June 13, 2020 at 8:44 am #100168
Welcome to our community but I am sorry to learn about your mother-in-law’s diagnosis and that her doctors are having difficulty getting her bilirubin level down. This cancer can be difficult to diagnose and treat, and for some patients it takes a few rounds with stenting and drainage steps for the bile duct blockages to be resolved. This must be really frustrating because I imagine your mother-in-law is anxious to get past the infections and start treatment.
Is your mother-in-law being treated at a medical center with experience with our rare cancer? If not, your family might consider seeking a second opinion from a major cancer center with doctors specialized in cholangiocarcinoma.
I hope you have found the patient and caregiver resources on the Cholangiocarcinoma Foundation website, which include a tool to help identify experienced doctors in your area. One area to look at, if you have not already done so, is the information on molecular (genomic) testing – “Mutations Matter” – which explains the benefits of the testing in terms of opening the door to new treatments and clinical trials.
This diagnosis, as with any rare disease, can be unsettling, but please know there is a community here to lend support and help answer any questions.
Take care, regards, MaryJune 12, 2020 at 7:10 pm #100167DazzleParticipant
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 doMarch 12, 2020 at 6:42 am #99897
A warm welcome to our community but I am sorry to hear that your significant other has been diagnosed with our rare cancer. I hope you have been able to also look at the many resources for patients and caregivers on the Cholangiocarcinoma Foundation website. While this (or any) cancer can be challenging to navigate, the good news is that the science for us is evolving rapidly and there are many new treatments in development and in testing.
Please do let us know from time to time how things are going and send any questions our way.
An additional note – Our annual conference is coming up soon. Due to Coronavirus precautions, the conference this year will be held virtually so everyone interested can register and join in from home. There is one day devoted to patients and caregivers – the first time I attended the conference, it was also the first time I met other people with cholangiocarcinoma even after more than a year of dealing with this cancer. Meeting others was so uplifting, so I encourage checking the Foundation website for details if you’d like the opportunity to interact with others in our community.
Regards, MaryMarch 10, 2020 at 9:41 pm #99892Nc29momParticipant
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. MelissaFebruary 21, 2020 at 9:30 pm #99819
Welcome to our community. It is great that you found us and to hear that the information and patient stories here have been helpful for you and your father. I am sorry to learn that his cancer has spread and hope that his medical care is helping him to maintain a good quality of life.
The discussion board is sponsored by the Cholangiocarcinoma Foundation. If you have not yet discovered the Foundation’s website, just click on CCF Main Page above to learn more about the Foundation’s work. There is also much information on cholangiocarcinoma available for patients and caregivers.
Please stay in touch and send any questions our way. As you mentioned, there are many different ways that we experience this difficult cancer, but the experience is a little easier knowing none of us walks this path alone.
Regards, MaryFebruary 19, 2020 at 10:22 pm #99811Myfathersdaughter1Participant
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.January 11, 2020 at 7:30 pm #99555
Thank you for introducing yourself. What a story! I appreciate your words of encouragement and fully agree that a cancer diagnosis becomes a path to follow. Your path, while having some bumps, twists and turns, has been a good one so far. I hope your doctors can find a long-lasting solution to the bile drainage concerns you mention.
Best wishes and please stay in touch. Regards, MaryJanuary 9, 2020 at 3:43 pm #99543BackonmyfeetagainParticipant
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.December 23, 2019 at 6:16 pm #99471vtkbParticipant
https://www.cancertreatmentsresearch.com/community/immunotherapy/dr-williams-clinic/ This had a patient perspective thread with a patient (meech) who had a similar cancer to cholangiocarcinoma. Not sure if reading the thread will give you the answers you seek.
There is a clinical trial now recruiting that wants to combine intratumoral chemo (cisplatin/vinblastine) and immunotherapy in some centers in the US- that may be an alternative to what you suggested with Dr. William’s Clinic.
Good luck in your journeyDecember 20, 2019 at 10:19 pm #99462HarrypennyParticipant
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.December 10, 2019 at 8:28 pm #99415
It is nice to meet you and thank you for sharing your story.
Quite a few of our patients report platelet issues while undergoing chemo. When the chemo is delivered in a typical schedule (e.g., a three week cycle with two chemo weeks and one recovery week), generally blood counts bounce back enough for the next cycle. When they don’t, patients report the next cycle may be delayed or the dose reduced.
Your case of course is different because your chemo from what I understand is being delivered in smaller doses over longer cycles. I looked around the discussion board and found just one case from about ten years ago of another cholangiocarcinoma patient who was treated with IPT and the lower dosing. I also looked around the medical literature and did not see any studies or clinical trials for this treatment approach with our patients.
We have seen reports of patients whose platelet issues were more severe. One patient reported being sent for a dietary consult. In other cases, doctors were concerned about the functioning of the patient’s spleen or whether the cancer was affecting either the spleen or bone marrow. Not being a medical person, this information is being shared as some thoughts about questions you might ask your doctor.
Because our cancer is rare and difficult to treat, I was wondering if your doctor is specialized in cholangiocarcinoma. It can be hard to find a doctor who has seen more than a few cholangiocarcinoma patients. (I used to ask my doctors how many patients like me they had treated. One said, “um, you know your cancer is really rare.” Another doctor told me he had just treated a few cholangiocarcinoma patients across his entire career.) The Cholangiocarcinoma Foundation website has a provider map page that can help you identify doctors and facilities in your area (if you are in the U.S.) who see a high volume of cholangiocarcinoma patients, in case you are looking for a second opinion. The map includes oncologists, radiologists and surgeons.
There are options for patients who cannot tolerate chemo. There are new treatments in testing that are targeted to specific genomic defects present in some of our patients. You can search for clinical trials at clinicaltrials.gov or your doctor may be able to help. These treatments may be better tolerated. Also, radiation options are becoming more and more sophisticated.
I was wondering if your platelets recovered once your chemo was paused. I hope so, and that your doctors can find a new round of treatment for you. Please stay in touch.
Regards, MaryDecember 9, 2019 at 4:24 pm #99407HarrypennyParticipant
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.September 7, 2019 at 6:10 pm #99052
Welcome to our community. Congratulations on getting through surgery with a good result.
Restarting chemo is something to address with your doctor, who may have qualms given your prior bad reaction to the xeloda. Adjuvant treatment after surgery is generally started as soon as the patient recovers as it is intended to mop up any stray cancer cells, especially cancer cells that may have been released via surgery or in conjunction with wound healing. I am not a doctor, but my understanding is adjuvant treatments risk becoming less effective the longer after the date of surgery. Typically, adjuvant treatment would start about 6-8 weeks after surgery and no later than 12 weeks after. The BILCAP clinical trial that tested the effectiveness of post-surgery xeloda, for example, accepted patients up to twelve weeks after surgery.
Since you did have some xeloda, hopefully there was benefit even though you stopped early. Your doctor can advise if any additional treatment is advisable at this time. With a clean surgery of a single tumor with no lymph node involvement, your results are positive and hopefully the October scan will bring good news.
Every cancer patient I have met, myself included, endures an anxiety freak-out when facing a scan. There are articles on some of the cancer association websites with tips on handling the anxiety. My own approach is to limit my “scanxiety” to a couple of specified days (e.g., the two days before the scan) and ban myself from worrying about it otherwise. This sometimes sort of works, at least for me.
Regards, MarySeptember 6, 2019 at 6:40 pm #99049HyprtyprParticipant
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.
JoslynAugust 13, 2019 at 3:12 pm #98970
Welcome to our community. I like your user name, and also hope that your sister feels better.
Cholangiocarcinoma has few symptoms in the early stages, and for many of us it is discovered when we are treated for something unrelated. In your sister’s case, from what you describe, the cancer revealed itself with your sister’s pregnancy. As difficult as that was, the earlier this cancer is found and treated, the better for the patient. It sounds like your sister’s doctors have figured out a treatment plan for her.
There is a lot of good information for patients and caregivers on this discussion board, and on the website of the Cholangiocarcinoma Foundation. Please send any questions you have. We are patients and caregivers so cannot give medical advice, but have a great collective experience coping with this rare cancer that may be of help to you and your sister.
Take care, regards, Mary
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