Topic: Looking for answers

I (and I suspect a lot of others) come to this forum looking for solutions. The large majority of the posts however, give no background regarding treatment, disease background, etc.  As a result it is impossible to derive much from this.
Most of the posts go something like "I just got back from the doctor and I am stable" or "My NIH trial is really going well". Needless to say this doesn't help a desperate person searching for answers.

I'm not sure what can be done to improve this but maybe the moderators could draw out some pertinent information so we can benefit from these successes.  Identify which trial, what form of disease, the therapy that worked, and so forth. I am personally one year into chemo (8 cycles of Gem+Cis; 6 weeks of holiday; 10 or 11 Gem + carb) and that is starting to not work.  I am looking around at trials but would like to get into one that offers some expectation of success. Without some sort of experience confirmation this is not possible as the results are not posted until after the trial is complete.

2 (edited by PCL1029 Tue, 10 Sep 2013 14:45:43)

Re: Looking for answers

Hi,Walt,

You are not alone with regard to retrieve information to help to monitor or look for solutions for treatment further done the road.
I am one of the patient of this disease for 54 months and one of the moderator the foundation ask me to volunteer for.
I did put up a fair amount  of  past and current medical and cancer related topics and some of the most recent development about treating this disease. The problem lies on, unless you keep an eye on this message board everyday to read the "UPDATED",marked by the orange yellow indicators on the sections of related message board. If not,After 2-3 days, the old messages will be moved downward by new message which people who commented on that subject and the original message will be out of sight .
This is a problem I noticed long time ago,; the only solution is to treat some common and useful messages as a "sticky note" and it will always appear at the top of the discussion forum. So far there is only one such sticky note by our founder Stacie on one of the message forum.
Even I have difficulty sometimes to find my own messages or other people's messagea date or two after I research and find out the answer and try to reponse to that message.(ie:after I read about a new patient's message request,  like I am new and what steps should I take next; or what  have you heard about immunolotherapy ,clinical trials ,targeted therapy agents ,common chemotherapy question and the trend of future treatments etc.and  some specific the patient asked for) . I put those up and revised as frequently as possible.THE REASON TO DO THIS is simple, I am a patient. the more I keep myself updated about this disease, the better chance I can survive longer and with a better quality of life and i do not mind to share with others.

The problem for other patients or caregivers is that they may not want to know about medical related messages but only emotional supports; therefore the need may not support the use of create a "sticky note" that always appear on the top or the message board forum that you want to search.

My suggestion is to try to read "the system treatment" for CCA to have a sense of past ,current and future outlook for this disease; then you can read " the treatment triangle"  about other ways to deal with this cancer; also if you are interest about scans ,"ultra sound"is the search word .

If you have intrahepatic liver tumor, you can read "my case study" or if you have extrahepatic CCA, you should read one of the best message board member called" Eli " about his research for CCA treatment for his wife.And Gavin,our speciaL moderator in Scotland too.

Just  use the  search function above(ie: next to the user list) and type in what you want to know I think that is one way for a new member who want to know about this cancer medically in general in a ONE SITTING reads it all situation.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

3 (edited by marions Tue, 10 Sep 2013 19:33:15)

Re: Looking for answers

Walt…you are very right.  We are lacking a flow sheet.  Much pertinent information is hidden in the thousands of postings, but much is difficult to access.  And, as you have mentioned, we don’t collect data on treatments and results.  Much of it will be addressed with the upcoming Data Collection we are close to finalizing. Our biggest problem is the lack of manpower.   As you may know, we basically are a volunteer organization (with a few exceptions) hence we are continuously hindered from improving our services to the patient community at large.
Ideally a flow sheet would help, but also an additional thread on the discussion board would be of benefit.  What are your thoughts?

In the meantime though; you or anyone else looking for member response should ask the questions and re-ask the questions by continuously reviving the posting.  Don't give up until you have achieved your goal. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Looking for answers

Thanks for the responses.  I think we all have the same difficulty in that this could be a full time job and I already have one of those.

I have asked for clarifying information regarding a couple of posts and people did respond with helpful info, but this isn't generally practical.  My suggestion is that the registration be modified to include some basic non-intrusive details such as type of disease and treatment course.  This info could then be appended (automatically) to any posts and allow readers to focus on the relevant posts rather than trying to guess relevance or go through searches of prior posts.  Obviously the content of this would need to be carefully thought out.

The key issue is treatment possibilities with the pluses and minuses of each. This is extremely important given that the Oncology providers have very little to work with and no one seems to know what conclusions are coming from trials. I guaranty you that my Oncologist has no idea, as he has openly expressed his limited options, and that I am about out of them.  I see this same thing throughout this forum.

I think this would be of value to researchers as well since I am not aware of any central clearing house regarding efficacy from health care providers. It seems the entire "system" (term used loosely) is running open loop and I think this is detrimental to our common goals. There was a great article in a recent Scientific American where this very problem was discussed.  I am left with the feeling that there is a certain amount of tail chasing going on. I realize that this forum has nothing to do with the system other than being a place to vent about it.

Re: Looking for answers

Walt, et al,

I have offered similar recommendations as well as my personal involvement in building a functional, practical flow sheet which guides users based on their current situation.
Presently, there are major projects within this foundation to redo the website - which could help significantly in building an information model. And there is work on building a comprehensive "CC" database for current and future patients to help identify best practice solutions, alternative treatments, based on cancer type (ICC, ECC, ...), staging, geography, and more.

Don't give up on your ideas. We are in agreement that we need to help build a better "path to solution" model than currently exists.

Take care,
Carl

Re: Looking for answers

Dear Walt and Carl, you are both right and your suggestions are really listened to however, there is that however, we are still a fairly new group with few volunteers and fewer dollars. I believe in January we will be 8 years old. If we only had the where with all we would be ecstatic! It took us up to oh, a year ago to start being looked at as a group that some well known ONC's are recommending to their new CC patients. What a caveat that is, oh my goodness, we were thrilled. Yes, top priority is a winning treatment for CC but we also need to be here for those that need support. I could NEVER have gone through my 5 years with Teddy without this Board and I just feel I had to pay it forward. Someone had started a post about a year ago where patients wrote down their DX, treatments and results. Maybe someone can help locate it. We had a pretty good response and perhaps it could be reposted. Until more people can volunteer for things what we have is certainly far better than nothing.
Carl, hello to your wife!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Looking for answers

What about a cholangiocarcinoma wiki?

It would be great to harness the power of all the members of this site. 

Using myself as an example, I would love to write up my experiences dealing with various cancer centers and reading papers etc.  It would be very motivating if there were a relatively easy way to make that a more permanent contribution.

Others I know have looked at the experiences of members posting to try and find regularities.  This would be a great contribution to a wiki page.

The other thing that is nice about a wiki is that you can contribute at your own pace.  Sometimes I feel like giving back and being very involved.  Other times, my personal situation takes over and I disengage for a while.

I am not sure about how hard it would be to set up and maintain a wiki, but with a motivated community, it can be a hugely valuable resource.

Jason

Re: Looking for answers

Keep the ideas coming.  As the website is under construction, we are ready to implement new ideas and we would love your help.  Carl, I know that you have spoken with Rick already however; I believe that we need to put in place the information first so that he then can  integrate it into the new website.
Basically we are looking to compile the information on this board in an orderly manner. It is long overdue, but as mentioned before, we have not had the manpower to move forward (nor do we have the expertise.)
And, this is where you all come in.  Therefore, dear Jason, Walt, Carl, (Eli?) Bruce? Percy, and whoever can provide constructive information please, contact me at marion.schwartz@cholangiocarcinoma.org.  We have additonal volunteers ready to jump in - together we can make it happen. 
Thanks and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Looking for answers

Hi, all,

I will defer this topic of improvement to those whose have computer programming experience to figure out the best way.
I think Walt's " My suggestion is that the registration be modified to include some basic non-intrusive details such as type of disease and treatment course.  This info could then be appended (automatically) to any posts and allow readers to focus on the relevant posts rather than trying to guess relevance or go through searches of prior posts.  Obviously the content of this would need to be carefully thought out. " is the first step to steer the one who have questions to the best and quickest locations of his/her answer.( such as patient age,the length of the disease;stages if known;extra or intra hepatic CCa or the mixed type;what type of medical info they need-- like  a general view of the disease and/or general  choices of treatments in ONE SITTING ; or sharing or looking for emotion support and sharing- the key part of this web site's original intention for establishment.
Therefore, The simplest ,I think ,is to separate into three groups When people first  join this site through "Registration". and ask them which below are the FIRST priority and therefore we can steer them first to what they need and providing subsequent links to if he/she has other topic related question.
1. information for sharing patient experience
2. blogs for emotional support and  solution
3. information for medical related and updated treatment advancement
Other improvement are needed too ,but I do not know a thing about programming Other much qualified people will provide their input to make this site truly one of the best for CCA.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Looking for answers

Percy,

Nicely worded.

Regarding your item 1.
My thoughts, expressed several weeks ago about process improvement, would be to envision a scenario for this website much like the scenario when someone visits a shopping mall (at least here in the US). Before you hit the stores, you are presented with a complete map of the mall along with a "You are here" arrow to mark your spot in this unfamiliar world (mall). No matter where you enter the mall, the signs are there - you know exactly at that point in time where you are.

Of course, once you've been there, you can ignore the signs as long as you go down a path already known. But when you want to go to a place you have not been before - you can always go to the sign to get your bearings before moving on.

That's what is missing. When I first started on this site I was at the mall the very first time and didn't even know what stores where there. Now that I have shopped around a bit, I know the stores I am familiar with, but also know there are stores that I would like to know more about because they could help me.

But that is not the only support mechanism. Your item 3 is an absolute necessity. I've been here long enough to observe every moderator try their best to summon up the most relevant technical (i.e. medical) information based on the latest question posed - no matter how many times that question was asked before. There is so much information on this board and associated links, but it is hard to find outside of the latest question posed. There is no way to get there except for these personal blogs.

I think the relevant technical information should be moved out of the blogs into their own - categorized - information tree. Then if a question is posed of the moderators, they can quickly answer with a link to an already established flow of information.

I hope you are well Percy. You continue to inspire.

Carl

Re: Looking for answers

Carl your thinking is excellent. We have been on quite a while but I am sure when newbies come on most are totally lost. The patient and the caregiver have so much on their mind all ready I am sure we appear as a jungle and they are trying to maneuver through us blindfolded. I like your analogy of a Mall even though I am NOT a shopper. Let's not loose sight that we have come a long way and I still believe we are one of a kind. We will get their.
Manpower is needed so bad. Oh my gosh I should add woman power as well!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Looking for answers

Most of the information requested will be contained in the upcoming Cholangiocarcinoma Patient Registry which we expect to launch within the next two months.  This registry will allow for fellow registrants to peruse all relevant information

When first developed, this discussion board was adequate; we had only a limited amount of entries.  However, we have grown so rapidly and steadily that we are experiencing some problems indicative of a disorganized information source.   Therefore, we have to make changes and are grateful to anyone wanting to help us along. 

We would love to implement your suggestions and ideas hence, please continue to provide us with the information needed. 

Thanks a bunch,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Looking for answers

But don't lose track of the compassionate side of this site.  Patients and caregivers, especially their first few posts, are frequently made during times of stress and anxiety.  They may not post in the Board that would best fit (in retrospect).  Sometimes threads (could/should) spin off into multiple Boards which makes it difficult to see the big picture.  And, don't forget that these Boards are getting huge which makes it difficult to see everything that's going on.  Even tracking the references that Gavin (bless his patience and thoroughness) posts is daunting.  This is where "Search" is invaluable.  And there are nuggets from several years ago that are equally important today.

It would be nice if there were a quicker way to show "My Posts".  The current method is workable but a little cumbersome.

While we are sending letters to Santa, is there a way to for each of us to add a specific personal (user-defined) tag to individual posts?  I come across gems by accident that I want to be able to find again but don't know how to use the computer to track them.

There is now a cat on my lap who is saying I've spent too much time on the computer and it's her turn now.  Since that is likely to help more with combatting CC than most things I can think of, she wins.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Looking for answers

Duke,

Great comments/questions.

What I do when I want to save a specific post for future reference is to create/add a new bookmark in my web browser. At least it allows me to go back to the pages at a later time.

Your point. Is right on. It would be nice yo just mark those pages so you can go back to your list of merged pages.

Carl

Re: Looking for answers

Hi Duke,

Carl's suggestion to you re bookmarking links or posts that you find here that you want to keep is an excellent one and one that I do as well. You could set up a CC folder on your browser and just add the links or sites that you want to keep in there for easy reference for you in the future and that way you wouldn't have to search for them again here on the site. That way the cat won't get too upset with all of your time spent searching as well!

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.