mcwgoat

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

Honeyz1,

Please accept my condolences on the loss of your dad. I will keep you, your mom and your sister in my prayers. As time passes, I hope you will be able to recall the happy times with your dad and family and find some solace in those memories.

Peace,
Mary

Hi Percy,

I can imagine how the research can be depressing. You delve so much more deeply than I do into this disease and I find it difficult at times. It sometimes makes me feel so hopeless. That’s when I pull back a bit and try to regain my positivity. It is difficult – so I thank you again for your perseverance. This website, and all the people on it, have helped me immensely. I’ve learned so much from all of you and it has helped me with questions for my doctors.

I keep asking my doctor about surgery since I hear that is the best chance of long term survival. But I keep being told because the tumor is on the left and right side of my bile duct in my liver, and also at the junction point where the bile duct leads into the liver and also because lymph nodes were involved, that I am not a candidate for surgery. But I will keep asking that question as I continue other treatment.

As I mentioned in an earlier post, I am being treated at Memorial Sloan Kettering in NYC. I am considering sending all my records to Dr. Kato at NY Presbyterian for a surgical opinion. I don’t want to do that until I complete the SBRT next month.

Again, thank you all for the informative information on this website. It is invaluable for all of us dealing with this disease.

Mary

Thanks for the clarification Percy. I’m excited to start SBRT and see some positive results!!! You are full of so much useful information on this disease. Your posts have helped me understand a lot more clearly.

Thank you again,
Mary

Hi Percy,

Thanks for this info. I’m guessing it applies to SBRT also? I’m starting that next month. Surgery is not an option for me so it was good to see this study where there were some positives outcomes for radiotherapy.

Mary