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

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

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