July 27, 2006 at 4:57 pm #195stacieMember
Easier, better and more efficient – that’s the dream for this website. We want each person who comes to this website to find what they need and find it quickly.
Those who need to talk with someone (support group) can find that on the “live chat”. Those who just got a diagnosis can go to a particular spot for them – where they can get the most critical information they need first and then they can start to digest all of the other information available on the website and elsewhere. Those who are looking to switch treatments can find all the possibilities here and can go armed and ready to discuss the options with their oncologist.
I think you all understand what we are trying to say. So, here are some of the things we need. First we need some input. I’m trying to think back on the things that were frustrating to me when we first got this diagnosis –
I didn’t understand the terms and simply could not understand the articles I was reading – so I think we need a dictionary of pertinent terms (i.e. hepatic, apoptosis, hilar, etc.).
I did’nt know where to look for articles on cholangiocarcinoma, pertinent chemotherapy or treatments. So we need an area that has a link to every possible website that someone might look at for additional information.
We needed a chemo spreadsheet that would explain all the different kinds of chemos and give direct links to the websites so you could immediately get the information you needed. The McCrea family provided that in expert fashion.
We need full explanations and all possible articles on alternative treatments. This is an area in which we are very weak.
We need an area that focuses on all the interventional radiology options, that helps you know if you are a candidate for chemo-embolization or not, if photo-dynamic therapy works with your kind of cholangio or not. My brother-in-law is an interventional radiologist and has been helping me with this.
Now, this information should not be the definitive answer to your treatment, but it should give you enough information so that you can understand what your oncologist is talking about, it should give you enough information to know and understand all your options and it should give you enough information that your oncologist knows that you are going after this.
There are many other areas in which the information could be better organized, gathered and arranged. If you are researching one, many or all of these kinds of things (above), we really could use your help. Whatever you are finding out will be helpful to others. So send us the information you find so that we can post it in the appropriate area on the website.
Also, I would love it if someone would like to take charge of the dictionary of terms. I have a long list of terms and they could work on and as new things turn up we’ll add them as well. I would also love to share the chemo list updating with someone. Each time a new chemo (in our area – hepatobiliary, liver, pancreatic, colon, etc.) comes to light and there is some data behind it, it needs to be added to the chemo list with all the pertinent information. There are several other things, that won’t take much time, but could be available much quicker if we could have a little help.
There are many needs and we want this site to be as comprehensive as possible. What are the things that you needed immediately when you found out you had cholangio, which were the links that were most helpful to you? All of these will help newer patients and we want to make sure they are posted here.
Alright, this has been a long email so I’m going to sum it up. Anything, you find can be sent to either Rick or Stacie. If you want to help with the website just send me (Stacie) an email.
Again, thanks to all who are participating. Thanks to all who respond to those who post.
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