Topic: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Overall survival peri-hilar cholangiocarcinoma: R1 resection with curative intent compared to primary endoscopic therapy.

http://onlinelibrary.wiley.com/doi/10.1 … 67A.d02t02

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.

Re: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Looking at this data, seems like its saying without surgery , average survival was only 5 months.  With chemo and radiation.

With surgery, then following with chemo and radiation, lengthens survival to 18 months. 

I have issues identifying with this study. Having no chemo nor radiation, I am now about to hit the 3 year mark. I would have loved for them to add to this study , those who did not take the chemo nor radiation. 

It really does seem that we are a rare breed.  Perhaps it is the area where I live, rural, where not one Dr. felt it was a real need, was only told there was no evidence that it would prevent the recurrance.

If one reads these forums enough, you would perhaps notice that most who do the chemo, after the surgery, are the very ones with the highest reccurance.  I just do not know what to think .

Re: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Hi Jill and early Congratulations on hitting 3 years. What you say is true and the very reason why we tell people not to listen to statistics! You are a great example. Unfortunately because of it's rarity it is all we have to measure anything by for CC. When Teddy had his Whipple 6 years ago the Doctors, 5 of them, all concurred that Chemo/Radiation would not help him and they were right about his case. He made it to 5 1/2 years! When we went for a visit to Milwaukee a year ago to say "goodbye" to friends and family, it was very important to Teddy to say thank you to his surgeon. Dr. Henry replied with, "Sal (he always called him Sal) I never thought you would make it past a year." I guess the best way to live with CC is to just take it a day at a time!
Jill, stay strong and you are awesome!

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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Jill.....this is one study conducted with 69 patients.  We would need studies with 1000 times as many patients in order to have a more accurate result. And than this very same study, taking in another part of the world may still differ from another.   Studies are just that

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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Thanks Ladies.

But we need statistical analysis.  Collection, examination, summarization, manipulation and interpretation of quantitative data provide underling causes, patterns, trends, etc.

Marions, don't take this the wrong way, but, this sounds like some government run mumbo jumbo.  It would be simple enough to poll the members here with such choices as:

did you  or you loved one, have chemo following surgery....Yes, or NO
Date of Surgery,
Date of Death, or
Length of Survival thus far.

Maybe I am too simple minded....

Re: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Hello Just_Jill and Lainy,
I agree that a much bigger sample size is needed. I also believe that qualitative research needs to be completed on CC.
I hope I am way above average  for survival with this cancer.
Johanna

Re: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Well, for some reason I believe that everyone on this Board is way above average in every way possible! smile:)   Sorry couldn't resist.

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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Hi,
I agreed with your suggestion;I did submit  for  a similar request for the population of cc patients here a while ago. I think the board still consider about whether we have enough manpower to do the survey that I suggested  or it may not be a survey that are looking for and the legal aspects of the survey.(my is a bit longer,about  2pages long).

Yours seems to be much easier to do.

My personal thought about CC is that,even 2 patients have the same time frame,same diagnosis,same size of the CC, same location,same treatment, same caretaker etc. the outcome for each of the patient will be still different. I do not know why I have that kind of intuition but even so,it will not hampered my research on CC.
I know one thing for sure,if I try my best I will have no regret.

God bless.
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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Percy, you are the best! Just out of curiosity could we not do our own survey, just to see what we come up with on our Board? I am always curious and most definitely tenacious! It seems to me that we have more cases East and West Coast for instance, then midwest. I would like to know:
Who served in Korea and Viet Nam
What state/country someone grew up in.
What kind of treatment surgery, Cyber Knife, Chemo Radiation........
How long they had CC.
It also seems like we have quite a few Asians but hardly any AfroAmericans.
The list could go on and on. I am always curious. Just wanted to know what you thought about doing this?

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.

10 (edited by marions Tue, 16 Aug 2011 12:19:19)

Re: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Hi all,
collecting the ongoing data on this site had been contemplated by us for quite some time.  In fact my son who happens to be an Epidemiologist had prepared a questionnaire several years ago however; we simply have not had the manpower to compile the survey.  Percy, you provided us with another, more extensive questionnaire which could set the guidelines for us. 
However, we are presented with some obstacles.
At present the bulk of information is presented by previous members and retaining the updated, correct, information may be difficult at best.  Additionally we would have to include a consent form in order to release The Cholangiocarcinoma Foundation from any liability.  A Statistician would need to analyze past data in order to provide the projections and this person would have to volunteer his/her time.  (We are a volunteer organization.)
But, in the past we have had the ability to overcome major obstacles  and I don

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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Hi,All
I always think that whoever and what ever our members contribute to this web site,including  the names of,the messages they put on this web site and the discussions they have with each other on this web site  and their sugestions and personal info such as age,gender,stage of cancer etc. for all the past,current and future members will be the property of the cholangiocarcinoma once members post their info. on this web site.

I am not a lawyer,but a 2nd opinion on the" legal matter question" may be needed to clarify "Is all the info. provided by our willingly members are the property of the CC web site? ";or can the web site put a notice out saying that once you sign on to this web site, all the info. will become the property of the cholangiocarnona foundation and does not need any consent to use the info that submited by members.And for the past and present members who already here ,this web site can post a notice for our members to agree or disagree the disclosure policy and if they agree  ,then  we can start a small request like Just-jill or Lainy suggested or do some findings of our  current members who have cc. If some don't ,then we just omit them in our research in the future.
I thing it is fun and useful to know our members more.After all we are a special family. But most if not all ,it may provide info. that may help all of us in the long run.
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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Great thought, Percy.  Our president, Sara, and our board member Demitrious both, are attorneys and they would be able to handle the legal matters for us. 
In addition to working in my husband's law office and my past and present work as an advocate, I have been part of numerous discussions with the NCI and other Medical/Scientific Institutions re: ramifications of use of proprietary data though, I strongly believe solving this issue will be the lesser of our problems.
The major obstacles present the collection of accurate data from our past members which as I had mentioned presents the bulk of information. 
We could however, start the process as soon as possible but in this case it will take some time (year or years) until we have a significant cross section of information available to us. 
What do you think?  A board phone conference is scheduled for this week and I would like to present everyone

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

13 (edited by PCL1029 Tue, 16 Aug 2011 15:13:31)

Re: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Hi,Marion,
We can start simple,we had 1600+ members; we can start with the current members who are caretaker or patients themselves or we can set a time frame(ie: only for patients who had cc in the past 5 years etc.).
If we can give funding to help research on cc,we can hire 2 college students major  in statistic or med students for a summer or winter break job to go thru each entry and fill in the banks or itemize of the info we needed provided by your son(the epidemiologist).The reason for 2 students instead of one is for cross references.
Our members may just want to know each other better and may not need in details survey  info.like the one I suggested a while ago for the purpose of research.
On the same note,if you can please let the board members in the phone conference know that my suggestions about the up date of the topics  changing in the forum of research on this site  to see what they think.

If I may suggest,if we can   

1. Expand "chemotherapy" on that experience forum ,put it first on the list as "Systemic treatment options "---chemo therapy ,molecularly Tagareted therapy,immunological therapy and others " to reflect the current progress of treatment plans available.

2.Move the Radiation to 2nd place on the forum  to reflect the importance of it and change the entry to "Radiation Treatments and options" to reflect Radiation is a viable and important treatment option for CC.

3. Combine "resection and transplant"and change to"Surgery,Resection and Transplant Treatment options" into one entry  and put it as #3 on the list because all use  the surgical technique as the means to achieve their goal.

4. Change the "side effects" to "Adverse Reactions and Side Effects" to reflect other problems that is not related to medications only(ie: stents dislocation; problems caused by disease state. eg. ascites  and infections etc.)

4. Change  the "alternative treatment" to "complementary and alternative treatment-CAM" to reflect the up to-date  usage for discussion of the topic.

5.Create a new entry like"  Bits and Pieces of Information "to share and update  about cholangiocarcinoma." ---  a few lines  of information( small entries) that we can enter and share without long entry after research.
Thanks for listening.
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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Got it, Percy.  I will pass this on.
Thanks a million,
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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Marion...I am curios do we have anyone in our "family" who has been cancer free 5 years (isn't that the majic number)? I don't mean survived or lived with CC for that time, but actually cancer free.
Lots of prayers for all in the fight-Cathy

Re: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Cathy.....absolutely there are numerous CC survivors out there.
I have encountered numerous, cancer free, CC patients who had received a diagnoses anywhere from 5 to 10 years ago. 
We have to remember that these people don

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: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Just_Jill wrote:

Thanks Ladies.

But we need statistical analysis.  Collection, examination, summarization, manipulation and interpretation of quantitative data provide underling causes, patterns, trends, etc.

Marions, don't take this the wrong way, but, this sounds like some government run mumbo jumbo.  It would be simple enough to poll the members here with such choices as:

did you  or you loved one, have chemo following surgery....Yes, or NO
Date of Surgery,
Date of Death, or
Length of Survival thus far.

Maybe I am too simple minded....

Jill,
This is pretty much what the BILCAP trial is measuring.  It takes time but it has been collecting participants for a good few years now.  Doctors hope it will show the benefit or otherwise of chemo following surgery. 
Kate

Re: Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Thanks Kate, for reminding us of the BILCAP trial. Will you keep us posted on this (if possible?)

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