Topic: Current and Upcoming Research and Treatment Opportunity for Cholangioc

Current and Upcoming Research and Treatment Opportunity for Cholangiocarcinoma Patients.

Recruiting Now - Dr. Cristina R. Ferrone is seeking 10 Cholangiocarcinoma patients for the following research study -

http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=1

(Protocol IDs, 09-131, P01CA021239, NCT00976898)

Upcoming Research Opportunity - Dr Cristina R. Ferrone will be conducting a New Intrahepatic Cholangiocarcinoma Clinical Trial.

Intrahepatic cholangiocarcinoma affect approximately 2000 people a year in the US. Many patients are not able to have an operation to remove the bile duct cancer.

Dr. Ferrone is preparing to enroll patients in a clinical trial which includes patients who can have an operation and those who cannot. Watch the Cholangiocarcinoma Foundation webinar featuring Dr. Ferrone discussing this clinic trial on our websites media page -

http://www.cholangiocarcinoma.org/media.htm

http://cholangiocarcinoma.org/email/2013/email.html

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Current and Upcoming Research and Treatment Opportunity for Cholangioc

Hi Gavin,

I watched Dr. Ferrone's presentation a while ago but the trial hadn't started up yet.  Thanks for letting us know it's now open and accepting participants.  I'm very interested in it but not sure I would be eligible due to previous traditional radiation.  Also, I'm scheduled to start SBRT on 5/8 and already have had my simulation for that along with having the fiducial markers (gold seeds) inserted in the tumor in my liver.  So I guess I have to do the SBRT and hope it's successful before I can look at other treatments?  I hope I made the right decision.  There's so much information I get from this website that it makes me wonder about my decisions sometimes.  I'm keeping a record of all I learn from you guys for possible future use.

Thanks again for all you do!

Mary

Re: Current and Upcoming Research and Treatment Opportunity for Cholangioc

Mary..... This is a difficult disease to treat and no magic bullet has been found as of yet however; treatment options are available and some provide excellent results. You have done everything right by informing yourself about this disease and making educated decisions while working with experienced physicians.
Also I would like to mention that the criteria for the above mentioned clinical trial is not very restrictive, as it requires disease nodules size and occurrence  limits fitting the parameters of the proton beam radiation machine and tumor biopsy. The later is required for all clinical trial participation.
I am not advocating for your enrollment in this trial rather I would like to point out that the path for treatment can be addressed in numerous way. Ultimately it is the physician helping you understand and guide you.  Please, don't doubt yourself. 


•Biopsy proven unresectable or locally recurrent hepatocellular cancer or intrahepatic cholangiocarcinoma. Patients with a single lesion must be 12cm or less in greatest dimension. For patients with two lesions, no lesion may be greater than 10cm in greatest dimension. For patients with three lesions, no lesion may be greater than 6cm in greatest dimension. Patients may have single or multinodular tumors (up to 3). There must be no evidence of extrahepatic tumor. Portal vein involvement or thrombosis is allowed.
•Participants must have measurable disease, defined as at least one lesion that can be accurately measured in at least one dimension (longest diameter to be recorded) as 20mm or greater with conventional techniques or as 10mm or greater with spiral CT scan.
•Patients may have had prior chemotherapy, targeted biological therapy, surgery, transarterial chemoembolization (TACE), radiofrequency ablation, or cryosurgery for their disease as long as it is greater than 4 weeks from first protocol radiation treatment (6 weeks for nitrosoureas or mitomycin C). Patients may not have had prior radiation to the affected area.
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: Current and Upcoming Research and Treatment Opportunity for Cholangioc

Hi Marion,

Thanks for the response.  I thought if you had any of the restrictions for the trial you would not be a candidate.  Because it said "Patients may not have had prior radiation to the affected area.", that made me ineligible.  I had prior radiation.  Also, I recently found out that my original tumor that was wrapped around my celiac trunk (with lymph nodes involved) and was "killed off" by radiation last year is now showing some activity again.  This is along with the tumor that is at the junction of my bile duct going into my liver and extending into the liver on both the right and left side of the bile duct in the liver.  So I'm wondering if all this might make me ineligible? 

Having said all this, I am doing fairly well.  I have never been jaundiced, no issues with dark urine or pale stools.  I do have some moderate abdominal and back pain which I have pain med for but have not used it yet.  Also, I have had to start eating smaller meals because if I try to eat a larger meal I get a lot of gas pain.  I also started noticing that I get tired a lot easier the last month.  I am starting to listen to my body and take it easy when I feel fatigued.

Marion, thanks again for taking the time to respond to my post and thank you for all you do for the Cholangiocarcinoma Foundation!!!

Mary

Re: Current and Upcoming Research and Treatment Opportunity for Cholangioc

Mary...yes, the prior radiation to the area would exclude your participation in this clinical trial.  It always is best though to contact the investigative center and forward the required clinical information.  Having said that, dear Mary, you are prepared and hopefully ready to go for the upcoming treatment scheduled with the physicians. 
Small meals, high in protein spread throughout the day work well.  You might also want to be careful with foods derived of a high fat content and ask the physician Creon (enzyme) and probiotic to aid with the digestion.  Try to stay a bit active also. 
Hugs to you,
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: Current and Upcoming Research and Treatment Opportunity for Cholangioc

Thanks Marion.  I do try to stay active by walking every day and using my stationary bike at home.  I've been trying to eat what they call "clean" foods which is foods at their most natural environment with little to no chemicals/pesticides.  I'm fortunate to live in an area where I have access to a lot of locally grown fruits and vegetables which is great for this time of year.  I eat mostly fruits, vegetables, beans and nuts - all in small portions so my digestive system doesn't act up!  I do eat some fish and a little chicken and once in awhile I get a craving for a good hamburger or steak so I go for it since the craving is not that often - was never a big meat eater anyway.  Hardest thing for me is staying away from chocolate!!!  I love my Hershey's Milk Chocolate Bars!!!

I will ask my doctor about the enzyme.  That could be the key to helping me with the digestion and gas issues.

Thanks,
Mary