April 13, 2018 at 10:56 pm #96835
I was looking at your message and it reminded me of the experiences of many long-term CCA survivors. Often they follow the same pattern as your mother where CCA becomes a chronic illness with different phases of treatment, not just chemo but also follow-up surgeries, or radiation or other local treatments, punctuating periods of feeling well. Some patients participate in one or more clinical trials. Like your mother, they are always thinking ahead for the next treatment. It was uplifting to read about your mother’s story, how she enjoys her life despite any bumps in the road. Your observation that we must not let this cancer take over our lives is spot on. Thank you for sharing her story.
Regards, MaryMarch 14, 2018 at 11:38 am #96729michaelParticipant
I’m so sorry for the news. I, like all of us here, understand how that feels. My mother has been fighting this since Nov. of 2013. Though its been a bumpy road, she’s still here and over that time she’s taken trips to Norway, Aruba, Hawaii, and lots of weekend trips to B&B’s. She’s enjoyed birthdays and holidays. My point is, your father may go through some really hard times, but he can still live his life! You can too! After 4 years my family and I, although still scared, have learned to manage day by day. Of course Mom has missed out on things and had to make sacrifices, but thats just the way it is. Stay positive and try not to get too consumed by research and family discussion about this. Trust me, it’s important not to let your life be taken over by the cancer in a cerebral way. How ever much time my mother and your father have left, we want to remember them as our parents. Not a patient with cancer. I really hope I’m wording that properly and it makes since. So, on to my expertise. Is it intrahepatic or extrahepatic? That can make a difference in being a candidate for a transplant. In my experience (intrahepatic) it’s a waste of energy to think about. Local surgery has always been advised when possible. Though, for my Mom it has come back every time (3 surgeries). We also have tried microwave abelsion. Much less intense procedure than surgery. She experienced some pain, but in was an out-patient procedure. However, our experience with abelsion never really worked. Both times a tumor appeared in the exact same place on her next MRI. The only systemic treatment we tried was chemo (Gemzar & Cisplatin), as a preventative treatment (no tumors present at the time). But several months later, it was back. Recently we tried SBRT beam radiation. Although the initial CT scan showed a significant reduction in both tumors, the follow up MRI showed that only one had reduced (slightly) and that she now had a total of 10 masses… before this she never had more than a single tumor. We are now researching clinical trials and “non-traditional” cancer therapies. But my advise, which I’m sure is what your doctors will advise, is to use local treatment if possible. Don’t look for alternative treatments unnecessarily. Hope this helps.
MichaelJanuary 19, 2018 at 11:27 am #96476spokanemomParticipant
I am so sorry that your family is going through this, but I am also impressed that you have obviously geared up to battle 😉 I am glad to hear that you will be getting additional opinions, and I think you need to speak directly with an experienced surgeon. My husband was diagnosed (Nov.2016) upon discovery of a tumor just outside his gallbladder, slightly below the bifurcation. The tumor was not known to have grown outside the walls of the bile duct, although it sounds like your father’s has. Fortunately, our town has a very experienced liver/pancreas surgeon who felt that he could perform surgery. The surgeon told us that he would remove the gallbladder and common bile duct, and would test the duct just outside the pancreas and just outside the liver. If the duct by the pancreas was positive for cancer, he would perform a Whipple. If the duct by the liver was positive, he would resect up to 70% of the liver to get clear margins. He said that my husband was healthy enough to have both procedures if necessary, but only if needed and only if they could get clear margins in the liver. My husband was 42 at the time, and a bicycle commuter in otherwise great health.
However, when they opened him up for surgery, they discovered that his bifurcation was inside his liver. They removed his gallbladder, common bile duct, and the entire right lobe of his liver. They chose the right side because it appeared to be more heavily involved than the left and they were hopeful they could get clear margins. They were not able to get clear margins, so they closed him up without performing the Whipple, even though the margin by the pancreas was also positive. He had one positive local lymph node and was diagnosed stage 3B. Prior to surgery, they were hopeful that it was stage 1, but said it was very rare for that to be the case. His surgery lasted 16 hours, in part because of all the testing needed to determine if they could get clear margins or not.
My husband completed 7 rounds of chemo and 5 weeks of radiation with chemo and has been NED (No Evidence of Disease) in all scans and blood work since surgery. He completed all treatments at the end of August. Even though we were so disappointed they were not able to get clear margins during surgery, we are still thankful they proceeded with the resection.
Your father’s health will serve him well in this upcoming journey. He lucky to have you helping him with research. I was the main researcher for my husband, and I enlisted two family-members to assist me. It sounds like your girlfriend is a great resource for you. Use this board and search for cases that are similar to your father’s. I learned so much, which helped me ask the right questions.
You mentioned liver transplantation. Did you research the Mayo Clinic Protocol? I am not sure of the equivalent in Canada.
I wish you and your family well!
January 16, 2018 at 6:52 pm #96464
- This reply was modified 2 years, 1 month ago by spokanemom.
This cancer tends to be tough as it is usually not discovered until fairly advanced. The question mark for me in your description is that an oncologist, not a surgeon, told you that surgery is not possible. Was your father’s case discussed by a tumor board that included a surgeon(s) or was this the oncologist’s judgment? Not all patients are eligible for surgery or transplant, but please look for good opinions on this, again because some surgeons are more skilled and able to take on more difficult cases than others.
Your research and persistence in seeking the best medical advice will be hugely beneficial for your father – the medical maze is difficult, but you will get through it.
Re hospital and doctor recommendations for Toronto, that is not something I can provide but here is a link to an old post that discusses doctors people have called upon in your area. Regards, Mary
“https://cholangiocarcinoma.org/db/topic/surgeons-in-mississauga-toronto-ontario/“January 16, 2018 at 5:39 pm #96463
My fathers case of cholangiocarcinoma is a tough one. There is extensive involvement of the blood vessels and the tumor is located right at the split of the bile duct (beginning of both the left/right lobes). Therefore, our oncologist at Sunnybrook has deemed it inoperable. It has been extremely hard to digest. We are currently seeking a second opinion at Toronto General / Princess Margaret, and plan on seeking a third opinion at either Jurvanski Cancer Centre in Hamilton, or Mount Sinai.
I pray that they find a solution for this cancer. No family deserves to go through this.
You are all in my prayers. I will update this post when I receive more information.January 13, 2018 at 8:41 pm #96455
Thank you deb & bglass for your advice and responses. I will certainly seek a second/third/fourth opinion if they deem my fathers case un-operable.
If anyone has dealt with a similar situation in Canada, Ontario … please recommend the top hospitals/surgeons you sought opinions from. We plan on seeking additional opinions from the UHN (Toronto General, Toronto Western, Princess Margaret) as well as Jurvanski Cancer Center in Hamilton Ontario.January 13, 2018 at 12:02 am #96452
I wanted to chime in on something Debbie mentioned. It is important to get good surgical opinions. These tumors can be hard to remove, and some surgeons are more willing than others to take on a more difficult surgery. In my own case, similar to what Debbie reported, I was initially told by the tumor board my tumor was inoperable, but then a different surgeon was consulted and he was able to perform the surgery.
Regards, MaryJanuary 11, 2018 at 11:38 pm #96432debnorcalModerator
welcome to our special group, although i’m So sorry your father has been diagnosed with Cholangiocarcinoma. I am so impressed with how well researched and clear headed you are in one short month since diagnosis. This disease generally throws a gut punch that can knock us off our feet for a bit. I can tell you will be a great advocate and source of information for your dad.
My best advice is to have your dad evaluated by a multidisciplinary medical center that is expert in Cholangiocarcinoma. I can’t emphasize strongly enough how much that matters. Community hospitals simply do not have the experience to know what treatment options are available or the expertise to successfully treat. If your dad is in Ontario, CA, there are a number of excellent centers in that general area. If you go to the main Cholangiocarcinoma Foundation website and follow the newly diagnosed tab, there is a link to expert centers by geographical location. My husband also had a Klatskin tumor and was initially told he was unresectable. I called several expert centers and asked their protocols for obtaining second opinions. We obtained a remote opinion from John’s Hopkins Medical Center ( concurred with original opinion but suggested gem/cis to try to shrink tumor so that he may become eligible for surgery) and an in person visit with UCSF oncologist who brought case to their tumor board, where surgeon offered surgery).
i wish your dad all the best in this fight. Please keep us posted on his progress.
debbieJanuary 11, 2018 at 11:25 am #96418
First off, let me say that it is absolutely heartwarming the amount of support I have seen in this community/forum. All of us in some way, shape, or form have been touched by this cancer whether it is us or our loved ones. My name is Cameron (aged 22), and my father Alan (aged 57) was diagnosed with Cholangiocarcinoma a month ago (December 6th, 2017).
Our story begins with my father’s urine turning very dark colored and presenting non-painful jaundice. Our family doctor referred us to North York General Hospital (Toronto, Ontario. CA) for a CT and MRI scan early December, and was diagnosed with a Klatskin tumor (Cholangiocarcinoma). We were referred to Sunnybrook Odette Cancer Centre on December 11th and are still awaiting a game plan to beat this thing. My father is extremely healthy for his age and has no prior medical issues/incidents. The doctors told us they aren’t sure why or how this cancer develops, “it sort of just happens”. Initially, our oncologist told us that my father’s case is locally advanced non-resectable. This is due to the tumor being wrapped around an important hepatic artery, and in a very tough spot under the liver which makes operating very dangerous. Obviously, this is not what we want to hear, and hope that surgery is an option. We have our final follow up appointment on January 15th, where we will be given a number of options and a game plan.
We were additionally offered two chemo options (if surgery is not an option): 1. Gemcitabine and Cisplatin which I understand is now the standard treatment for non-resectable bile duct cancers. 2. a clinical trial phase 2 of nab-paclitaxel, gemcitabine, and cisplatin. I have done a lot of research on this new clinical trial and have read some promising results. I hope that if any of you/your loved ones are battling this cancer – they are offered similar treatment options. My heart goes out to all of those battling and affected by this cancer. I hope that together, we can all overcome this battle. My family is ready to go to war on this thing, bring it on!!!
Be sure to do your research, my girlfriend is in the medical field and helped me research alternative treatments/methods like liver transplant which I brought up during one of our follow up appointments. The option seemed to spark some interest in the doctors and they are discussing it further currently. I have also done some research on new successful radiation methods such as branchytherapy, keytruda (pembrolizumab), photodynamic therapy, immunotherapy, and IPT Insulin Potentiation Therapy.
Has anyone used the addition nab-paclitaxel? Has it worked? Have you seen any positive results?
How do you approach getting a second/third opinion from other hospitals, do you all recommend doing this?
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