Patients’ Questionnaire (Summary)

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    I like the “best tip”…listen to your wife! Classic. Thanx for the laugh. That’s a good tip for anyone, not just cancer patients :)


    answering for my husband with his help~

    Age: 44
    Gender: Male
    Age when diagnosed: 44
    Diagnosis and Stage: ICC, Stage 4-spread to lymphs and lungs
    Jaundice: no
    Initial CA19.9: 77
    Lymph nodes involved? yes
    History of cancer? no
    Resectable? no
    Had surgery (with details if applicable)?
    Liver transplant?
    Hospital: Huntsman Cancer Institute
    Oncologist: Dr Sharma
    Second opinion: Yes
    In remission (currently or was)?
    Survived since diagnosis (years/months/weeks): So far 3 mos, 2 weeks
    Chemo 1: Gem/Cis
    Length (and/or number of treatments) of chemo 1: so far 5 rounds
    (Two weeks on and one off)
    CA19.9 trend during Chemo 1: Down, 37, then 33–just retested this week
    not sure of results
    Side effects Chemo 1: fatigue, some constipation
    Chemo 2:
    Length (and/or number of treatments) of chemo 2:
    CA19.9 trend during Chemo 2:
    Side effects Chemo 2:
    Chemo 3:
    Length (and/or number of treatments) of chemo 3:
    CA19.9 trend during Chemo 3:
    Side effects Chemo 3:
    Advice for chemo: none, has gone really well so far.
    Cyber knife?
    CA19.9 trend during radiation:
    Experimental treatments/Clinical Trials? none so far
    Any other conventional treatments? no
    Blood transfusion? no
    Alternative treatment? no
    Use of supplements? no
    Special diet? no
    Complications during treatments? none so far
    What worked for nausea (best)? no nausea at all
    Biggest regret: wish he didn’t have cancer :)
    Best advice given to me: Told to him by BOTH dr’s who diagnosed him:
    “Kyle you will make your OWN numbers in the fight with this cancer” (after
    giving survival stats….) Then telling him to forget those and be his own
    Best tip/idea/recommendation: Rest when tired. Listen to your wife (ok I made that one up!) ;)
    What would you have done differently? nothing so far
    Current status: Alive, fighting and doing great so far!
    Comments: Glad that so far things are working well and my body is responding. Told by my Dr today that I am doing “ridiculously well” with this type of cancer so far (blood work, numbers, etc). I will take that for as long as I can!


    Thanks for doing this. Within a few months, the Cholangiocarcinoma Foundation will launch the long awaited Patient Data Bank. The questionaire will be a bit more detailed, but still fairly simple to fill out.



    Age: 58
    Gender: F
    Age when diagnosed: Liver Bx age 56.5
    Diagnosis and Stage: Peripheral; Stage IV
    Jaundice: No,
    Initial CA19.9: 420
    Lymph nodes involved? No
    History of cancer? No
    Resectable? Initially, yes
    Had surgery (with details if applicable)? No
    Liver transplant? No
    Hospital: UMDNJ, Newark NJ
    Oncologist: Michael Levitt, MD
    Second opinion: Yes, CINJ
    In remission (currently or was)? No
    Survived since diagnosis (years/months/weeks): 16 months
    Chemo 1: Gem/Cist 2 weeks on/1 week off
    Length (and/or number of treatments) of chemo 1: 10 treatments
    CA19.9 trend during Chemo 1: stable until 10/2012 then started to increase in October; peaked at 941 in November
    Side effects Chemo 1: fatigue, nausea, severe pain with Neupogen injects not relieved w/Claritin or pain meds
    Chemo 2: Xelox (oxaliplatin and Xeloda) 1 day oxali infusion with 14 days of Xeloda/1 week off
    Length (and/or number of treatments) of chemo 2: 3 treatments; stopped 2/6/13 due to extreme side effect; restarted with 20% dose reduction 3/14/13 with two 1-week breaks due to low platelets
    CA19.9 trend during Chemo 2: decreased significantly on second line of treatment from 941 even through the 5-week break to 232; started to rise in March; 6/11/13 number is up to 580
    Side effects Chemo 2: initially significant loss of appetite, VERY watery diarrhea uncontrolled with meds, 25+ pound weight loss; anemia, fatigue, dehydration, and decreased electrolytes. With the current dose reduction, other than very occasional diarrhea, no side effects at all. However lowering platelets, Hemoglobin and WBCs are an issue.
    Chemo 3: N/A…for now
    Length (and/or number of treatments) of chemo 3:
    CA19.9 trend during Chemo 3:
    Side effects Chemo 3:
    Advice for chemo: 1) Keep hydrated! Water should be the first choice if possible. 2) Stay ahead of the nausea/diarrhea/constipation/any side effect; once you have to start ‘chasing’ it, you will lose the race. 3) Listen to the experience of fellow Chemo Buddies on your chemo regimen. Often you will hear of symptoms or experiences that your doc or nurse may not have heard before…that has been my experience. 4) No matter what you read or what you hear from other patients or people with ‘advice’, mention it to your doc and/or nurse before trying it yourself. No two people are the same, reactions can be different from one person to the next.
    Cyber knife? No
    Radiation? No
    CA19.9 trend during radiation:
    Chemoembolization? 03/2012 HACE
    Radioembolization? No
    Experimental treatments/Clinical Trials? No
    Any other conventional treatments? Portal Vein Embo along with HACE to prep for hepatic resection scheduled 5/22/12. Pre Op PET/CT 4/26/12 showed marked increase in size/number of tumors…surgery cancelled.
    Blood transfusion? No
    Alternative treatment? No
    Use of supplements? L-Glutamine, B6 and B12 for neuopathy.
    Special diet? No, I eat whatever I want. Time is not on my side, but ice cream is :)
    Complications during treatments? See above.
    What worked for nausea (best)? Nothing. Zofran, Compozine and Sancuso (patch) helped a bit but not very well when needed the most.
    Biggest regret: That I do not have the money or transportation resource to go to a Comprehensive Cancer Center. I had to quite my job, and my husband is self-employed and cannot afford to lose work to drive me long distances for treatments and doctor visits. Although my Onc practice is good, they do not offer any services such as social workers, nutritionists, integrated medical advice, etc.
    Best advice given to me: The oncology nurses have the best advice. I can’t think of anything specific, but they often have the answers I need.
    Best tip/idea/recommendation: As mentioned above: A) Listen to the experience of fellow Chemo Buddies on your chemo regimen. Often you will hear of symptoms or experiences that your doc or nurse may not have heard before. B) No matter what you read or what you hear from other patients or people with ‘advice’, mention it to your doc and/or nurse before trying it yourself.
    What would you have done differently? I knew I had a liver mass since May 2011. I am a Sonographer and found a liver mass on a renal sonogram ordered for microhematuria…the mass was an incidental finding with no signs or symptoms of hepatobiliary disease. My bosses (Radiologists) thought it was a ‘hemangioma of uncommon behavior’ and I had six month serial US and MRIs. Perhaps I should have had a biopsy earlier, before the mass became much larger and additional tumors appeared in the December 2012 US. But then I would have been on chemo for a longer period of time and would not have enjoyed those 18 months of my life without thinking about CCA.
    Current status: 13 months of chemo on second line of treatment with rising CA19.9.
    Comments: Listen to the nurses. In my opinion, doctors treat the disease, nurses treat the patient. In my Onc Practice, the docs follow the straight and narrow path and do not deviate ‘outside the box’. If I ask the nurses in a respectful manner without undermining the opinion of the docs, I often get a better answer to some of my questions.


    Age: 41
    Gender: Male
    Age when diagnosed:40
    Diagnosis and Stage: Intrahepatic IIA
    Jaundice: yes
    Initial CA19.9: never tested until after resection
    Lymph nodes involved? no
    History of cancer? no
    Resectable? yes
    Had surgery (with details if applicable)? 9/14/11
    Liver transplant? no
    Hospital: Memorial Sloan Kettering
    Oncologist: Dr. Richard Buck (Sarasota, FL)
    Second opinion: No
    In remission (currently or was)? currently, ‘cured’ CA19-9 is 23.9
    Survived since diagnosis (years/months/weeks): 1 year, 6 months, 1 week
    Chemo 1: Gemzar/Cisplatin
    Length (and/or number of treatments) of chemo 1: 3 months, 5 cycles adjuvant
    CA19.9 trend during Chemo 1: stable whole time below 30
    Side effects Chemo 1: none
    Chemo 2: none
    Length (and/or number of treatments) of chemo 2: n/a
    CA19.9 trend during Chemo 2: n/a
    Side effects Chemo 2: n/a
    Chemo 3: n/a
    Length (and/or number of treatments) of chemo 3:n/a
    CA19.9 trend during Chemo 3:n/a
    Side effects Chemo 3:n/a
    Advice for chemo: IV steroids worked and anti nausea!
    Cyber knife? no
    Radiation? yes
    CA19.9 trend during radiation: stable below 30
    Chemoembolization? no
    Radioembolization? no
    Experimental treatments/Clinical Trials? none
    Any other conventional treatments? no
    Blood transfusion? no
    Alternative treatment? no
    Use of supplements? no
    Special diet? no
    Complications during treatments? leaking bile after resection from reattachment of small intestine to form new bile duct took 3 months to stop leaking
    What worked for nausea (best)? Zofran (during radiation only)
    Biggest regret:none really
    Best advice given to me:from the surgeons: don’t look up anything on the internet before surgery, and I didn’t. Not even after for several months. Then I found this board and it was game on!
    Best tip/idea/recommendation:totally depends on your situation. Use the internet if you are being told something you don’t think is right and ask a lot of questions. My situation was unique in that we had surgery scheduled right after my first meeting at Sloan Kettering so I didn’t have the time to do any research. We didn’t even know it was CC until 5 days after the surgery.
    What would you have done differently?nothing
    Current status: CT every 6 months, that’s it!
    Comments:lucky to be here, lucky to have had symptoms because of location of tumor causing bile to back up into the liver.


    Kathy….you are not rambling; you are bringing up some great points.

    Within the next few months you will see the announcements re: the Data Base. We are still in negotiations with the company chosen and we also are still working on perfecting the format of the data base collection.
    This is a huge project and we want to make sure to get off to a great start.

    I hope that eventually we will collect information from the global Cholangiocarcinoma patient population at large.

    In re: to monies allocated for research, I had posted the following in the “Announcement” thread:

    2012 Cholangiocarcinoma Foundation Grants and Project Funding
    Grant $40,000 – UCSF Hepatobiliary Tissue Bank
    Advancing Translational Science in Cancers of the Biliary Tract through Biorepository of Human Tumor and Blood Specimens
    Supports: the UCSF Hepatobiliary Tissue Bank (CC#124512)
    Medical Team: Drs. Alan Venook (Medical Oncology), Katie Kelley (Medical Oncology), Robert Kerlan (Interventional Radiology), and Linda Ferrell (Pathology) at UCSF
    The overall goal of the HBTB is to advance our understanding of this rare and under-studied tumor type by developing a longitudinal biorepository of human tumor and blood specimens linked to clinical, pathologic, and demographic data from which current and future researchers, both within and outside of UCSF, can obtain high quality biospecimens and data. Specimens banked under this hepatobiliary tissue bank will be made available to UCSF and non-UCSF investigators in the future to perform laboratory studies including analyses of proteins, genetic mutations, gene expression, epigenetic features, or the growth of normal and malignant cells. This unique resource is expected to enable future biomarker discovery and validation studies (including paired metastatic and primary tumors when available), linked with clinical and pathologic data including survival.
    An immediate goal of the HBTB is to collect high quality frozen cholangiocarcinoma specimens along with paired normal tissue (blood or normal liver) to support the opening of a cholangiocarcinoma cohort within the National Cancer Institute’s The Cancer Genome Atlas (TCGA). A long-term goal is to partner with researchers from other institutions by sharing biospecimens and data for high priority collaborative research efforts which are critical to advancing the field in this rare tumor type. To these ends, the HBTB infrastructure and informed consent process have been designed to allow for future sharing of specimens across institutions as well as collection of data in a centralized database.
    Real-time collection and freezing of biliary tract tumors in the operating room, specimen processing, and banking of fresh frozen tissue and blood specimens for approximately 20 patients with biliary tract cancers undergoing a therapeutic procedure at UCSF in 2013
    An adequate amount (at least 100 mg tumor tissue) of these banked specimens will be held in reserve and allocated preferentially to The Cancer Genome Atlas (TCGA) upon opening a cholangiocarcinoma cohort in the future

    Specimen allocation will also be prioritized to collaborative projects across institutions, based upon our belief that the sharing of specimens and data will achieve the highest quality science in this rare tumor type

    The development of informatics infrastructure development to link HBTB Tissue Core Database with the web-based OnCore Clinical Trials Database

    Grant $44,202 – Hepatobiliary Neoplasia Registry and Biorepository
    International Hepatobiliary Neoplasia Registry and Biorepository
    Supports: Mayo Clinic, Rochester, MN
    Medical Team: Dr. Lewis R. Roberts, MB ChB, PhD
    The overall goal is to support the collection of clinical information and samples of blood and tissue from patients with hepatobiliary neoplasia in an IRB approved International Hepatobiliary Neoplasia Registry and Biorepository. Patients will complete a detailed scannable risk factor, family history and clinical history questionnaire and provide blood samples for processing into serum, plasma and DNA. If patients also have surgery or in some cases, biopsies, tissue specimens will be collected from tumor and adjacent benign/normal tissue. Tissue specimens not needed for clinical diagnostic purposes are quick frozen in liquid nitrogen, usually within 30 to 40 minutes after acquisition. Samples from the repository will be used for basic and translational studies encompassing the spectrum from research into basic pathogenetic mechanisms of hepatobiliary carcinogenesis, early detection and diagnosis of hepatobiliary cancers, prognostic prediction, and prediction of treatment outcome.
    Research Plan: The collected samples will be used for three main types of studies:
    1. DNA samples from patients with cholangiocarcinoma will be used for a genome-wide association study to determine the genetic variants that confer risk for cholangiocarcinoma.
    2. Serum samples from patients with cholangiocarcinoma will be used to validate new biomarkers for early detection and diagnosis of cholangiocarcinoma.
    3. Tissue samples obtained at surgical resection will be implanted into immunodeficient mice to create patient derived xenografts and will also be snap frozen in liquid nitrogen for future comprehensive genome-wide molecular analyses such as is performed by the National Cancer Institutes Cancer Genome Atlas Project (TCGA).
    Grant $40,000 – Cell Lines and Novel Antibodies
    Establish new cholangiocarcinoma cell lines from cholagniocarcinomas surgically removed from patients and evaluate novel antibodies to treat cholangiocarcinoma.
    Supports: Massachusetts General Hospital
    Medical Team: Dr. Cristina Ferrone, M.D. , PI.; Matteo Ligorio, M.D. Postdoctoral Fellow; Dr. Nabell El-Bardeesey
    The support will test a novel immunotherapeutic strategy which targets not only differentiated cholangiocarcinoma cells, but also cholangiocarcinoma stem cells (CSCs). Our research group has been able to establish two novel cell lines from a primary cholangiocarcinoma and a cholangiocarcinoma metastasis.
    Aim 1
    To develop novel cholangiocarcinoma cell lines, which we will test with a panel of tumor antigen specific monoclonal antibodies.
    Cell Line development with Dr Nabeel El-Bardeesey
    To address the paucity available cholangiocarcinoma cell lines, we have developed optimized conditions for the establishment of new lines from surgical specimens and biopsies.
    Specific Aim 1: To develop novel cholangiocarcinoma cell lines
    We have optimized the conditions and have been able to establish a cell line from an intrahepatic cholangiocarcinoma and from a cholangiocarcinoma metastasis to the bone. We plan to develop an additional 10 novel cell lines from surgically resected cholangiocarcinomas.
    Aim 2
    To determine if cholangiocarcinoma cell lines express clinically relevant tumor antigens identified by our panel of monoclonal antibodies.
    Specific Aim 2: To test cholangiocarcinoma cell lines with a panel of tumor antigen specific monoclonal antibodies to determine if and which tumor antigens are expressed by cholangiocarcinoma cell lines.
    Aim 3
    To determine if cancer stem cells are present in cholangiocarcinoma cell lines and to test whether cancer stem cells can be eliminated by specific monoclonal antibodies.
    Future directions.
    Additional experiments, not part of this application, will test whether the strategy found to be effective in eliminating CICs in vitro is also effective in eliminating CICs when cholangiocarcinoma cell lines are grafted in immunodefficient mice. To prove the clinical relevance of the results obtained with the cell lines experiments will be repeated utilizing cholangiocarcinoma tumors removed from patients.

    Grant $60,000 – ASCO YIA
    Young Investigator Award
    Supports: American Society of Clinical Oncology
    Medical Team: TBD
    The one-year $60,000 grant is intended to raise awareness and trigger progress against this cholangiocarcinoma, while providing critical early funding for physician-scientists at the beginning of their careers. Many successful programs have funded researchers early in their investigative careers. Providing early career grants help encourage investigators to focus their careers on bile duct cancer. The Conquer Cancer Foundation of the American Society of Clinical Oncology Grants Selection Committee will determine the recipient by evaluating the scientific merit of the Young Investigator Award applications using a two-part peer-review process. Recipients of the Young Investigator Award will be announced in April 2013.
    Regarding digestive tract cancers: Well, I for one am against lumping it together for the reason that they are different cancers and warrant different treatments. In fact, I would like to see intrahepatic separated from extrahepatic Cholangiocarcinoma because, no one really knows whether they are the same cancers.
    I can’t comment on the Robotic Surgery, but agree that operations should be less invasive to the body and result in less recovery time.

    Billions have been spent on cancer research and yet much is still to be discovered.

    Love your thoughts, Kathy.



    My doctor told us that there is no place at this point where records are kept. He felt that the rarity of this cancer necessitates a worldwide collection of data to be able to analyze better. Where results of lab reports are collected in other cancers, they are not with CC. Marion indicated that one is to start. Can you tell us when, where, and who will do the collection?

    It seems the person who started this thread had an interest in forming some kind of data base….or was this for personal interest only?

    I asked a number of times, especially of a person who was raising funds, where money can go to for research, but I never got an answer. Perhaps I have missed who is doing research, what the research is, and where it is. Is there a place to see a compilation of CC research? I know Johns Hopkins has a number to call when interested in raising money. I would like to know what specifically it would be for.

    I know for one, that my doctor is very interested in robotic surgery. For myself, I would like to know about relationship between diet/stress/general health and CC. General wisdom out there is that weight, exercise and stress all contribute to a breakdown in the immune system.

    While I am happy that all the money raised for breast cancer has been very instrumental in lengthening lives (my sister-in-law died of breast cancer at age 39); I still get very wistful wishing that we could raise the money in that amount for CC. My doctor said that if all the digestive tract cancers were put together, the numbers would far outweigh those of breast cancer. While there is probably a connection between them, the digestive tract cancers are separated out by location. Has anyone seen progress in the treatment over the years of CC?

    Sorry to ramble….wish there were answers!


    Thought to revive this thread.


    sharonlee…..I like your suggestion and will bring it up at the next board phone conference.
    In regards to collecting patient data: we are in the process of establishing our very own data collection bank and are hoping to begin collecting soon. This data collection will be much more specific and will be of interest to physicians and researchers alike. Unlike the thread Alla has introduced, the Cholangiocarcinoma Foundation and the patient will retain proprietorship of the data hence it will not be accessible to the general public.
    Alla’s thread is good in that people have a way to compare their disease to that of others. It is designed for that purpose only.



    Thank you for the reply. For you to take the time when you have to deal with so much yourself is a gift from God.



    To your second question:

    Unfortunately, there are no screening tests for cholangiocarcinoma. No blood tests; no urine tests; no nothing.

    Some tumors get caught early because the patient is having an MRI or CT scan for some other unrelated condition.

    We have seen reports that medical researchers are working on the early detection tests for CC. I don’t know how close they are to having a clinical test available.


    Hi Sharon,

    You asked:

    Do you know how studies are done for cholangiocarinoma?

    I know four types of studies.

    1. Clinical trials, or prospective studies.

    Doctors design the trial, recruit the patients, treat the patients, then publish the results.

    2. Retrospective studies.

    These are usually based on the medical records in a single hospital. The patients receive conventional therapy without entering any formal trials. Doctors publish the study based on the medical records collected over a certain period of time (can be as long as 5 or 10 years).

    3. Registry studies.

    National Cancer Institute collects cancer statistics in the Surveillance, Epidemiology and End Results (SEER) Program:

    The data in the SEER database is quite detailed. I’ve seen some CC studies based on SEER data.

    UK has a similar program:

    4. Meta-studies.

    Meta-studies are studies of studies. Doctors extract the statistics from the multiple previous studies, put it together to assemble a larger sample, then publish the results.

    Here’s an example of a huge CC meta-study:

    They analyzed 20 previous studies published from 1960 through 2010, involving 6,712 patients.

    Hope this helps,


    Thank you for the reply. At the top of the page there are catagories
    Home, Newly Diagnosed, Cholangiocarcinoma, Patient Support, etc.

    Can a new sub title be added perhaps under the Cholangiocarcinoma heading- Path others have taken – or something appropriate. I know there is a lot of information in the questionnaire. Do outside organizations gather and review any data? I am wondering if more people will fill out the questionnaire – if they are not looking in the general discussion area they perhaps will not see it.
    I have not filled out the questionnaire yet because for some reason it took so long to get a diagnosis for my Mom that I feel I don’t have appropiate answers for some of the questions. Do you know how studies are done for cholangiocarinoma? Would a doctor fill out a form when a person passes and forward it somewhere for study? I was also wondering if someone can tell me if there is any sign in a person’s body that would indicate or give some clue that there is a problem before it becomes full blown. My Mom was always having blood work because of the meds she was on. This did not matter. It was still too late. Thank you again for the reply and thank you to the individual who started the questionnaire.


    Sharon….Of course, we can change the location. Are you thinking of establishing an entirely new thread?
    Lack of space is our main problem therefore, Rick (our webmaster) has to stay within the limits of the program, but he is always open to suggestions from the members and gladly will try to accommodate everyone’s needs. This site can always be improved on. Let’s work on this together.


    Dear Trying to help

    Thank you for putting the questionnaire out there. I would like to see a catagory under Patient Support where this type of information doesn’t get lost amoung the topics. I don’t know how to go about getting this done, or if the board would agree to it. Other members have posted stats which also could be included in one of the main topic areas.
    Or perhaps there is an area already on the site which I have not seen.
    Thanks to all who are able to respond to this post.

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