At last, a decision has been made and one that will solve the problem in re: to constant stent changes. That is great news, dear Imcherry.  I don't recall any posting addressing the logistic of plastic stent removal combined with insertion of a catheter, but hopefully someone else can chime in and help you out.  But you have a valid question; surely and if asked, the physician will answer. Additionally, I will forward your posting to our Karen, oncology nurse.  Hopefully she can get back to us within a day or two.
Hugs,
Marion

2

(3 replies, posted in General Discussion)

Nidhidhakar......welcome to our site.  I have learned that a fluctuating CA 19-9 is common, however  a steady upward trend is carefully watched and taken under consideration if and when scans and other symptoms may lead to a more conclusive answer.  Please try to relax (I know it's not easy) but there is a chance for the markers to level out.  I hope for others to share their thoughts with you as well.
Hugs,
Marion

Paul....I couldn't agree with you more in that patients should have the right to their test results.  I think the problem with non-release of such are related to possible legal consequences companies want to avoid.  By Tuesday I should know more and I will make sure to pass it on to you.
Hugs,
Marion

Steven......I feel for you for having to make a decision with unknown outcome.  Unlike the previous years, when few options were available, today’s patients have more choices than ever, but these choices don’t come with a guarantee for success.  No one has the answer, but we have hope.  You must believe, dear Steven, that whatever choice you make, it is a decision made to the best of your ability and whatever the outcome, you have given it your all. 
Hugs and more hugs,
Marion

Steven.....The ASLAN team will be meeting up with our team at ASCO, Chicago on June 5th (I believe.)
I will make sure to report back to you.
Hugs,
Marion

Oh Paul, please forgive me, you are advocating for yourself and I am right with you on this.
So sorry for the mistake.  On another note: The Agios clinical trial coordinator and I in the process of setting up a brief phone conference for clarification of the consent form. I should have the answer real soon.
Hugs,
Marion

7

(4 replies, posted in Introductions!)

Julie....a warm welcome from me as well.  Of course you are too young to die; despite the diagnoses you are here to live your life to the fullest.  You are young, otherwise healthy and have the will and determination to take on this cancer.
Regarding liver transplantation: a few of our members were able to receive a transplant, but as far as I remember, all are hilar cholangiocarcinoma patients.  . 
Josh, who  was diagnosed with PSC  and cholangiocarcinoma  a few years back has a blog on our site. It can be  accessed it by using this link: http://www.cholangiocarcinoma.org/punbb … hp?id=4886
I agree with Debbie in that the cholangiocarcinoma diagnoses requires at least one second opinion from a physician/center treating a high volume of bile duct cancer patients. If you so choose to do so and based on your location, Princess Margaret Cancer Center would be the right place for you.

Hugs,
Marion

Additional updates:
1.       Study Launch:

The trial officially opened on March 14, 2016, with 4 launch sites, for a total of 37 locations. Visit www.TAPUR.org for a list of participating sites and contact information.

2.       Information available on ClinicalTrials.gov (NCT 02693535)

The TAPUR study is registered on ClinicalTrials.gov and can be found by searching for “TAPUR,” or by its NCT number (NCT02693535). The current list of study drugs is available, as well as detailed information on the study inclusion and exclusion criteria, and contact information for our participating sites (also available on www.TAPUR.org).


3.       Study Enrollment Update

The TAPUR study enrolled its first participant on April 11, 2016, only a few short weeks after launching, and enrollment numbers continue to grow each week. Current participant enrollment numbers will be announced during ASCO’s Annual Meeting on June 4, 2016.

TAPUR Study provided brochures.  Please click on link for full view:
http://www.tapur.org/sites/tapur.org/fi … y-2016.pdf

Today I participated in a webinar titled: “A new model to meet Biopharm Transparencey Mandates and engage Participants as Partners in Clinical Research”

The focus was on  Biopharma’s responsibility to communicate overview of study design and summary of results in scientifically accurate and easy to understand lay language to study participants. 

Patients want to know the results of their clinical trial:
What happened since my study ended? 
Why was the research needed?
What where the study results?

Although; study results of all interventional Phase II to Phase IV should be released by Biotech within one year of completion of trial, compliance to the ruling  has been sketchy at best.  Most often information is released in scientific journals only and due to the inability of accessing these journals, study volunteers (inadvertently) are denied the right to obtain study result information. 
Objective:
Most importantly, patients should be thanked for their participation in a research study. Information should include:
Clinical trial identification
Name and contact of sponsor
General trial info (where and when,  main objectives and the rationale supporting this study)
Population studied
Investigational medicinal products used
Adverse reactions and their frequency
Overall results and where additional information can be found
Comments on trial outcomes
Indication if follow up trials are foreseen

I hope for these initiatives to take hold and set a universal standard for patient participation in all clinical research studies.

Marion

Paul.....programs are in place for investigational (compassionate) use of agents not yet commercialized. This ruling applies to all drugs with investigational status.  Physicians and Industry must comply with FDA rulings explained here: http://www.fda.gov/ForPatients/Other/Ex … 041768.htm

Additional information can be found on the respective websites:

Keytruda:  Physicians can request Expanded Access (Compassionate Use)

THE MERCK CO-PAY ASSISTANCE PROGRAM
https://www.merckaccessprogram-keytruda.com/hcc/

Opdivo:

Bristol-Mayer-Scibbs Patient Assistance Program
http://www.bms.com/products/patient-ass … sured.aspx

Another option to consider is possible enrollment in the ASCO TAPUR study:
http://www.tapur.org/

I too am puzzled by the consent form criteria and have reached out to Agios for detailed explanations and will report back with any information received.

Hang in there, dear Paul, you are a fantastic advocate for your Mom.

Hugs,
Marion

12

(12 replies, posted in Introductions!)

Dear Mariza.....please accept my most sincere condolences on the passing of your dear Dad.  Life without him will never be the same, but with time you too will come to cherish that the love you hold for your Dad will become a memory and this memory will become your treasure for the rest of your life.
Hugs and love,
Marion

13

(8 replies, posted in General Discussion)

sharon......don't hold back from asking the physician; not only do you deserve an answer,  you are entitled to it as well.  Based on my experience and that of others, I am tempted to put value in the information provided by the literature.  Please speak with the physician.
My heart is with you,
Hugs
Marion

Thanks for putting this out to the community, dear Lourdes.  This appears to be a great conference and like you I hope for someone to attend and to share the gained information with us.
Hugs
Marion

15

(3 replies, posted in Clinical Trials)

bgeo.... Stable disease with relatively few side effect makes for excellent news. Most importantly, you have outlived the grim predictions of your life expectancy with fairly good quality of life.  The fact that other treatments are available to you (if, and when needed) should give you a sense of relief and empowerment and resemble that of living with a chronic disease.
I attached a link to the trial you are participating in:
https://targetedcancercare.massgeneral. … enes/FGFR1

Phase I trials are designed to establish toxicity levels by identifying the the optimal dose needed for effective drug response (efficacy) and patient's tolerance to  the drug.  Phase I trials are intense, require significant time commitment and as noted by you, often require drug escalation or drug reduction.  You seem to be handling this very well and I congratulate you for that.

I think it's important for people to remember that when participating in a research study,  their voices must be heard.  After all, science applied to humans must integrate the patient's input.

Although you are asked to respond to questions posed by the physicians, know that some points not necessarily fit your response.  And, this is where you come in.  For example: In comparison to yesterday you have a fair amount of energy, but how exactly did you feel the day before?  If you are up to it, try to have a note pad and record each and every symptom experienced and integrate this information in the discussion with the nurse and/or physician. Ultimately, you are to benefit from this study and this is one way to assure that your needs are met.

Again, congratulations on doing so well and thank you so much for sharing this invaluable  information with us.   Perhaps the other cholangiocarcinoma patient enrolled in this trial will join us in this discussion and help you feel less isolated while undergoing this treatment.

Hugs,
Marion

Q&A with medical oncologist and immunotherapy researcher Patrick Ott.
http://www.cancertodaymag.org/Spring201 … k-Ott.aspx

17

(38 replies, posted in General Discussion)

Kernos....please count me in.  Wishing for absolute success.
Hugs,
Marion

Steven.....i agree with your statement in that we don't have data supporting the effectiveness of       the monoclonal antibodies Keytruda or Opdiva, which have shown positive responses  in a subset of melanoma or lung cancer patients.  But we have seen some spectacular results in some cholangiocarcinoma patients harboring the ID-1 alteration or PD-L1 ligand.  Ultimately, we will have to await the outcome of several clinical trials underway, but I believe given the few currently available options,  Keytruda or Opdiva could be considered a choice for second or third line  of treatment.  It's a tough choice to make, dear Steven, we don't have the answers, but we have hope.
Hugs,
Marion

19

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

Jack......nice to see you again and thank you for sharing the wonderful news with us.  Congratulations on holding this cancer at bay.  Your website provides for a wonderful read, inspiration and the message to live life to the fullest, an inspiration to us all.  In order to not loose the link within the numerous postings, you may want to consider adding it to the BLOG thread of our site.
http://www.cholangiocarcinoma.org/punbb … .php?id=31

Again, congratulations.  I am looking forward to continuous good news heading your way.

Hugs,
Marion

Amy.....my heart breaks for you and your family.  Diagnosis to passing came about awfully quick leaving you with a broken heart and sorrow for a life lost too early..  Please accept my most sincere condolences. 
I too am not aware of linkage of the mentioned drugs to the disease of cholangiocarcinoma.   There are several risk factors with possible linkage to this cancer,  but none have been clinically proven to cause this cancer.  The majority of cases develop due to unknown reasons, but I  believe that  with time this  question of cause will be answered.

I wish for your heart to begin to heal.....one day at a time.
Hugs and love,
Marion

21

(66 replies, posted in Introductions!)

Tiah.....count me in on the Birthday wishes.  Your Mom deserves a great day and fantastic results from the  SIRT treatment.
Hugs,
Marion

First and foremost I am hoping for others to come forward and share his/her personal experience with us. 
In the meantime though you may want to use the Search function by entering the key words: metal stent. 
Overall and based on my recollection of previous reports, the majority of patients reported few problems with covered SEMSs.  There had been discussions of stent occlusion by tumor ingrowth, tumor overgrowth and biliary sludge, but a second stent insertion or  mechanical cleaning appeared to have solved the problem.  The overall of benefit of metal stent longevity by far superseded the inconvenience and discomfort of frequent plastic stent replacement.

I know you wish for someone to share first hand experience and I hope for that someone to be so kind and help you out.
Hugs,
Marion

Fantastic response, dear Kathi.  Not only are your living life to the fullest with virtually no side effect, you are enjoying fantastic results as well.   Thanks for sharing the great news with us.  I am looking forward to continued success.
Hugs,
Marion

24

(8 replies, posted in Members' Cafe)

I am so sorry; this is not how life should be. With your pain I hope and wish for you and Ron to also find some comfort in the preciousness of this physical and emotional challenging time.  I wish for strengths and want you to know that my heart is with you, all the way.

Hugs and more hugs,
Marion

25

(4 replies, posted in Chemotherapy)

Megan......sorry I came late to the post and missed sharing this with you prior to the appointment. 
Perhaps  you addressed everything with the oncologist,but may find some of the information useful for a future visit: https://www.mskcc.org/blog/making-most- … oncologist
How did it go, yesterday?
Hugs
Marion