New Member

Faith

It was very encouraging to read your post. We all need to have the hope and faith that you have.

After having an unsuccessful resection in December of 2011, I am now waiting to see a specialist in Toronto in 2 weeks. I have been doing quite well with the Xeloda/Gemcitabine treatments. I am starting round 15 on Wednesday. The tumor and lesions are all shrinking slowly.

I am hopeful for good news when I go to Toronto.

Thank you for the encouraging words. Good luck to you.

HUGS! Laura

Hello Everyone, I’m a new member as well, my name is Faith. I was first diagnosed 11/2/11 and was seeing a hematologist/oncologist because my body wasn’t absorbing the iron I was intaking. I had 2 blood transfusions and an infusion of Feraheme in August 2011 and was told than I didn’t have cancer but after the treatment I was then diagnosed with cc. I had a hole put in my chest to drain my liver and they don’t use anesthesia for this procedure they stab at your liver until they find an open bile duct. I had a tumor blocking my bilary tree and the doctor started me on Gemzar and it reduced my tumor to where I was able to receive a stent in my tree and lose the bag outside my body. Gemzar quit working so the doctor put me on Xeloda which made me feel awful every day. I went for a second opinion because I got tired of hearing I had lived longer than they expected me to and found a great oncologist who put me on oxaliplatin and 5-FU. I work for several epidiologists and medical doctors and so I have a doctor at work to whom I’m able to bounce things off of and she has been diagnosed with breast cancer 2 years ago. My cancer markers went from 1925 to 28. I see her every week rather I get treatment or not to make sure my body is on track to receive treatment. My past 2 visits my liver phosphates are up to 175 and so I go for an ultrasound on Monday. I get CT scans about every 4 months and I get my stent replaced about every 3 1/2 to 4 months. My cancer is treatable but not curable. My cancer has also metatized to my lungs. Back in November 2012 my liver specialist told me my cancer is slow progressing and he didn’t see why I wouldn’t live to be 80 provided I continue to response to treatment. I hope my story helps others because this disease doesn’t care who it effects and how fast it decides to grow. If I can help one person I am doing well. I’m doing well so far and I’ve learned pain is part of my life so hang in there whoever reads this and Thank you.

Let us know how your consultation goes. Everyone here believes in second opinions with this complicated disease. In 2011, after I was put on palliative care and told they would not do surgery, folks on this board urged my wife to get a second opinion at USC. Within days I was in surgery.

Best wishes, Mark

Hi,

I think Dr. El-Khoueiry will be a good consult for you. He specializes in biliary cancers and has done significant research in the area. I recall that several people on this board have been treated by him.

I know that your mom is trying to recover from a cholesyctectomy, but the big initial question is whether she might qualify for surgery. With this cancwr, that offers the best chance for more time with good health.

I hope you get the answers you need.

Take care, Mark

Hello… So sorry to hear about your Mom. My Mom passed from it and my brother has it. My brother was also sent to USC which did not end up being his place of treatment. However on the other hand my Mom was treated by Dr Youram Nassir out of Los Angeles. He is absolutely one of the best doctors as far as bile duct and the care and dedication from this doctor is unreal. Again so sorry.

Hi Bnanagirl,

I’m truly sorry to hear about your mother. I too have had ulcerative colitis since age 16, now 53, and I now know that it is a risk factor for cc.

I live in SoCal, and as this has evolved, have been seen at a number of community hospitals, UCLA, and USC. As a patient, my opinion (and that of my primary care doctor) is that USC is currently the best place in the the LA area for treatment of this disease. I have been in treatment there for 16 months. If I may ask, who are you seeing initially? Do they have your mother’s previous records? Yes, it sounds like you need many questions answered. There are a number of good people at Keck who are very familiar with cc, and should be able to give you more thorough answers.

I know my way around USC. If I can be helpful, please let me know.

mparsons59@gmail.com

Best wishes, Mark

Hi Bananagirl, I too am a new member. I would first ask what kind of CC. There are 3 different kinds. It seems from the 3 opinions we got, they all agree that gem/some kind of “platin” are the #1 chemo drugs to start with. I was told that 50% of CC patients respond to them well. My husband unfortunately did not but is on Xeloda which is an 5-FU drug (there are many different names). He also was not a surgery candidate. Stage 4 CC. READ everything you can about this disease. Knowledge helps and going to the appointment with an ipad or notebook to keep track of all that is discussed. I also keep a daily log of how my husband is feeling, his weight, schedule for meds. This is very helpful mostly when you go for other opinions. I would go to the largest/best reputation cancer center that is reachable. This website has helped me emotionally and medically. Good luck. Susan

Dear Bananagirl, welcome to our remarkable family but sorry you had to find us. You are already doing the best and right thing by getting another opinion. We just don’t give up around here! Of course there is HOPE, just read our posts, HOPE is our middle name. You will feel better when you get that second opinion and a game plan is set in to place. In the meantime, try to read up on CC as knowledge is the best tool we have for fighting it. I know others will be chiming in as you have come to the right place. Please keep us posted on Mom’s progress as we truly care.