
Duke….I can always count on your explicit questions. Love it.
Why some physicians in major institutions have not heard of us puzzles me as well. After all, our robust medical advisory board is comprised of physicians practicing in these cancer centers. Go figure.http://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/medical-advisory-committee/
There are three distinct areas within the Medical Advisory Board:
Chair, Medical Advisory Board:
Ghassan K. Abou-Alfa, MD,
Co-Chair to be announcedClinical Advisory Board
Chair, Alan P. Venook, MD
Vice Chair, Milind Javle, MDScientific Advisory Board
Chair, Nabeel Bardeesy, PhD
Co-Chair to be announcedWe are listed as resource on the NCI website.
ASCO highlights our research grants provided via the ASCO Foundation i.e. Conquer Cancer.
Although I have officially resigned, but still active until replaced, I am one of two research advocates in the NCI Cooperative Group Program focused on designing Phase II/III clinical trial for our cancer and that of liver cancer. (HCC – Hepatocellular carcinoma (HCC) and CCA – Cholangiocarcinoma)
Our site is visited 5 thousand times per week.
In spite of the continuous outreach via the web (google in particular) conference attendances and mass mailings, many do not yet know of us. This includes GP’s, GI physicians, Oncologists, Radiologists, Surgeons, etc. Due to our limited funding, we are trying to obtain educational grants to cover the cost of outreach to the above mentioned physicians, but it is a slow process and we are learning to not cry when we are denied our request.
And, this is where you come in. This site offers numerous, printable information you may take to your physician. Forward to us the name and address of your treating physician (ask for permission) and we will mail brochures, etc. for display.
Numerous changes are still in the works. Please take a look at our updated website.
http://cholangiocarcinoma.org/ We continue to build the information as time goes on. It is a never ending endeavor, but then that is true for this cancer as well. We will retire when the cancer has been conquered.Please know that we always want to hear from our members. After all, this is a website made for you. Who better than you sharing thoughts and ideas for us to implement?
Hugs,
MarionI too distributed pamphlets and other info to several doctors, hospitals, clinics etc. but don’t know where it went from there. As Lainy said, if they don’t or won’t use them or pass on the info to those who need it I too am at a loss. All we can do is keep trying to get out the word to those in need.
Duke…..the one thing my Mayo onc did say to me….was that he was glad to see how informed I was about CC, treatment and my own particular situation. In his approximate words, “You can make an informed decision about your treatment.” I think the oncs out there , at least at the big medical/cancer centers, would mostly welcome a website like the CC foundation site if they actually knew about it and understood what it is. I’ve been to a couple other sites that talk a lot about bogus cures and I suppose that they make it more difficult for oncs to take “us” more seriously…we get lumped all together. At least that what I would suspect.
Is there any way to go through ASCO? I see they just held an annual meeting. I would think the Foundation would have enough horsepower to either get on the agenda or propose a topic – “Supporting/Educating the Patient” sounds about right. Clearly, this would extend beyond CC, but at least it would give us additional exposure.
ASCO must have a newsletter. They are always looking for short articles.
Or, we the patients and caregivers, should just take it on ourselves to make our onc’s aware of this site and the value it provides. Subtlety was never my strength.
Duke
Duke, wish we could come up with a plan! As I mentioned above I did try but don’t know what else can be done. We can leave brochures, talk to the powers that be BUT if they don’t or won’t use us I just am at a loss.
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