1 (edited by tryingtohelp Tue, 13 Nov 2012 15:56:04)

Topic: Patients' Questionnaire (Summary)

Hello everyone. I'm staring a new topic that hopefully would help newly diagnosed, as well as being good resource for others who continue their fight. When I was researching information for my husband, I would often come across an issue that while I think I found "identical" case, going back I find that the person might had a resection or liver transplant, therefore it won't apply to my husband' case. And kept thinking, that it would be nice if we had a topic with summary of experience and after finding similar case, research it further or contact that specific person (patient/caregiver). Of course I understand that no case is identical and everybody reacts differently to the treatment, but I still think it would be helpful for many.
Below you will see the list of questions and please answer only to the questions that you are comfortable answering and skip others, if needed. If you'd like to add any other question, that might benefit others - please do so. Or if you had more than 3 chemos and multiple instances of radiation - please add that information as well. I also think that summary of information about our loved ones who already passed, would be helpful as well. I appreciate everybody's input! Sincerely, Alla

Please copy and paste the questions below into your reply -

Age:
Gender:
Age when diagnosed:
Diagnosis and Stage:
Jaundice:
Initial CA19.9:
Lymph nodes involved?
History of cancer?
Resectable?
Had surgery (with details if applicable)?
Liver transplant?
Hospital:
Oncologist:
Second opinion:
In remission (currently or was)?
Survived since diagnosis (years/months/weeks):
Chemo 1:
Length (and/or number of treatments) of chemo 1:
CA19.9 trend during Chemo 1:
Side effects Chemo 1:
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:
Cyber knife?
Radiation?
CA19.9 trend during radiation:
Chemoembolization?
Radioembolization?
Experimental treatments/Clinical Trials?
Any other conventional treatments?
Blood transfusion?
Alternative treatment?
Use of supplements?
Special diet?
Complications during treatments?
What worked for nausea (best)?
Biggest regret:
Best advice given to me:
Best tip/idea/recommendation:
What would you have done differently?
Current status:
Comments:

Re: 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.

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Patients' Questionnaire (Summary)

Age:
Gender: Male
Age when diagnosed: 73
Diagnosis and Stage:1B ExtraHepatic   In bile duct valve.
Initial CA19.9:
Lymph nodes involved? NO
History of cancer? NO
Resectable?
Had surgery (with details if applicable) WHIPPLE
Liver transplant? NO
Hospital:   Columbia in Milwaukee, WI
Oncologist: Lyle Henry, Milwaukee/Jack Cavalcant, Phoenix
In remission (currently or was)?  3   years
Survived since diagnosis (years/months/weeks):  5 Years 4 Months
Chemo 1:   5 Doctors/Radiologists said No
Length (and/or number of treatments) of chemo 1:
CA19.9 trend during Chemo 1:
Side effects Chemo 1:
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:
Cyber knife?  Yes 3 years after Whipple returned to where Duodenum used to be.
Radiation? Yes to bring tumor under 7CM for Cyber Knife (25 treatments)
CA19.9 trend during radiation:
Chemoembolization?
Radioembolization?
Experimental treatments?
Any other conventional treatments?
Alternative treatment?
Use of supplements? B12 shots monthly
Special diet? NO
Complications during treatments?  1st Whipple aborted after 4 hours in surgery/2 nd Whipple successful/double e coli infection between the 2 surgeries/little hole developed inside, required 3 weeks in rehab on only IV to heal.
What worked for nausea (best)? Zofran/Compazine
Biggest regret:Not taking his Morphine to in Hospice Facility at end.
Best advice given to me: Be strong, by Patient
Best tip/idea/recommendation: Be strong. Listen to your Gut. Get 2nd/3rd Opinion
What would you have done differently? 5 years ago things were different from today, but no regrets.
Current status:Teddy Passed on December 6, 2010.
Comments:

Email tryingtohelp
Report Post 1 Quote Post 1
2 Reply by lisacraine Yesterday 18

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Patients' Questionnaire (Summary)

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.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Patients' Questionnaire (Summary)

This is info about my daughter, Lauren. I asked her the questions and she answered them in her own words.

Age: 26
Gender: Female
Age when diagnosed: 25
Diagnosis and Stage: Advanced Intrahepatic Cholangiocarcinoma
Initial CA19.9: 125
Lymph nodes involved? Questionable. Swollen but did not light up on PET
History of cancer? No
Resectable? No
Had surgery (with details if applicable)? No
Liver transplant? No
Hospital: University of Michigan Comprehensive Cancer Center
Oncologist: Dr. Mark Zalupski
In remission (currently or was)? No
Survived since diagnosis (years/months/weeks): 1 yr. Diagnosed 8/29/2011
Chemo 1: Gem/Cis and 5-FU once every 2 weeks
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: Going up to almost 400
Side effects Chemo 1: Fatigue, body aches, hair loss.
Chemo 2: Gemzar and 5-FU
Length (and/or number of treatments) of chemo 2: 2 months
CA19.9 trend during Chemo 2:
Side effects Chemo 2: Fatigue and body aches, not near as bad as with Cisplatin. Was taken off Cisplatin to avoid kidney damage.
Chemo 3: Xeloda and Oxaliplatin
Length (and/or number of treatments) of chemo 3: 4 months
CA19.9 trend during Chemo 3: Going down to mid 200s.
Side effects Chemo 3: Nausea, red, peeling soles of feet, body aches, fatigue, neuropathy. Had allergic reaction to Oxaliplatin on the 6th infusion. Only on Xeloda right now and will probably switch chemo after scan in Dec.
Advice for chemo: For the day of chemo, bring a lot to do, eat what you want, and be prepared for a long day.
Cyber knife? No
Radiation? No
CA19.9 trend during radiation:
Chemoembolization? No
Radioembolization? Yes, Y-90 Theraspheres in May 2012.
Experimental treatments? No
Any other conventional treatments? No
Alternative treatment? No
Use of supplements? No
Special diet? No
Complications during treatments? Allergic reaction to Oxaliplatin Oct. 2012.
What worked for nausea (best)? Compazine
Biggest regret: Not going to the doctor sooner.
Best advice given to me: From my social worker at U of M. I am allowed and entitled to be angry about being young and having cancer.
Best tip/idea/recommendation: Take Compazine with Xeloda instead of waiting to feel nauseous. Try not to waste your life sleeping in your bed all day. If you can, get out and enjoy your life!
What would you have done differently? When my hair started falling out, I would shave my head now instead of holding on to the sparse amount I had left. Looks terrible in pictures!
Current status: Taking Xeloda and CT scan on Dec. 4, 2012
Comments: I thought I would still be getting lots of attention, visitors, and gifts. Sad to say, most people forgot about me and only care about themselves. I now know I can only count on my family, my boyfriend, and a few close friends. You sure do find out who your true friends are.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

6 (edited by tryingtohelp Mon, 12 Nov 2012 19:47:06)

Re: Patients' Questionnaire (Summary)

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.

Re: Patients' Questionnaire (Summary)

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.

Re: Patients' Questionnaire (Summary)

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Patients' Questionnaire (Summary)

Marion;
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.

Re: Patients' Questionnaire (Summary)

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:

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

Re: Patients' Questionnaire (Summary)

Sharon,

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.

Re: Patients' Questionnaire (Summary)

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.

13 (edited by marions Wed, 05 Dec 2012 11:34:58)

Re: Patients' Questionnaire (Summary)

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.   
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Patients' Questionnaire (Summary)

Thought to revive this thread.   
Hugs,
Mar

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Patients' Questionnaire (Summary)

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!

16 (edited by marions Sat, 02 Feb 2013 23:13:20)

Re: Patients' Questionnaire (Summary)

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Patients' Questionnaire (Summary)

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.

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Patients' Questionnaire (Summary)

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 smile
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.

Re: Patients' Questionnaire (Summary)

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.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

20 (edited by thebompie4 Fri, 14 Jun 2013 17:21:43)

Re: Patients' Questionnaire (Summary)

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?
Radiation?
CA19.9 trend during radiation:
Chemoembolization?
Radioembolization?
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  smile
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
number!
Best tip/idea/recommendation:  Rest when tired.  Listen to your wife (ok I made that one up!) wink
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!

Re: Patients' Questionnaire (Summary)

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 smile

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.