Patients' Questionnaire (Summary)

Age: 48
Gender: Female
Age when diagnosed: 46
Diagnosis and Stage: Intrahepatic CC- Stage 4
Initial CA19.9: 873
Lymph nodes involved? Yes, one in the gallbladder
History of cancer? No
Resectable? Yes
Had surgery (with details if applicable)? Liver resection in September 2010 removing over 75% of my liver. The gross mass of the tumor completely removed but could not get clean margins due to it being up against the portal vein so they burned an additional 3 mm. Second liver resection in August 2011 to remove two new tumors. This time they removed over 35% of my liver using surgery, nano knife and intraoperative radiation.

Liver transplant? No
Hospital: The Cleveland Clinic Foundation
Oncologist: Dr. John Fung(liver surgeon) - Dr. Bassam Estfan(oncologist) - Dr. Kevin Stephens(radiologist)
In remission (currently or was)? Yes, 14 weeks ago my scan showed the two tumors were dead and my CA 19-9 was 25.
Survived since diagnosis (years/months/weeks):2 years, 2 months
Chemo 1: 5 FU
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: trended down
Side effects Chemo 1: fatigue, nauseau
Chemo 2: gemcitibine
Length (and/or number of treatments) of chemo 2: 4 months and stopped because new tumors developed
CA19.9 trend during Chemo 2: increasing numbers
Side effects Chemo 2: fatigue, nausea, GI pain, aches and pains
Chemo 3: FOLFOX
Length (and/or number of treatments) of chemo 3:4 months then stopped because new tumors developed
CA19.9 trend during Chemo 3: numbers increased
Side effects Chemo 3: neuropathy, fatigue, nausea , hyper pigmentation, mouth sores
Advice for chemo:
Cyber knife? No
Radiation? Yes, steriotactic radiation, two different times
CA19.9 trend during radiation: initially went up as radiation killed off the tumors then decreased. The tumors were killed both times by the steriotactic radiation.
Chemoembolization? No
Radioembolization? No
Experimental treatments? No
Any other conventional treatments?
Alternative treatment? Acupuncture for side effects of chemo - very helpful
Use of supplements? Selenium, vitamin C, vitamin D, iron and omega 3-6-9
Special diet? Green juice once a day. Limited sugar. Very limited amounts of animal products. Very little dairy products. Mostly organic diet, about 80%. Green tea.
What worked for nausea (best)? Compazine
Biggest regret: not going to the doctor sooner
Best advice given to me: pray, stay positive, go to a specialist that treats many CC patients, get a second opinion, never give up hope.
Best tip/idea/recommendation: diet changes have really kept me feeling good. Post your status updates on caringbridge or a blog so you don't have to call everyone anytime there is a change.
What would you have done differently? Gone to the doctor sooner
Current status: blood work and pet/cat scan coming up
Comments: research and stay on top of your illness but don't believe everything you read.

Age: 56
Gender: Female
Age when diagnosed: 53
Diagnosis and Stage: Extrahepatic CC, stage 2b
Initial CA19.9: 17
Lymph nodes involved? No
History of cancer? Yes, breast and thyroid
Resectable? Yes
Had surgery (with details if applicable)? Whipple 12/2009, clear margins
Liver transplant? No,not necessary as no cancer in liver
Hospital: Strong Memorial Hospital, Rochester, NY (Wilmot Cancer Center)
Oncologist: Alok Khorana
In remission (currently or was)? Yes
Survived since diagnosis (years/months/weeks):  2 years 11 months
Chemo 1:  Gemzar
Length (and/or number of treatments) of chemo 1:  6 months, 1x week/3 weeks, 1 week off
CA19.9 trend during Chemo 1: 17
Side effects Chemo 1: constipation , intestinal blockage, general yucky-ness,  nausea, dehydration
Chemo 2: n/a
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:  Stay hydrated, ask for change in nausea drugs if one not working,  keep bowels moving, GET A PORT
Cyber knife? NO
Radiation? NO
CA19.9 trend during radiation:NO
Chemoembolization?NO
Radioembolization? NO
Experimental treatments?NO
Any other conventional treatments?NO
Alternative treatment?  Reiki, Acupuncture, Massage
Use of supplements? NO
Special diet? Don’t eat red meat and little dairy
Complications during treatments?
What worked for nausea (best)?  Ativan
Biggest regret: None
Best advice given to me:  Be kind to yourself.
Best tip/idea/recommendation:  Get a port for chemo right away, it saves a lot of anxiety and pain
What would you have done differently? Nothing
Current status:  Healthy, scan due in December
Comments:
I’ll edit this later on and add my comments then.

Thanks to all that responded so far!
Here is the information about my husband who recently passed away.
P.S. I added jaundice and second opinion and some other questions as well.

Age: 65
Gender: Male
Age when diagnosed: 64
Diagnosis and Stage: CC (Klatskin) and Pancreatic cancer stage IV, metastasized - omentum mass size of a grapefruit, spots on liver and tail of pancreas
Jaundice: 2 weeks after diagnosis
Initial CA19.9: 12000
Lymph nodes involved? Not sure, nobody mentioned it
History of cancer? No
Resectable? No
Had surgery (with details if applicable)? not Whipple, but appendix removal - that's what prompted diagnosis
Liver transplant? n/a
Hospital:
Oncologist:
Second opinion: Went to Duke to gastro-oncologist; he confirmed diagnosis and recomended the same type of chemo
In remission (currently or was)? No
Survived since diagnosis (years/months/weeks): almost a year (minus 8 days)
Chemo 1: Gem/Cis
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: 24000 -> 2900 -> 3200
Side effects Chemo 1: Nausea, pain, appetite loss, weight loss, tiredness
Chemo 2: Xeloda
Length (and/or number of treatments) of chemo 2: 5 weeks
CA19.9 trend during Chemo 2: went up
Side effects Chemo 2: Nausea, stomach cramps, constipation, weight loss, tiredness
Chemo 3: folfirinox
Length (and/or number of treatments) of chemo 3: 3 months
CA19.9 trend during Chemo 3: up to 11000, then down to 7800, then up to 12000
Side effects Chemo 3: Nausea, vomiting, neuropathy, pain, constipation, appetite loss, weight loss, tiredness
Advice for chemo: schedule IV fluids a week or so after the chemo - to avoid dehydration; go out to dinner on the day of the chemo; prevent constipation before it starts
Cyber knife? No
Radiation? No
CA19.9 trend during radiation: N/a
Chemoembolization? No
Radioembolization? No
Experimental treatments? Didn't qualify - initially because of jaundice, then later was tested for specific gene - didn't have it
Any other conventional treatments? No
Blood transfusion? Yes - improved blood count, but not feeling of well-being
Alternative treatment? No
Use of supplements? Tried Essiac tea in capsules while on chemo break in May (actually CA19.9 went up just slightly when he was taking it), Milk thistle, Kidney and bladder formula; few others, but he barely took those
Special diet? Replaced coffee with hot green tea; Ensure, protein drinks
Complications during treatments? Had kidney stones with placing urethra stent, that resulted in blood infection; In october 2012 - bowel obstruction
What worked for nausea (best)? Emend with Ativan in IV form
Biggest regret: Having last chemo on Oct 1 and finding out day later that cancer marker went up to 12000 and having bowel obstruction on day 3 after last chemo. Wish they tested CA19.9 before giving him chemo - since he was feeling bad non-stop
Best advice given to me: scheduling IV fluids after having chemo instead of waiting until dehydration starts
Best tip/idea/recommendation: Prepare will as soon as possible after diagnosis and discuss all final arrangements, regardless of patients' condition. We didn't talk about it and then it was too late!
What would you have done differently? A lot, unfortunately. 2 big ones (other than the ones mentioned earlier) - get the third opinion at John Hopkins and delaying chemo in July, until after we went on vacation. He wasn't able to enjoy the cruise at all...
Current status: deceased (Oct 18, 2012)
Comments: Wish we would have asked oncologist, how much longer would he have with the last type of chemo (assuming that it works). Doc only told us that if he doesn't have chemo, he won't survive the fall, which sounded to us - longer with it. Well - he had this grueling chemo and didn't survive this fall anyway. He suffered last month and a half tremendously. Now that I'm analyzing everything - he felt bad at least 70% of the time since the diagnosis and at least 90% bad during last 3 months.

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.
Hugs,
Marion

Hi Sharon,

You asked:

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:

http://seer.cancer.gov/

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

UK has a similar program:

http://www.ncin.org.uk/collecting_and_u … fault.aspx

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:

http://www.medscape.com/viewarticle/762919

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

Hope this helps,
Eli

Eli;

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.

Thought to revive this thread.   
Hugs,
Mar

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

Within the next few months you will see the announcements re: the Cholangiocarcinoma.org 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.

Hugs,
Marion