(11 replies, posted in General Discussion)

Of course, Gavin, everyone touched by this cancer should place their picture on this thread.

Note:  Data is collected 1999 to 2014.  Accumulated data beginning 2014 - 2019 should show improvement.

This is informative for all tending to our loved ones.
https://www.cancer.gov/about-cancer/cop … his_13_toc

What to ask your medical team?
how often do you treat this cancer?
what are my options?
why are you presenting this trail to me?
what are we studying:  improve survival, potential side effect, what is potential benefit and what are we comparing it to?
do I need to travel?
why should I consider a clinical trial?
what is standard of care for now?
are clinical trials are the last resort?
is a study better than standard of care?
how I am protected while participating in a clinical research study?
what trial do you offer in your institution and what else is out there?
and everything you need to know.

Please follow this link:


(11 replies, posted in General Discussion)

Lainy.....The new faces differs from the one we had initiated many years ago.  The new "Faces" is meant for everyone touched by this cancer whatever stage it may be.  It would be nice to see your picture there as well and all of us interacting on this site, including the many people reading this message board only.  Please join us.


whatnow.....it is a never ending learning cycle with this cancer.  Know that we are here to help you understand and don't hesitate from asking question.  The members of this board understand, as all of us began were you are now. 

The CA 19-9 tumor markers most often are used as another tool in determining if the tumor is growing, remaining stable or is getting smaller.  It is not an absolute and can rise for other reasons as well.  On it's own, the maker does not carry much value.

Good luck tomorrow and hugs to your kids. We are in this together.



(11 replies, posted in General Discussion)

There is a place for a photo and story for those wanting to add to the "Faces of cholangiocarcinoma." 
Please take a look: http://cholangiocarcinoma.org/faces/


googily....as much as we wish it to be different, traveling to other locations for enrollment in a specific clinical trial is the norm rather than the exception.  It's inconvenient and costly as well.  Eventually, the MATCH trial as well as the TAPUR study will be offered throughout the US, but at the present numerous obstacles have to be overcome. 
Given your situation I think your plan is well laid out, dear googily.  My only concern, which may be unwarranted, is related to the inclusion criteria for future clinical trials if indeed you resorting to FOLFOX.  But, for all we know, Bill do will well with either treatment.

Good luck and tons of good wishes,

Thanks, Gavin.

Quote:  KRAS and p53 mutations are associated with an aggressive disease prognosis while FGFR mutations may signify a relatively indolent disease course of intrahepatic cholangiocarcinoma.

FGFR and IDH mutations have promising agents in clinical trials at this time. 

An estimated 10-15 % of cholangiocarcinomas have DNA repair mutations and may be candidates for immune therapies with checkpoint inhibitors.


(27 replies, posted in Introductions!)

Lynn.....I agree with Lainy, contact the physician.  You may want to ask why these symptoms appear in the first place.  Is it due to disease progression and if so,  how can it be addressed? 


(49 replies, posted in Introductions!)

googily......as far as I know, Foundation One does test for PD-1 and the PDL-1 ligament.  It won't hurt to double-check though.

Here is more on ArQ-97: http://www.arqule.com/wp-content/upload … I-2016.pdf



(49 replies, posted in Introductions!)

googily....look into this NCI MATCH clinical trial as well:


This is a retrospective study referring to patients with early-stage disease, who underwent surgical resection and received radiotherapy. Intrahepatic patients with negative margins benefitted from improved survival.  Patients with positive margin but  no lymph node invasion treated with radiotherapy did not fair as well.

I too am looking forward to additional stories, dear Gavin.  Anyone living with cancer is a survivor no matter how long it's been.  Fingers crossed for additional entries.



(49 replies, posted in Introductions!)

googily.....I would consider a second and perhaps a third professional opinion.

Additionally, your oncologist could reach out to the ASCO Tapur study team.

There are some variances to patient inclusion. 
For example:
What if a patient does not have one of the drug-cancer-gene matches specified in the study?

The TAPUR Molecular Tumor Board (a group of experts convened by ASCO) will provide review and discussion of cases that do not fit the criteria specified in the protocol, as well as cases where the treating physician requests guidance. The ultimate treatment will be the decision of the patient and the treating physician. Some possible outcomes other than enrolling on the TAPUR study include:

Treatment on another clinical trial. The Molecular Tumor Board will be able to provide information on alternate ongoing clinical trials for consideration.
Treatment with off-label therapy outside of TAPUR protocol. The treating physician may recommend administering an off-label commercially available therapy that is not included in TAPUR.

Others, please chime in on this.
Thanks much,


What does it mean to be in septic shock? Sepsis is when the body’s response to a serious infection gets out of control.
Signs include:  fevers, shaking chills, flushed skin, racing heartbeat, and confusion, among other things. As the illness progresses, the blood pressure drops dangerously low, and organs can stop functioning correctly. This can take hours or days, depending on the individual. If sepsis is at all suspected, the patient should be brought to medical attention as quickly as possible. Remember, sepsis is a medical emergency and rapid treatment can make all the difference in whether or not a person recovers.

Read more: http://www.health.harvard.edu/blog/seps … ;ml=258807

Cholangiocarcinoma patients are prone to infections.  Most are related to stent occlusion (blockage) which in tun can causes cholangitis, a bacterial infection of the biliary system which may lead to sepsis.  However, all patients with cholangiocarcinoma are at risk for ascending cholangitis, which must be treated immediately.

Cholangiocarcinoma is rare. This means that community doctors outside of your specialized treatment team may not be familiar with the management of specific complications that may arise during your treatment.  This card will provide medical personnel with information on how to contact your doctor(s) should it be necessary.  If your doctor(s) cannot be reached, it will direct medical personnel to specific guidelines for your treatment.

We recommend the  click print card,  keep with you at all times, and show to any medical personnel who may be treating you.

Follow this link:http://cholangiocarcinoma.org/biliary-emergency-information-card/biliary-information-card/

To read more, use this link:
http://cholangiocarcinoma.org/biliary-e … tion-card/



(49 replies, posted in Introductions!)

googily....I am so sorry to hear this.  Your husband felt significantly better following the first chemotherapy treatment and yet his tumors increased?

Metastases to femur bone had been discussed on this site and I recall a study, which may be of use to you: https://www.ncbi.nlm.nih.gov/pubmed/25683996

Bone metastases are not unusual and often times respond successfully to radiation treatment.  All in all, I wonder why this would interfere with the planned SirSphere? 

Soon you will know more, dear googily and a game plan will be in place.


Thanks, Michelle.

The strongest evidence of the effect of acupuncture has come from clinical trials on the use of acupuncture to relieve nausea and vomiting, but acupuncture appears to be more effective in preventing vomiting than in reducing nausea. Read more:
https://www.cancer.gov/about-cancer/tre … ncture-pdq

Congratulations. I am so very happy for you.  Despite all of the adverse events you and your "wife" have enjoyed a beautiful day.  Hats off to you both. 
I don't think that anything beats the surgeon's eyes, if he doesn't feel the removed tissue looks to be malignant in nature then this is a wonderful sign.  Fingers and everything crossed for the results to confirm the specialists opinion.

Hugs to you and your wife,

Advanced biliary cancer that has recurred
Where is study conducted?  Moffitt, Florida

http://cholangiocarcinoma.org/a-phase-i … y-cancers/

Pneumonitis occurs in approximately 5% of cancer patients treated with anti–programmed death 1 (PD-1)/programmed death ligand 1 (PD-L1) immunotherapy agents, according to a new analysis. The complication tends to be low grade and easily resolved, though it can worsen and result in death in rare cases.

Read more: http://www.cancernetwork.com/cancer-com … tic-agents

Hercules....these type of updates are enormously important to us.  Thank you.  Scar tissue build-up is one of the problems many others encounter.  What is the medication you take?  I assume it is not Ursidol.
Again, thanks so much, dear hercules for your continuous interaction with the global patient community.  You rock.


https://directorsblog.nih.gov/2016/09/2 … -for-life/

Dave.....Karen D, oncology nurse, had posted the below/  I hope it is of help to you. 

Information gathered on biliary drains from major centers of care in the United States, search terms: Biliary drain leakage, biliary drains, biliary drains not attached to drain bag, leakage at insertion site from biliary drains

https://stanfordhealthcare.org/content/ … cation.pdf

Memorial Sloan Kettering (MSKCC)
https://www.mskcc.org/cancer-care/patie … e-catheter

University of Washington
http://www.uwmedicine.org/health-librar … drain.aspx

The Ohio State University Medical Center
https://patienteducation.osumc.edu/Docu … yDrain.pdf

University of San Francisco (UCSF)
http://campuslifeservices.ucsf.edu/dmx/ … UR0320.pdf

Beth Israel/Harvard
http://www.bidmc.org/Centers-and-Depart … 0tube.ashx

Common finding: If leakage, attach to drain bag.  These facilities say to flush daily with saline and to call if excessive leakage.

-Karen, RN, CHPN