Introduction / Welcome
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- This topic has 160 replies, 66 voices, and was last updated 2 years, 2 months ago by Kristenhall.
January 8, 2021 at 6:15 am #100761KristenhallModerator
I am sorry to hear of your CC diagnosis but also feel so comforted in the fact that you are so positive and having good success and treatment on your journey! I think that your positivity will serve you so well in the next few week and months as you continue. My favorite saying is, “you haven’t come this far to only come this far!” and with your positivity– you certainly have the right frame of mind to kick this cancer! Keep asking questions. Keep fighting for answers. Advocate for yourself. You’re doing all the right things. And most of all, stay close to our group. We are all here to support you and help you along the way.
Hugs and best of luck in your treatment!
KristenJanuary 7, 2021 at 3:56 pm #100757OdieSpectator
My name is Laurie and I’m new to this forum. I will give you a quick up-date on my journey so far with Cholangiocarcinoma.
I was diagnosed with Perihilar Cholangiocarcinoma in October, 2020. I had no symptoms whatsoever, but bloodwork done in August showed high liver enzymes. Between August and October I had an MRCP and 2 ERCP and the second ERCP showed positive for cholangiocarcinoma.
I had my surgery on October 21st at USC Keck by Dr. Kulkarni. (I was happy to see he was on the CCA Foundations list of surgeons.)
He originally thought he might be doing a left tri-seg, but once inside he felt my anatomy of my right posterior lobe was a bit small.
He ended up doing a central resection…This was also based on the pathology during the surgery which indicated negative margins on all ducts.
After surgery the staging with the more in-depth pathology showed my staging to be T2aN0M0. (Size of tumor was approximately 1.4 cm)
But also the more in-depth pathology unfortunately showed positive margin on the left, and small single focus on radial margin on right posterior. The doctor decided to go back in and remove the existing disease on the left.
I underwent a second resection on October 30th for a left lateral lobectomy. I now only have my posterior right lobe and bile duct…but it seems to be regenerating nicely. My liver enzymes were monitored daily in the hospital and were good, and they are continually going down.
I was in the hospital for a total of 19 days and went home on November 8th.
My at-home recovery is also going well. It has been 2 months post-surgery, and I am feeling fairly normal. The muscles-scar tissue around the incision are starting to bother me more, but I guess this is all part of the healing process.
The gross disease has been removed, but with the real possibility of microscopic cells remaining from the “single focus on the right radial margin” I will move to the next protocol of chemo and then radiation. (I believe even with clean margins there would have been a protocol of chemo as a precaution, but now with the positive radial margin, the protocol will be both chemo radiation.)
This is the protocol suggested:
4 months chemo and then 6 weeks radiation: Intravenous called GEMZAR in combination with the pill XELODA for 4 months, (2 weeks on and 1 week off) — Followed by a 6-week treatment of radiation along with the pill XELODA.
I started treatment on December 14, but my neutrophil white blood cell count dropped to 700 so the second infusion was postponed. I continued taking the oral Xeloda chemo, and then had a week off. This week I had my second infusion with a lower dosage, and hopefully my WBC will not drop again. I have had very little side effects from the chemo other than the WBC count, and being a little tired.
There will also be molecular profiling /genomic testing of the tumor removed, but for some reason this has been delayed and I have not had my results yet… I keep asking.
It has definitely been a scary journey, but I remain positive and determined to kick this disease. Even though such a large amount of my liver needed to be removed, I think I was diagnosed relatively early. I’d love to hear any feedback from anyone who is on this same journey.
I wish everyone all the best in fighting CCA and staying positive for a much brighter 2021.
October 6, 2020 at 4:36 am #100494
- This reply was modified 2 years, 2 months ago by Odie.
Hope you are well! Many thanks for your kind message as always. My mum indeed feels better, despite the fat that she still has an inflammation her body took the chemo very well, almost no side effects for the moment – obviously we know this can change in minutes.. but still remaining hopeful! She has now her third cycle and soon they should perform some examinations and scans to fin out what impact has the chemo had so far.
It is great to hear that there are really cases that underwent the surgery after taking chemo even if they were initially told the tumor is unresectable. Our oncologist told us as soon as she has the scans she will be the first one to consult it with the surgeon and the committee of surgeons, oncologist and gastrologists. As well there are some clinical trials available in Spain – immunotherapy + genomic therapy (dont know a lot about this, she just told us it is a targeted therapy but there is not a big chance of having this mutation). They told us my mum will be tested if she is a suitable candidate after she takes the chemotherapy (that this is a condition of both trials)
We are trying to remain positive and hope for good news however it is very hard, my mum is not the same as she was before, she is very depressed and cant cope with the disease. To be honest me neither… but I am trying to keep her up and keep telling that it is not over and she has to live the life not just survive. And that I a sure there is a possible way of treating this, the medicine keeps evolving and I just cant accept the fact that it is not curable. But you know how it is, when she opens the websites telling all the statistics and facts about this disease she loses all hope… This discussion board gave me hope and I can see a “light in the dark tunnel”.
Thank you I will read the story from vtkb right after.
MichaelaOctober 4, 2020 at 9:25 pm #100489
It is nice to hear from you. I hope your mother continues to feel better and recovers from her infection.
For patients whose cancer is confined to the liver and bile ducts, some patients do see the tumors retreat enough due to chemotherapy that surgery becomes possible. This is not a widespread result, but if your mother’s doctor says it is a possibility, then there is reason to hope for this outcome. Most of our patients in this position also get a surgical opinion from someone experienced with complex liver surgeries who may be able to give a more accurate picture than an oncologist.
If a recently diagnosed patient is told surgery is not possible, there is still reason for hope. Many patients see their cancer stabilized and brought under control with chemotherapy or other treatments. A typical outcome is that a patient will move from one treatment to another — when one loses effectiveness, another is tried. Often our patients are treated through clinical trials. Many patients maintain a decent quality of life even during treatment. The science is evolving and new treatments are in development. There are many reasons to stay hopeful and positive even with a difficult cancer diagnosis.
There have been several patients whose stories are posted on this board over the years who were able to have surgery after chemo. One I recall is Kathy, the spouse of a board member who posts as “vtkb.” Another is Lisa, the spouse of a board member posting as “mlayton.” I will look for others, and add them to this post.
Take care, regards, MaryOctober 4, 2020 at 4:21 am #100485
Very sorry to hear your story. I am in a very similar situation, my mum was diagnosed in April/May 2020 – the worst part was the information that it is unresectable. She has had a serious long lasting inflammation in her liver – hence for a long time could not undertake any treatment. The inflammation never was never really gone, but got much better and controlled hence we took the risk and now she is having her third cycle of chemo. Exactly as you said – I am not trying to find out how possible it is she can reach the point and be resectable however I would appreciate it if anybody who experienced this would give us a hope. Is there anybody who was initially told that the tumor is unresectable and after taking chemo it shrunk and became resectable? This is my only hope + of course some minor possibilities of taking other treatments such as immuno/genetic after finishing all the chemo cycles. I am trying to persuade myself that there is still hope of surgery so then I can support my mommy and persuade her as well.
I wish you good luck Ayhan and hope you share any news with us. I feel you, for me this is the hardest part of my 25-year long life. But the only thing we can do is to believe and hope cause this is the only way we can continue to LIVE and not just SURVIVE.
MichaelaOctober 2, 2020 at 11:51 am #100483AyhanSpectator
Thank you very much for your support. The last blood test showed that her CRP level and white blood cell count are high. They did additional blood tests and said that this is probably due to urinary tract infection. She is now on antibiotics and they will check the blood tests again for inflammation on Monday. If all goes well, they will start chemotherapy.
Our visits did not take very long unfortunately. It is a university hospital and they are trying to serve many patients. We asked around for alternatives and despite the time issue, this hospital still seems like the best option.
We asked what the treatment plan was. The doctor said they will start chemotherapy after solving the inflammation problem. Then, if the chemotherapy can shrink the tumors they will try surgery. I don’t know how optimistic that is. The largest tumor is about 8 centimeters and there are many small ones scattered on the liver (according to the PET scan report). There is also one small area under her right scapula which suggests bone metastasis.
I didn’t want to ask how probable that scenario is (being able to get a surgery after chemotherapy) because my mom seemed really hopeful there so I decided to focus on that and hope that it happens even if it is not very likely.
Our next visit is on Monday and I will ask what drugs they are planning on using (if it is Gem/Cis or something else) and if that is the best option.
Currently I am trying to get more information on nutrition, psychological support, possible disease progressions. I read and get lot of helpful information on the forum as well as on Cholangiocarcinoma Foundations’ website. Thanks again to all of you for this.October 2, 2020 at 10:55 am #100482KristenhallModerator
Welcome to our discussion boards! I am so very sorry to learn of your mother’s new CC diagnosis. My father, too, has unresectable cholangiocarcinoma. I know how hard and scary this time is! I am sure you have questions swirling around your head. You have come to the right place! We are all here to help you and support you in your new roll as a caregiver and advocate for your Mom.
May I ask how her first appointment went? Were you able to be at the appointment with her? Were your questions answered by the doctors? I hope you were able to find some guidance as you begin this new journey.
My father was diagnosed in 2017 with CC. It took us some time to come to terms with his diagnosis and wrap our brains around what was happening. It’s an uncertain time for your family….but as I said, you’ve come to the right place. We are all one family here- there is nothing we can’t see each other through. From one caregiver to another, I wish you strength and patience to find answers.
Please keep in touch and keep us posted!
My thoughts are with you,
KristenSeptember 29, 2020 at 1:13 pm #100471AyhanSpectator
My mom (64y) has recently been diagnosed with cholangiocarcinoma, unresectable. Tomorrow will be our first meeting with her oncologist after the biopsy results. She will probably start receiving chemotherapy.
I am very sad and scared. I am doing my best to support her and be strong for her. I’ve been reading your experiences and just wanted to thank you and say hi because it becomes a little bit less overwhelming when you see people having similar experiences with you.
AyhanSeptember 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 #100441SheritSpectator
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.
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