Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)
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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.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
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.
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
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.
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/NEJMoa0908721#t=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.
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
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