Drug cost is significantly less in other countries.  Physicians and Medical Institutions are fighting back; so can you.

http://www.cancerletter.com/articles/20 … m=petition

Julie...many inventions are born out of curiosity and arrive from a hobby activity. 
Perhaps 10 years ago (or less) this invention was documented on the 60 Minutes. I remember it well because it was the time my husband had been diagnosed with CCA and was looking for possible treatment options.  Both, the inventor and Dr. Curley had contributed to the section of the show. 
The  Kanzius Research Foundation ended it's mission in 2014 with the approval by the FDA.
http://www.kanziuscancerresearch.org/
The inventor's wife sold the sell intellectual property rights to the radio wave treatment to AkesoGenX .  They will raise the funding for a clinical trial and determine a Principal Investigator.
See here:
http://www.news-press.com/story/life/we … t/5569473/
Appears that they are looking at 2016 (or a bit later) to start a clinical trial.
Hugs,
Marion

3

(11 replies, posted in General Discussion)

Perfect, Spedo. 
Hugs,
Marion

middlesister....The median survival is measured at a time when more than 50% of patient have survived. The ABC study, comparing gemcis/vs. gem alone noted a medium survival of 11.7 months among the 204 patients in the cisplatin-gemcitabine group and 8.1 months among the 206 patients in the gemcitabine group. 
The  http://www.ncbi.nlm.nih.gov/pubmed/26204219 study did not look for statistical data measuring  median Overall Survival (OS) after the SIRT treatment.  This study's endpoints are  progression-free survival (PFS) and overall survival (OS) only.   
Hugs
Marion

5

(11 replies, posted in General Discussion)

Spedo.....it's always best to contact the physician for anything that may occur including sudden onset of pain.   If pain increases and you can't reach anyone then the best option is to take your husband to the nearest hospital.  Perhaps the pain is related to the cancer or treatment or it may not have anything to do with his disease at all.  Either way, try not to figure it out on your own. 
Sending tons of warm wishes your way,
Hugs,
Marion

Thanks, Julie....here is one of numerous postings re:  Kanzious  (Search function will display others)
http://www.cholangiocarcinoma.org/punbb … 664#p55664
Hugs
Marion

dmiller....happy belated Birthday.  In addition to the great advice already given I wanted to mention that some people wear gloves when touching anything cold.
Good luck to all participants in this clinical trial.
Hugs
Marion

8

(11 replies, posted in General Discussion)

Spedo... so happy you were able to connect with this great group.  I am wondering: is the original diagnoses intrahepatic or distal Cholangiocarcinoma? 
Hugs,
Marion

This is an important study researchers are eager to investigate.  Is Gemcitabine/Cisplatin effective in an adjuvant setting (post surgery?)  Please know this clinical trial is conducted only in Germany.
Hugs,
Marion

Scientists Identify Gene Vital for Rebuilding Intestine After Cancer Treatment
http://www.mdlinx.com/gastroenterology/ … 30/6261682

now it needs to transferred from mouse to patient research study.

Marion

SGM.....Once the infection clears hopefully many of your father's symptoms will lessen. 
Good luck tomorrow and please keep us posted.
Hugs,
Marion

12

(6 replies, posted in Good News / What's Working)

Genevieve.....another success story to follow.  Congratulations on all accounts. 
Hugs,
Marion

Your donations at work with the Cancer Genome Atlas.  Please see link:
http://servicetoamericamedals.org/honor … rofile=423

14

(54 replies, posted in Clinical Trials)

Dr. Rosenberg was awarded for his many years of public service within the NIH:
http://www.washingtonpost.com/lifestyle … story.html

Steve.....welcome to our special group.  Nearly everyone on this site (or their loved one) has been on Gem/Cis.  I hope that they will chime in and share personal experiences with you. 
I am wondering: have you consulted with your wife's previous surgeon at Lahey clinic?
Hugs,
Marion

Elizabeth....happy to hear.  Please keep us posted.
Hugs,
Marion

Julie....muscle cramps are listed as Cisplatin rare side effect:
http://www.drugs.com/sfx/cisplatin-side-effects.html
Hugs,
Marion

suggi......already you are on the right tract by consulting with a center very familiar with this disease.  At this point the suspicion of bile duct cancer must be confirmed, as some biliary strictures are not cancerous in nature. 
Please keep us posted - we care.
Hugs,
Marion

19

(8 replies, posted in Introductions!)

Karen....albeit intermittent responses are included, this link shows posts from our Australian members:
http://www.cholangiocarcinoma.org/punbb … 2085486119
As Lainy mentioned, it is unlikely for many to regularly visit our board, hence you might want to reach out to them by personal e-mail. 
Click on name - another window will open with their e-mail address.

Good luck
Hugs
Marion

aimini.....perhaps you can request your Dad's medical records and make contact with Mass. General. 

massContact Links:
•Contact Information
•Appointments
•Online Consultation/Second Opinions

Hugs,
Marion

There is however another side to this as well.  One company invested $1 billion  Dollars in bringing a "curative" drug to the market.  There is substantial risk in this endeavor to pharma and loss of substantial amounts of monies are never to be dismissed.  Somehow though drug development must equate to patient care and feasibility of obtaining treatment for the general population. 
Marion

22

(1 replies, posted in Websites)

Nice information, Gavin, thanks for sharing.

Hi (again) Diego....as mentioned, Gem/Cis is the standard of care for this disease  (in most instance) patients must have failed this regimen prior to enrolling in a clinical trial. 
However; please take a look at our clinical trials section and particularly on those that have been highlighted with a "sticky."
Additionally, has a biopsy confirmed the cancer?  If so, then tissue should be available for molecular testing. 
Hugs,
Marion

Daisy.....several members have experiences with Mass. General.  I hope they help you out. 
Hugs
Marion

Drug costs are highest for the US population causing an enormous burden on patients not only fighting a disease, but having to deal with the enormous cost associated with treatment. Advocates are behind this in full force.
Hugs
Marion