Introduction / Welcome

Hi. I am Michelle. My mother in law was Diagnosed April 18th 2020. She is stage 4 metastasized to her liver and lymph nodes. She has a biliary catheter and a plastic stent(not really working). Her bilirubin is still high. Its at 6.9 and needs to less than 2.5 to start folfox. She has not gone more than 10 days off antibiotics without getting another infection. Not sure what to do

Hi I am the significant other of a newly diagnosed Stage III Intrahepatic Cholangiocarcinoma cancer patient. Hes 63. This has been so overwhelming, especially in determining who is the best doctor to see and what is the best treatment. This site has been a tremendous help, and I just want to thank all those who contribute their experiences and information. In the few weeks I’ve even been aware of this cancer, I’ve learned more from this site and survivor stories than I have from our doctor. I hope to post often, as this is a journey I am sure I will need help through. Lots of prayers to all of you. Melissa

Hello, there. After reading these forums for several months, I wanted to start a thread and figured it would be good for me to introduce myself. My friends call me J. My dad was diagnosed in October of 2018. He is stage 4 and inoperable. He also has cancer in his kidney and his bones, in over 10 different places.

I have learned a lot about this type of cancer in the past year or so and it’s crazy how everyone’s stories are so different and how it impacts everyone in such different ways. Thanks to whomever created this outlet and a supportive community for those impacted by this terrible cancer.

My name is Bob. I was diagnosed with cholangiocarcinoma in September 2018. As of today (09.01.2020), I am “cancer-clean” but humble enough to say that I am not “out of the woods.” Here is a condensation of my story: I was fortunate that my symptoms flashed in dramatic fashion.  One day, I was hiking and felt a little tired – with a little acid reflex; the next day, I noticed that my urine was tea-colored and my stools clay-colored and “frothy.” Over the next week, I began to itch all over; my eyes looked yellow and I even experienced hallucinations. I was initially directed to gall bladder surgery – by a doctor who had been distracted by some gall stones – when another surgeon listened to the totality of complaints and recommended an immediate CT scan. The scan results correctly confirmed the existence of a tumor and I underwent an ERCP procedure to install stents in my bile ducts and release the backed up bile an bilirubin. Unfortunately, the procedure irritated the pancreas (pancreatitis) and I was sent back to the hospital for three days to ease my pain/discomfort and give my pancreas a chance to chill out. My oncologist was generous in helping me track down a surgeon who was experienced in resecting tumors such as mine; my wife and I also sought out a referral service (Pinnacle Care) that looked over my medical records and recommended three surgeons on the West Coast to whom I could apply. We flew to UCSF in San Francisco and met with “our” surgeon for an hour. That interview was important in that we were able to have an understanding of what my particular surgery would entail and the surgeon was able to assess my fitness for a successful outcome. Again, I was fortunate: my tumor appeared to be operable, I was “fit” enough to endure surgery, I found the right guy, and my wife was a strong and supportive advocate (I call her my “Warrior Empress.”)

The surgery was “successful” in that the tumor was completely resected, with clear margins, and 28/28 lymph notes clean. The surgeon had to take a two-hour detour to remove every small strand of the metal stent that had been inserted during my ERCP (plastic should have been used.) The Whipple surgery was also successful: my belly was restructured and I was Good-to-Go. I followed the advice to undergo a regimen of eight three-week cycles of oral chem (Xenoba), just to be on the safe side. My chemo experience was much like a cloud inversion in the mountain valley where I live: rise up above the cloud and you can find a beautiful day. Doing so took effort and determination, but I am humble in recognizing that the oral medication was not like the chemo-blast that other types of cancer require and proud enough to recognize my own inner strength and will.

I completed my chemotherapy eight months ago. I have had a PET scan and several CT scans; my bloodwork has indicated no return of cancer in my body. On several occasions, I have had a high fever and elevated levels of bilirubin that we suspect have been the result of bile backing up into my liver. Consequently, last month I had an ERCP procedure to dilate two of the bile ducts in the liver and to drain the “sludge.” Several other ducts within the liver are now closed, which raises the question of how the bile can exit the liver and if pars of my liver will atrophy. My surgeon will contact me in February to let me know where to go from here.  My overall health has been relatively “good”: my weight is about where it was a year ago (up to 155 and now down to 146) but I am regaining strength. I walk and or hit the gym daily. I do experience back pain, (possibly due to coughing my way out of a bout with pneumonia), but I will have an MRI and a visit to the back specialist to see what to do next.

I have come to see my cholangiocarcinoma experience as the path that I am on during this phase of my life. I could have reached the fork in the trail that led to palliative care, but instead I’m on the “path to I-don’t-know-where.” I mentioned this to an eighty-year old friend (I’m 73); he laughed and said, “We all are.” I find his humor soothing.  I would like to hear from others who have had Whipple surgery to hear how things have held up. I’ll find out about the back pain. In the meantime, I’ll keep on trucking – inspired by all the other cancer warriors who are on their own trails but whose paths so frequently intersect. We are a strong, courageous, and sharing group. We are not alone.

Hi Mary

Yes, I’ve used the CCF specialist map quite a bit.   My onocologist is integrative and has had cholangio patients prior to me.
He’s integrative so a bit different from conventional in that the immune system is protected and stimulated.  That isn’t to say that the program was too much for my body to manage.  My platelets have recovered.  It’s taken nearly 6weeks for them to get above 100 and my blood counts are still low but there is progress.   I’m anxious to get back to treatment however.

All of the surgeons and conventional oncologists that I am consulting with actually came as recommendations from cholangio patients.
Dr Fung and Dr Liao from Chicago University; Dr. He with John Hopkins; Dr. Jarnagan at MSKCC and Dr. Kato with Columbia in NYC.

I have a face to face consult with Fung/Liao on 12/23 and am working to schedule with the other surgeons.   I’m not yet  convinced that I’m not a surgical candidate so we are getting as many second opinions as possible.

If surgery isn’t yet possible, I’m pushing for alternative treatments.  Has anyone experienced or heard of the Williams Cancer Institute?
I’m trying to find patients who have done his program.  Dr Williams is an interventional radiologist who performs intra-tumoral immunology with a 65% complete response rate.  He only performs the treatment in Mexico given one of the agents he uses isn’t FDA approved in the US.  I had a consult with him which was very knowledgeable but I’m needing additional information from a patient before I could make a decision.

I have been reading these posts for a while and thought to introduce myself.   I’m Caroline. 58 years old and diagnosed with ICC in April 2019.   I have a large mass in the center of my liver with two lymph nodes – one in abdomen and one in my chest.  I have done 16 weeks of IPT chemo (low dose metronomic chemo) with good results after the first 4-weeks.  After that, I got thromobocytopenia and had to  start/stop/pause both the second and third 4-week programs. My Onc has never had a patient that couldn’t do low dose and their platelets not recover.  Currently, my CA19-9 is increasing.  I’m off chemo trying to find a surgeon who will say yes to surgery but have had no success with 2 so far.  Y-90 was recommended by one but the other (whom I trust more) said the benefit of Y90 would not outweigh the risk.  I’m not a surgical candidate until I can get the disease under control.  I was showing improvement in September but a break in the chemo and my numbers started to rise.  This last round not only had to be stopped, it really didn’t have any effect Gem/Cis/Abraxane.  Its really disconcerting when I’m told I need to get back into chemo and I’m not sure if my bone marrow will take it – low dose or conventional.
Has anyone had a similar situation?  I believe the diagnosis but refuse to believe the prognosis.  There are so many cholangiocarcinoma survivors.  I simply refuse to accept that this cancer is going to win.

Hello. I am newly diagnosed (May 2019), 66-year-old female. Had surgery in June, clear margins, no lymph involvement, only 1 mass 9.3 cm in size. Oncologist started me on Xeloda for 6 months. Only got 1st round finished before cardiotoxicity put me in hospital. He has stopped everything and we are doing watchful waiting. First scan in October. Very difficult for me to be calm about this. I feel like I need to be doing some sort of treatment and am contemplating consulting a cardio-oncologist in hopes my heart can be protected medicinally while restarting Xeloda. Has anyone had a similar situation who is willing to enlighten me on outcome? Thank you in advance for any info. Prayers for everyone.

Joslyn