Tagged: Our story ...
September 20, 2020 at 8:20 am #100442
Welcome to our community. I am sorry that you received this diagnosis, but you are in excellent hands being treated by a major cancer hospital with deep expertise in our rare cancer.
Many of our patients are blindsided by this diagnosis, which can be disorienting at first, as a cancer no one has heard of. I know the feeling – I had a grapefruit sized tumor in my liver with no symptoms and nothing amiss in the usual blood tests performed for a physical a few months earlier. My own cancer was found when I saw my GP for something unrelated and it took several weeks for the diagnosis to sink in. This is a common experience for our patients. One way to get past the shock is to learn about this cancer from reliable sources of information. There are many good resources for patients and caregivers on the Cholangiocarcinoma Foundation website, which is a great starting point for this journey.
Important guidance for recently diagnosed patients includes getting a surgical opinion if your cancer has not spread from the liver and bile ducts. I don’t know if this is your case, but something you can ask your doctors about. A tumor that looks inoperable to a nonspecialist may yield a different opinion from a skilled liver surgeon. And, as you mentioned, it is important to have genomic testing to see if your cancer has mutations for which there are targeted treatments.
While this is a difficult cancer, there are reasons for optimism. You are receiving state-of-the-art medical advice. You came into this in general good health, which means doctors can move aggressively to treat the cancer. You will benefit from the many recent medical advances we are seeing in terms of there being more treatment options than even a few years ago.
Please stay in touch with us and let us know how your treatment is going. When patients post their stories, this is immensely valuable for others facing the same diagnosis. Learning you have cancer can be an isolating experience — but it can also bring families and friends closer, plus there is a community here to accompany you on this journey none of us expected.
Take care, regards, MarySeptember 19, 2020 at 11:58 am #100441SheritParticipant
Hi there. I’m new here, and newly diagnosed with stage 3 cholangiocarcinoma. I’m 54, married for 32 years, with two grown children, and three grandlittles.
My journey began on Aug 14; two days after I returned from my mom’s funeral. I had gone to my chiropractor that Fri for an adjustment and massage. Later that day I began having pain/pressure just below my breastbone, and it was difficult/painful to take in a full breath. My first thought was that the adjustment was a little off (I’ve had dislocated ribs in the past, and it kinda felt like that). I monitored my symptoms over the weekend, and was beginning to feel better by Mon, so I thought nothing more of it.
That next Fri, I had a follow-up adjustment/massage. Later that day, the breathing problem/pain returned. In the wee hours of Sun, Aug 23, I finally had my husband take me to the ER because it was becoming so uncomfortable and painful. They did a CT scan and immediately admitted me because there was a large mass on my liver.
I was in the hospital for 2.5 days, during which time they did an MRI, blood tests, and a liver biopsy. A week after going home, I received my diagnosis.
Previous to this, I had no other symptoms aside from occasional, mild stomach aches. I also don’t have any of the normal risk factors for cholangiocarcinoma except being 80 lbs overweight (well, about 50 lbs over as of today…). I do have an autoimmune disorder (Hashimoto’s) but that, as I understand things, doesn’t constitute a risk factor. In Feb this year, I started an elimination diet to manage the Hashimoto’s symptoms, and have lost 30 lbs since Feb. I don’t attribute the weight loss to the cholangio, as I’ve done this elimination diet previously and had the same results: 25 lb weight loss by eliminating gluten, sugar, soy, dairy, and junk.
Currently, none of the breathing problems have returned. All I’m experiencing is occasional abdominal pain, mild nausea, and pressure/pain in the area of my right kidney. I’m told this could have to do with the size of the tumor, putting pressure on the kidney.
I’ve been fortunate to live about 4 hours from MD Anderson, and will be receiving my treatment through them. My oncologist used to head the international cholangiocarcinoma research network and the medical advisory board to the cholangiocarcinoma foundation, so there’s that to be thankful for, too. 🙂
He wants me to begin chemo within the next 14 days. If insurance approves, I will be participating in a clinical study. If not, then standard chemo. He is also going to order further genetic testing to see if targeted therapy and/or immunotherapy are options.
Right now I’m on an emotional roller-coaster. I’m trying to remain optimistic that we can beat this. I’m overwhelmed with trying to learn and understand all of this new information. And yes, I’m a little scared…but when the fear kicks in, I do my best to focus my mind on other things.
I appreciate you approving me for this group, and I hope to make this part of my support network.August 17, 2020 at 2:17 pm #100359
thank you very much for all the important information you gave me in only two messages. I will check it all and for sure we will ask about the molecular testing again.
I was also wondering if there is anybody who was told the tumor is not resecable at the moment, was given the Chemo and after that the surgery was possible? The doctor was honest with us and told us the possibility is very small but I believe everybody is an individual and also the chemo has a different impact so I still try to believe we could possibly reach that point. Any similar experience shared here would be appreciated.
Thank you again.August 15, 2020 at 10:23 am #100358
Thank you for your note.
I asked if your mum is in Spain because the Cholangiocarcinoma Foundation held its annual conference a few weeks ago and some of the expert presenters were from Spain. You can find videos of their presentations on the Foundation website. It appears, as you mention, that there is good expertise on our rare cancer where you are located.
It was also good to hear your mum has discussed biomarker testing (also called molecular profiling) with her doctor. Patients should ask about the testing if their doctors do not mention this option. The Foundation has a nice video, also available in Spanish, about biomarker testing which can also be found on the website. I will add the link at the bottom of this message for any readers who have not yet seen this important (and very watchable) video. Because our cancer is so rare, our patients can really benefit if their cancer has a mutation for which there are specific treatments. Sometimes the treatments are for other cancers that share the same mutation.
I am not a doctor so cannot give medical advice. I can note that for some patients whose cancer has not spread and is only present in the liver and bile ducts, there may be additional treatments that can be considered. Some patients are able to have “localized” therapies which deliver chemo or radiation directly to the tumors, as compared to a “systemic” treatment like traditional chemotherapy which treats the cancer throughout the whole body. Your mum may wish to ask her doctor if there are any localized treatments that might be considered at some point for her.
Take care, regards, Mary
Here is the link to the video: https://cholangiocarcinoma.org/mutationsmatter/patients-portal/August 15, 2020 at 7:45 am #100350
thank you very much for your kind message. Regarding the genetic testing – our doctor mentioned it to us but she said first the chemo needs to be given and then they can do the tests.. do you please know if this is something they do automatically or do we need to request it additionally?
My mum is treated in Spain and we have been very lucky cause the health care here is really amazing and our oncologist has experience exactly in the field of bile duct cancer, moreover she is a reasercher as well in this topic. Fortunately the cancer is only in her bile ducts now, they did not confirm the metastasis. Is this a better sign?
I keep telling my mum the stories from this discussion and encouraging her everyday. I am glad I found this foundation and appreciate a lot to be part of it.
thank you once again, take a great care!
michaelaAugust 14, 2020 at 12:30 pm #100349
A warm welcome to our community. I am sorry to hear of your mother’s diagnosis and that she is struggling with infections. She is a person of great heart and courage, from what you have described, and certainly she very much values the support you give her.
This is a difficult cancer, but the good news is the science is evolving rapidly and there are many more treatment options than was the case a few years ago. It is important to have doctors with experience with cholangiocarcinoma because this cancer is rare and complex, and it is also important to have biomarker testing (also called genomic or molecular profiling) because your mother’s cancer may involve a genomic mutation for which there is a new treatment or one available through clinical trials. Infections are not uncommon for our patients and can be hard to bring under control – it sounds from what you describe that her infection is slowly resolving. I hope your mother continues to feel better.
Is your mother being treated in Spain or Slovakia? Has her cancer spread beyond the liver and bile ducts?
I hope our community can be a source of comfort and information for you and your mother. Please look through the resources available for patients and caregivers on the Cholangiocarcinoma Foundation website and please send any questions our way.
Take care, regards, MaryAugust 13, 2020 at 3:31 pm #100347
Thank you very much for approving my application to become a part of this community.
My name is Michaela, 25years old, from Slovakia, living currently in Spain and unfortunately the story with cholangiocarcinoma began for us (my mum) this year in February/March. My mum is 53 years old, full of live and the best person in this world for me. In february she got only one of the symptoms – jaundice. We were afraid she got hepatitis, that time however we did not know how happy we would be if it was true.. all the examinations, placing the stent, months in hospitals, neverending story until the final diagnosis came around 2 months ago – Klatskin tumor IV not resecable, max one year of life..moreover she almost died from sepsis caused by huge inflammation + abscesses of the liver which is btw still present.. hence she was not able to get any of the treatments.. now she is still on antibiotics, the inflammation is much better however still not gone.. please, has anybody had the same/similar experience when the inflammation even after some months of antibiotics, months in a hospital is still present? They gave her first chemoterapy this monday but warned us it can have fatal consequences.. but she got a choice – either waits but then maybe no cure at all or she takes a risk, starts chemo and if her body takes it well maybe it will open the door for some possible other treatments, trials, or maybe but really only MAYBE surgery … i cant describe how proud of her I am that she was so brave and wants to fight.. so this is my story very briefly.. the reason I applied to be part of this community is that I feel really desperate I think I dont have to explain it to all of you, cause I am sure I am not the only one.. I love her so much she means a world to me. And I would do anything to help her and that she is here for many more years. I would like to know if any of you have/had similar experience and maybe can give us more hope that there is still a chance to not only prolong her life but a chance of having our life back again amd overcome this horrible disease? To be honest I spent around 3 evenings reading the stories here and I have to say it gave me so much hope and energy that I simply wanted to be part of this discussion and gain even more of it. Thank you.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.
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