1 (edited by 2000miler Sun, 10 Mar 2013 14:08:19)

Topic: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

I have created an Excel spreadsheet containing member data extracted from posts on the Discussion Boards.  So far, I have filled in the spreadsheet for 100 patients, represented by 106 members (6 duplicates), which is about 4.6% of the database.  First posts for 72% of the patients was in 2006.  While this is just a small sample of the data, it provides some interesting results.  In some cases, the results are compared against data from  three sources,

A. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369994/

B. http://jco.ascopubs.org/content/29/23/3140.long

C. http://www.nejm.org/doi/full/10.1056/NE … articleTop

Patient Age:  Age was available for 77 of the 100 patients.  Median age was 55 and the range was 25 - 89.  This compares with B. 61 (23 - 85) and C. 63.6 (23.4 - 84.8)  This may be statistically insignificant, but it could indicate a trend toward CC showing up at younger ages.

Patient Sex:  Sex was available for 95 of the 100 patients.  The M/F ratio was 1.44.  A. has 1.50, B. 0.87, and C. 0.90.  The ratio of men to women ages 60-64 in the 2010 US census is 0.92.  Again, this may not be statistically significant, but it could indicate that CC affects men more than women.

CC Distribution:  The type of CC was identified in 51 of the 100 patients as 25 Intrahepatic, 12 Hilar, and 14 Distal.  There was 1 gallbladder, 1 mixed and 47 not recorded.  This distribution is biased toward intrahepatic since I started filling in the spreadsheet with intrahepatic cases because I was looking for cases similar to my wife's.  The percentage of intrahepatic cases should come down as more patients are added to the spreadsheet.

Resections:  there were 40 resections, 3 transplants, 48 no and failed resections, and 9 unknown in the 100 patients, giving a 47% resection percentage.  This compares with A. 40-50% intrahepatic, 30% hilar, and 40-50% distal.  Unfortunately, many members did not report the type of cc the patient had but reported no surgery, which artifically inflated the resection rates for the patients as 65% intrahepatic, 82% hilar, and 69% distal.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Wow! This must have taken quite a lot of time. To make it easier you might have started a thread asking... But I know we don't always respond. Your spreadsheet could get very involved with treatment courses and success/failure rates. The biggest problem I see is that there are an unknown amount of mutations of cc. Personally there are currently 2 different cc mutations in my body: 1 in the liver tumor and another in the lymph nodes. They do not respond to all chemos the same.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

3 (edited by 2000miler Fri, 21 Dec 2012 10:38:45)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

I thought about posting a thread asking for data, but "trying to help" beat me to it.  She posted "Patients' Questionaire" on Nov 11th and only got 5 responses.  I started off including everyone who responded to my previous posts and the top 10 posters on the spreadsheet and still 74 of the 100 on the spreadsheet haven't posted in over a year.

At this point the spreadsheet has 77 columns.  I am including data on neoadjuvant, adjuvant, & systemic treatments and data to calculate recurrence and survival probabilities.  The only mutation info that I have so far is from LindaR, whose husband's tumor was analyzed by Foundation Medicine and found to have 3 genetic mutations.  After obtaining this information, the experts decided to remain with his treatment, FOLFIRINOX, unless it proves to be ineffective.  LindaR is on my spreadsheet because she responded to one of my recent posts.  Most of the people on it are first posted in 2006, and tumor molecular analysis may not have been that popular then.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

I am very happy that you are doing this, Bruce.  The more information we have about CC, the better.   I think the genetic information is valuable but, unfortunately, most oncologists aren't very knowledgeable about it yet and the analysis often isn't covered by insurance.  (We're still waiting to see if Blue Cross will pick up the cost.)  One valuable piece of information we recieved is that my husband has an NRAS mutation that is sometimes found in intrehepatic CC but rarely in other types of CC.  (Pancreatic cancer often shows a related KRAS mutation).  A positive RAS status seems to indicate that certain types of drugs will not be effective in these paitents.  I'm currently trying to research all three mutations to identify clinical trials that might be helpful if the FOLFIRINOX fails.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Hi Bruce,
My daughter, Lauren had an oncology appt. this past Wed. at Uof M. Her doctor is doing a study on tumor analysis. Lauren is participating. She had a blood test, cheek swab, and saliva test on Wed. She will be having a liver biopsy in Jan. All of the results of this information will be studied to determine what type of chemo would be most beneficial. She is going to be off chemo until around the third week of Jan. Her oncologist said they get better tumor samples if chemo is withheld for a bit before the biopsy. We are very hopeful this will help with Lauren's treatment. Also, since this is a study, there is no cost to us for any of the tests! I would be more than willing to provide any info or answer any questions you may have. The more we find out about CC, the better. Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

6 (edited by kris00j Fri, 21 Dec 2012 18:45:43)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

I meet with my oncologist in Jan and I will be happy to find out any info I can from my biopsy of the liver tumor. The lymph nodes have not and may never be biopsied.
And I never saw "trying to help's" post. But I was on sporadically for a while.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

7 (edited by 2000miler Thu, 24 Jan 2013 12:44:34)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

So far I have death dates for 57 cc patients.  Of these I was able to determine that 22 had resection surgery and 30 did not.  The median survival was 2.27 years (0.63 yr. - 7.80 yr.) for those having resection and 0.98 year (0.02 yr - 2.78 yr.) for those who did not.

Considering that those who could not have surgery probably had more advanced cc than those who could, I looked at staging.  Seven of those who had no surgery were classified stage IV and one was classified IIIC to IV. This latter case was diagnosed in Aug. 2011, when the 7th edition of AJCC Cancer Staging Manual was in effect.  The patient had IHCC and there is no stage IIIC or IV for IHCC, only I, II, III, IVA and IVB.  The surgeon evidently staged the patient based on the 6th edition of the Staging Manual which was out of effect on 1/1/2010.

Staging was reported for three patients who had surgery.  One was stage I, one stage IIA, and one stage IV, enforcing the expected outcome that those who could not have surgery had more advanced cases of cc.

I will eventually calculate the stage for those patients who have provided the required TNM data but no stage so that the impact of surgery on advanced cc cases can be estimated.

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Bruce.....It is important to revive specific postings in order to receive responses.   
tryingtohelp's link: http://www.cholangiocarcinoma.org/punbb … 977#p67977

Good luck, you are doing a wonderful job.

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: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Based on actual death data, the median survival time after diagnosis of cholangiocarcinoma for 17 patients living outside the United States is 0.64 years (0.10 - 3.37), whereas for 33 patients living inside the United States, it is double that value, or 1.28 years (0.12 - 5.45).

The countries in my database which are included as outside the USA are Australia, Belgium, Canada, Denmark, France, Greece, India, Mexico, and the United Kingdom.

Bruce Baird

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Bruce....you are a great investigator when it comes to these 17 patients, but for any other analyses data would have to be collected and evaluated from a much larger patient population.
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

11 (edited by 2000miler Sat, 09 Mar 2013 07:56:13)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Marion - I agree that more patients will improve the statistical significance of the results I presented, but the results are still worth presenting.  Statistical significance will improve as I collect more data from the discussion boards and enter it into my spreadsheet.

50 patients were used in my analysis and were divided into two subsets, 33 from the USA and 17 not from the USA. 

For comparison, the following article, published in the American Journal of Surgery, discusses a study with 31 patients and the authors were still able to make statments about survival for subsets of the 31 patients, those with R0 resection, negative lymph nodes, a solitary tumor, a width of resection margin greater than 3 mm, and stages III and IV patients who received chemotherapy.  I don't have the complete article, but I bet some of these subsets had less than 17 patients.

http://www.ncbi.nlm.nih.gov/pubmed/15720985

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Bruce.....We have to take it for what it is: your statistical analyses represents a minute section of patients in the above mentioned countries, and it is based on postings on this site only.  By no means, is it an accurate analyzes of survival of CC in these countries.  In re: to the mentioned study published by pubmed, in order to substantiate their findings large scale studies are required.
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

13 (edited by 2000miler Fri, 22 Mar 2013 14:59:24)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

<SENSITIVE>

To date, I have compiled data for 347 members, which represents about 14.3% of this organization's membership.  Of these 347 members I have data for 251 cc patients for which I have a detection date, the date on which the patient was diagnosed with a tumor which was later identified as cc by additonal tests, pathology reports, etc.  Many members post the dates as only a month and a year, and for these I estimate the actual date as the 15th of the month.  Of these 251 patients, 146 have died (94 men and 52 women) and 105 (53 men and 52 women) are either still living or have died and I am not aware of their deaths.  In survival studies, these 105 patients are treated as right-censored failures.  They represent patients who drop out of studies.  In those studies these patients and their times within the study are included in the analyses.  In my study, I calculate these times from the last posts made by members in which the patient is still alive or from other sources such as blogs.

In order to process this data, I have downloaded the free R Statistical Program, which has a Survival Package and is used by the professionals for doing Kaplan-Meier estimates, log-rank tests, confidence intervals, Cox regression, and all the good stuff that the professionals who write the medical papers utilize.

My first try with this program was to calculate survivals for these 251 patients and compare men and women.

I used the Kaplan-Meier estimate and log-rank test, and found that the median survival time for men was 1.43 years and for women, 2.47 years.  The test had a chisq of 7.5 , 1 degree of freedom, and a p=0.00603, indicating a high confidence level that the data is significant.

The Kaplan-Meier survival curves for men and women tracked together from 100% down to about 60%, after which the men's curve continued its steep slope, while the slope of the women's curve decreased, resulting in the greater median survival.  At 30% survival, women were 1.67 years greater than men.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

hi! thanks for all this work!! i'd love to take a look, but i think you'll have to upload that file...it's pointing to your hard drive

15 (edited by 2000miler Sun, 24 Mar 2013 20:36:50)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

OK, I had to read more about getting the plot from R onto this discussion topic.
Bruce


https://sites.google.com/site/bbairdsr/ccsex3.png

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Bruce...you are amazing.  Many thanks for your tireless work.
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

17 (edited by 2000miler Thu, 28 Mar 2013 14:37:01)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

The following plot depicts survival as a function of a patient's age when his/her cholangiocarcinoma tumor is first detected.  This is from a sample of 218 patients from my Cholangiocarcinoma.org database.  The median age of this sample is 58 years and the plot contains survival data for patients who are less than 58 years old and for those who are age 58 and older.  The data had a chisq of 9.5 , 1 degree of freedom, and a p=0.00208, indicating a high confidence level that the data is significant.

Combined with the plot for survival as a function of age, it appears that younger women fare the best and older men the worse.

I also came up with a survival plot comparing patients whose tumors were detected prior to 1/1/2007 vs. those who were detected after this date, but p was much greater than 0.05, indicating I need to compile more data for that plot to be statistically significant.

Bruce

https://sites.google.com/site/bbairdsr/ccage1.png

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

18 (edited by marions Thu, 28 Mar 2013 12:31:05)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Bruce...I can't say it often enough, you are amazing.  Thanks you for all you do.
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: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Yea Bruce!  I am impressed with your statistical abilities!  Thanx for the info.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Hi Bruce,

Can you do multivariate analysis in that software?

As you know, AJCC staging systems do not include age and sex. The reason for that is simple. Medical studies upon which the staging systems are based didn't find age and sex to be independent variables that predict survival.

I'd be very curious to see the results of your multivariate analysis. I wonder if age and sex will lose their predictive power once you include resection status (resected/unresected).

Eli

21 (edited by 2000miler Thu, 25 Apr 2013 06:22:48)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Hi Eli,

The R program can do multvariate analysis, but I don't think it is within it's survival package.  The survival package is designed to combine times to actual deaths and times to when patients leave the study while still alive, referred to as right-censored data.  I have done multivariate analysis before using Lotus, but right now, I don't have a feel on how I would combine actual deaths and right-censored data within a mutivariate analysis.

I was surprised by my results, because I haven't seen any cc survival studies involving sex and age.  I did notice that the Cisplatin plus Gemcitabine versus Gemcitabine for Biliary Tract Cancer Phase III Clinical Trial balanced age and sex in their studies.  Median age for Gem was 63.2 yrs. and 63.9 yrs for GemCis.  Also, there were 108 women and 98 men for Gem, while there were 108 women and 96 men for GemCis. So it appears they were trying to negate any possible sex and age influence on the results. The survival curves shown in Fig. 2 of their paper were only separated by a few months, which was much closer than the curves I show in the two previous plots.

I have a lot more men than women in my data mostlly because about four times as many wives post about their husbands to these boards than husbands post about their wives.  Daughters and sons posts about evenly for their parents, but daughters outnumber sons in the posts by over four to one.

Somewhere in the future, I will show survival curves for more than one variable, so I could include sex, age, and resection status in one survival plot which would allow comparisons.  The problem is that as I include more variables, the sample size for each condition decreases and p increases above 0.05, so I lose statistical significance.  I correct this by compiling more data from the posts, but this is very time consuming.  Also, I spend a lot of time looking online for possible deaths of members who no longer post because the survival analyses starts to lose accuracy if too many right-adjusted data points are used.

Bruce

[4/25/13 - Eli, since I posted this I learned that the Cox Regression Model is used in survival analysis to handle the right-censored data for multivariate analyisis.  The R Survival Package includes Cox regression analysis and I will eventually use it to do the analysis you suggested.]

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

22 (edited by 2000miler Fri, 29 Mar 2013 13:58:45)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

I combined both sex and age on one survival plot, and it appears women younger than 58 years fare the best, while women 58 and older fare the worst.  The big outlier in the group is our over 10 year survivor, barb, who was 59 when she was diagnosed.  I didn't have her age for the previous age analysis, but I have since found it.  If I had broken the age groups at > 59 years instead of < 58 years, she would have been in the younger group.  Age doesn't seem to have that much impact on male survivability.

Statistics on the plotted data is chisq = 14.4, 3 degrees of freedom, p=0.00237. 

Median survivals for the groups are:
Females < 58 yrs. = 3.592 yrs.
Females >= 58 yrs. = 0.876 yrs.
Males < 58 yrs. = 1.517 yrs.
Males >= 58 yrs. = 1.418 yrs.

Bruce

https://sites.google.com/site/bbairdsr/ccsexage1.png

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Hi, Bruce,
Can you tell me how many of us( patients) on this discussion board ,based on your research data collection,had radioembolization done, their age,sex,duration between the start of treatment and final outcome, and the end point( ie:survival result)?
Thanks,
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: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Hi Percy,

So far, I have compiled data for 15% of the patients on these discussion boards and have found only 12 who have had radioembolization.  Most of the 12 did not use the term "radioembolization," but called it brachytherapy (3), Sir-spheres (5), Theraspheres (3), and spheres (1).  Based on the present 2,438 members on these boards, a rough estimate of the total would be 80.

I might have missed some of the treatments, especially if they were done well after a patient was dx with cc and especially if the member had many posts.

The breakdown of the patients who had radioembolization is as follows:

Brachytherapy:
M, 46, Transplant, still alive at last post, 4.38 years after dx
M, 58, No surgery, lived 5.41 years after dx
F, 66, Transplant, still alive at last post, 1.49 years aftr dx

Sir-spheres:
F, 45, No surgery, lived 1.51 years after dx
F, 58, No surgery, lived 3.21 years after dx
F, 51, No surgery, lived 0.95 years after dx
F, 56, No surgery, lived 2.47 years after dx
M, 67, Resection, lived 7.64 years after dx

Theraspheres:
M, 77, No surgery, lived 0.73 years after dx
F, 25, No surgery, still alive at last post, 1.56 years after dx
F, ?, Transplant, still alive at last post, 1.24 years after dx

Spheres:
M, 60, No surgery, lived 2.31 years after dx.

I don't have any data on duration between start of treatment & final outcome.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

25 (edited by 2000miler Sat, 30 Mar 2013 18:13:30)

Re: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)

Eli - I calculated the percentage of surgeries for the four cases shown in the plot above and found that it could have considerable impact, but it is not the only factor.

The percent of patients who underwent surgeries is as follows.  The percentage is calculated from a subset of the above data used in the above plot since I did not have surgery data on all the patients used in that plot.

1. F  <  58:  52.2%
2. F >= 58:  41.9%
3. M >= 58:  37.7%
4. M  <  58:  36.6%

So, the 52.2% for women < 58 years could be a major factor in them having the longest survivability.  However, women >= 58 have the second highest percentage of surgeries, but have the lowest survivability, so that confuses the issue.  Men had about the same percentage of surgeries and had about the same survivability, so that appears to be reasonable.

This raises the question, why do women have a higher percentage of surgeries than men?

I would create another plot for 8 variables where I would take sex, age, and surgery into account, but the result would be some ragged lines since I don't have enough death data, especially for women who have had surgery.  I'm going to have to compile some more data from the posts before I'm ready to do that.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.