Cholangiocarcinoma lack of info
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Hi,
I’ve been on the board for almost 3 years. And, it was overwhelming at first. This is such a rare disease and even the doctors sometimes don’t have enough info. I love communicating with people, but so far have not joined the CC FB page. I guess from “normal life” I’m used to FB , but for what I needed , being able to search for treatments and stories that gave me a way forward and taught me the types of questions to ask made all the difference. Getting on the FB list is on my to do list, but life and free time have gotten in the way so far. Yes, I did spend HOURS researching here. However, I believe my mother is alive today because of this board. I’d have to go back through notes to see which exact post it was, but one of Gavin’s posts discussed a study where after one treatment, they went after the tumor again to kill it (Obviously I’m not a medical professional). I brought it to Mom’s ONC and IR and said that although we were stable, shouldn’t we be trying to kill it while we can? Good news is that it’s now been a couple of years, so I would have to look up the study I referenced. I know the CC.org folks are doing everything in their power to make this board easier to use and less time intensive. If the FB members can steer people to share their stories and knowledge of what they’ve learned here as well so all can benefit, it would be appreciated. It is a rare disease, but I think it we communicated more, it could save lives.
love and hugs,
CatherineThe long reads meant a lot to me and I learned so much.
There is no black and white/ cut and dry so the stories are the way.
I also use Google to do some of the legwork.I also use Google to search this site when I’ve exhausted the Search button above. Just go to Google.com (or the Address bar in Chrome) and fill out the search box like this:
site:cholangiocarcinoma.org fgfr
Which results in:
https://www.google.com/search?q=site%3Acholangiocarcinoma.org+fgfr&oq=site%3Acholangiocarcinoma.org+fgfrHelpForMom…..We try our best to inform all with the newest information available. The most important information comes from patients and caregivers as they provide the real life experiences no one else can duplicate. On the plus side, we have a volume of information (going back 11 years.) The downside of course is trying to read through it.
I wish we could find an easier way for this message board.
Hugs
MarionLainy wrote:Hi Brigitte. There are so many questions that go unanswered because of the rarity of this cancer but strides are being made. You may try our research engine at the top and type in a word or 2 that pertain to your situation and scan over the posts that appear. By reading the posts, questions could pop up in your mind about subjects you have not thought about. Have you also tried another ONC for a 2nd opinion?I agree with the search feature. Some things take a long time to read through especially if there are a lot of results, but in this case its a lot of learning on the way.
Hi Brigitte. There are so many questions that go unanswered because of the rarity of this cancer but strides are being made. You may try our research engine at the top and type in a word or 2 that pertain to your situation and scan over the posts that appear. By reading the posts, questions could pop up in your mind about subjects you have not thought about. Have you also tried another ONC for a 2nd opinion?
Im on the FB group too. Just joined recently.
I recommend this site when I can and have spent HOURS here- and what amounts to days scouring the internet reading studies and personal accounts of patients and caregivers.
List your questions in one place.
List your questions here and we can help. Make sure to ask your onc at the next appt.
My moms onc said “are you medical?” at our consult I knew so much… not sure he liked it but I dont care. I knew what was what and it was helpful for mom to have me there to know what to ask and remember the answers.
Who are you seeing in Houston/where are you being cared for?-Meg
I follow the Facebook page of CC and it surprises me on how any patients/family seem to lack ,proper support/knowledge from their doctor with this disease. I know as a patient I am responsible to ask and be a part of my treatment which up to now I have not ask enough questions but I intend to do next time I see my oncologist. I pretty much let him decide what should be done not knowing a lot about this disease. Any advice?
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