Althouse: Is there a cholangiocarcinoma researcher out there....

July 27, 2011

Is there a cholangiocarcinoma researcher out there....

... looking for an object of study?

30 comments:

edutcher said...: No, but I'll bet The Blonde could explain what's happening and if there's anything to be done.

PS Think you mean "Is there", not "Is the".; 7/27/11, 10:16 AM
Fred4Pres said...: I am sorry that guy is in that situation. It sucks to have a rare form of cancer that no one studies.; 7/27/11, 10:35 AM
Scott M said...: I'll echo the first commenter on that blog. By inoperable, does he mean that a liver transplant wouldn't work?; 7/27/11, 10:35 AM
Ann Althouse said...: Many commenters here know Randy, who is a longtime commenter, often posting as Internet Ronin.; 7/27/11, 10:38 AM
Ann Althouse said...: "By inoperable, does he mean that a liver transplant wouldn't work?"

In the comments at the link, he answers that question. The answer is no, I won't work.; 7/27/11, 10:39 AM
Known Unknown said...: If you fix the headline, you may get more comments.

WV: Recula — Marquis De Sade as a vampire.; 7/27/11, 10:39 AM
Phil 314 said...: I would hope that before he leaps to "the latest trial" and/or "the leading expect in cholangiocarcinoma" he's had good consultation with a local oncologist.; 7/27/11, 10:42 AM
The Dude said...: This comment has been removed by the author.; 7/27/11, 10:47 AM
Anonymous said...: Thank you so much for posting this, Ann. Very kind of you to do this.; 7/27/11, 10:48 AM
KCFleming said...: Randy, please see my e-mail.; 7/27/11, 10:54 AM
Carrie Ann said...: I just sent him a note with the following link:

http://www.cholangiocarcinoma.org/majorcancercenters.htm; 7/27/11, 11:02 AM
edutcher said...: I asked The Blonde and he needs to be careful it doesn't spread to his pancreas.

Her words, "Don't let them open him up or it will spread".

Randy, The Blonde's my wife and she's a nurse with 43 years experience, including 5 in oncology.

Good luck, my friend.; 7/27/11, 11:05 AM
bagoh20 said...: Amba12 over there is posting quotes that indicate transplant may be possible. I hope so. It's a miracle procedure.; 7/27/11, 11:05 AM
Ann Althouse said...: "If you fix the headline..."

Sorry. Fixed.; 7/27/11, 11:23 AM
bagoh20 said...: Here is the problem with rare disease: Nobody is sure what works best. I have no idea what is best here, but I have a bias toward action when it comes to cancer. I've been fighting it for 10 years, I need to fight, even if it didn't help, but I'm no doctor, just an example of their good work. I'm a believer in modern medicine of the scientific proven variety. I'm able to write this today solely because of it.

Good luck Randy.; 7/27/11, 11:27 AM
MadisonMan said...: My best wishes to Randy. My brother-in-law is fighting cancer (to a standstill at the moment...Yay!) and I hope the best for you Randy.

I hope someone gives you a link to someone who is just what you need.; 7/27/11, 11:27 AM
Robert said...: I assume he's icteric (jaundiced). If a stent can be placed, via retrograde endoscopy, transdermally, or even surgically, bilirubin level will drop and he'll at least feel better. Look better in the mirror, too.

Start by working the problem. Trying to get on a long transplant list for a disease that doesn't give him that wait time isn't working the problem.; 7/27/11, 12:03 PM
David said...: When I was first diagnosed with leukemia, it was believed that I had a variety for which there was no treatment.

I told this to my children. My young adult youngest daughter said, in essence, "Well, that's ok Dad, we'll just hire someone to find a treatment for your disease. We will all help with the money."

I had to explain to her that it did not work that way, but her idea remains the sweetest reassurance attempt of that entire time.

I did go for a second opinion.

Luckily, with the help of a outstanding diagnostic team at University of Chicago hospital, it was determined that I had a different very rare type of the disease, that was hard to detect in my case but treatable.

The treatment has gone well, and I am in good health.

I wish Randy-Ronin similar good luck.; 7/27/11, 12:12 PM
Michael K said...: Transplants have been tried but, as with liver cell cancer (grows faster and doesn't involve the ducts), the transplant requires immunosuppresion and that tends to let microscopic metastases escape from the body's own immune control.

Most research on this tumor is theoretical, not practical. That's a bad sign. Here's one that has a large series. This isn't as rare as assumed but the treatment is tough because it occurs in the ducts which can't be removed.

Gastroenterology Research and Practice. 2012;2012:190708. Epub 2011 Jun 8.

Combination of conservative and interventional therapy strategies for intra- and
extrahepatic cholangiocellular carcinoma: a retrospective survival analysis.

Knüppel M, Kubicka S, Vogel A, Malek NP, Schneider M, Papendorf F, Greten T,
Wedemeyer J, Schneider A.

Departement of Anesthesiology and Intensive Care Medicine, Hannover Medical
School, 30625 Hannover, Germany.

Background. Due to the predominantly advanced stage at the time of diagnosis treatment of cholangiocarcinoma is difficult. Apart from surgical resection, interventional treatment strategies are increasingly used in advanced stage tumours. The aim of the study was a retrospective comparison of the effect of the various forms of treatment on morbidity and mortality.

Method. A total of 195 patients, received either chemotherapy or a combination of photodynamic therapy (PDT) or transarterial chemoembolization (TACE) and chemotherapy. Results. The median survival rate for all patients was 15.6 months, 50.8% were still alive 1 year after diagnosis. Patients, who had previously undergone surgery, survived
17.1 months longer than those without surgical treatment (P < .01). Chemotherapy prolonged the survival by 9.2 months (P = .47). Palliative patients under combination of chemotherapy and PDT survived on average 1.8 months longer (P =
.28), with chemotherapy and TACE 9.8 months longer (P = .04) compared to chemotherapy alone. Conclusions. It appears that surgical treatment and
chemotherapy combined with PDT or TACE may prolong survival.

Good luck.; 7/27/11, 12:12 PM
Fred4Pres said...: Randy, I am sorry for your illness. I hope you find that researcher. And I know it is a long shot, but I hope and pray you find a miracle on this.; 7/27/11, 12:15 PM
David said...: My doc is Andy Artz at U. of Chicago. He's so young I thought I was being treated by Doogie Howser. But he's great. He's a specialist, but knows who the other specialists are. Maybe he could help.; 7/27/11, 12:17 PM
Irene said...: Randy, I wish you all the best in this fight.

Don't let the cancer "become part" of you. Treat it like something on the outside that you are battling. It sounds wacky, but this is the advice my father-in-law gave me. He was diagnosed, at age 78, with Stage IV melanoma. The cancer had spread to his liver and lungs, and he was told he had four to six months to live. That was five years ago.

When I learned about my cancer diagnosis, in October 2008, I was told that I have about a 23% chance to survive more than two years. I listened to my father-in-law's advice, and I always thought about the cancer as something outside of me. I never thought of myself as a "cancer patient" or as someone who "had cancer." I was battling cancer.

Find treatment at a place, like UW-Madison, that is a large teaching hospital with a recognized cancer center. Avoid places that advertise on TV and that boast about how compassionate they are.; 7/27/11, 12:49 PM
Triangle Man said...: I passed the information to a UW researcher who has emailed Randy.; 7/27/11, 1:28 PM
reader_iam said...: Althouse: Just outstanding, your picking up on this, and it counts a lot, in my book.; 7/27/11, 1:37 PM
Alice Aforethought said...: clinicaltrials.gov lists 107 clinical trials for cholangiocarcinoma, some of which are in the recruiting phase.

I don't know much about it, but my friend's wife died at 35 years with undiagnosed cholangiocarcinoma.

The general advice for rare cancers is to go the the major research centers, like Mayo, MD Anderson, UCSF, Mass General, etc.; 7/27/11, 2:37 PM
Known Unknown said...: If you fix the headline, you may get more comments.

I was right!

Also, Randy — I wish you all the luck in finding information and/or attention that can help. I wish I had some to pass along.; 7/27/11, 3:10 PM
Anonymous said...: Again, thanks to everyone for for your good thoughts and suggestions.

Irene: I'm definitely going to follow your lead. Sounds like good advice to me. Thanks!; 7/27/11, 6:28 PM
Irene said...: Randy, excellent!

I think it works.

I also will keep you in my thoughts.; 7/27/11, 7:05 PM
Michael K said...: "He was diagnosed, at age 78, with Stage IV melanoma. The cancer had spread to his liver and lungs, and he was told he had four to six months to live. That was five years ago."

Melanoma is a whole different situation. It has bizarre behavior and I have quite a few melanoma stories. I treated a lot of them including a pretty good friend. It can go away for 16 years and come back. Every medical student has heard the case of the patient with a big liver and a glass eye. The punch line is the patient had a melanoma of the iris of the eye 50 years ago.; 7/27/11, 7:07 PM
Tibore said...: Oh God... Randy, I don't have anything substantive to add, since the cancers I have family and personal experience with are far different (leimyosarcoma). But I do extend a hope that you find good treatment for it. I wish you the best success in fighting it.

Damn it... I hate reading about people becoming inflicted with cancer. Nobody deserves it, yet in nature, "deserves" has got zero to do with catching it (excluding lung cancer from smoking). Just makes me mad to read about someone potentially suffering from it, even though there's zip I can do about it.; 7/28/11, 9:13 AM