March 23, 2018 at 12:43 am #96761spokanemomParticipant
I am so sorry to hear that your family is going through this. We also have Kaiser Permanente, but we live in Spokane, WA. I feel that they have been really great so far! The only thing we asked for that was denied was a second opinion at MD Anderson. When the renewal window came up, we changed plans to one that includes MD Anderson, just in case my husband has a relapse (he is NED now and was diagnosed 16 months ago at age 42). The oncologist was surprised that KP approved testing by Foundation One (which was not successfully completed anyway). I am sure it all varies according to the specifics of your plan though. My husband was also hoping to be stage 1 at surgery, but was stage 3B because they did not get clear margins and 1 local lymph node was positive. He is doing great and back to riding his bike to work a few days a week. After surgery, my husband did 7 rounds of gemzar/cisplatin followed by 5 weeks of ration with 5FU chemo (intravenous Xeloda). Are they planning on any gemzar/cisplatin for your wife?
VictoriaMarch 15, 2018 at 8:14 pm #96736fight4mikeParticipant
I am so very sorry about your wife’s diagnosis. My husband was diagnosed with stage 4 cc last May, 2017. We too live in southern California and my husband is being treated at City of Hope in Duarte. You may want to contact them, since they are a cancer center and have experience with this type of cancer. My husband’s oncologist deals regularly with this form, and is involved in clinical trials as well. My husband has been receiving chemotherapy regularly since last June, and it has kept him stable so far. He is not a surgical candidate, so treatment is aimed at keeping his tumors from growing and spreading more. We have great confidence that the doctors at City of Hope are on top of their game, and some of the best in the country. You also may want to consider checking into USC as I have heard great things about their expertise as well.
Since your wife was able to have surgery, she is in a more hopeful situation than many others. I wish you and her the best!
DianeMarch 15, 2018 at 4:42 pm #96735bglassModerator
Welcome to the discussion board. The community here is warm and welcoming, and thanks to our search engine you can find stories from and about patients who have experienced the same treatments, medical issues and decision points as you may encounter.
If you have not already done so, please take a look at the resources for patients and caregivers available on the CCF website.
Your wife was fortunate to have had surgery. I hope her recovery is going well. Hopefully the chemo and radiation will take care of stray cancer cells, if any were left behind.
This diagnosis generally comes as a shock since the cancer has few symptoms in its early phase. It is great you are pursuing research – given the rareness of the cancer, it is important to learn as much as you can. The science for this cancer is evolving rapidly with new treatments either available in trials or under development, so there is every reason to be hopeful. Precision medicine will likely become increasingly important as an approach for cholangiocarcinoma. For this reason, one conversation you and your wife may consider having with her doctors relates to genomic/molecular profiling to determine if any defects are present. Some of the new treatments being developed are specific to certain defects, so it may be good to look into this early on with her medical providers.
Please stay in touch and count on this community’s support and best wishes.
Regards, MaryMarch 15, 2018 at 2:20 pm #96734BhaleParticipant
In November 2017 during a CAT scan for possible kidney stones, a mass was observed in my wife Kelly’s liver. Several scans and a biopsy later, my wife was diagnosed with intrahepatic chloangiocarcinoma. She is 36 years old and the mother to three beautiful children. On March 7, 2018 she underwent surgery to remove the tumor in the liver. The final pathology report showed that the tumor was removed with negative margins. Going into the surgery, the Doctors believed that this was a stage 1 or 2 cancer, but the final report showed the presence of cancer in the dissected lymph nodes, so the cancer was upgraded to a stage 4(a). We met with the oncologist today and they are going to start my wife on Xeloda and radiation after she is healed from the surgery. They are basing this on the recent Bilcap Phase 3 study that shows positive results with Xeloda after resection. I was a complete mess after the initial diagnosis and I started having more hope when they said it was a stage 1 or 2. This news about it being stage 4(a) was not something we were prepared for. My wife (even though she is the one with the cancer) is handling this better than me. I am doing everything I can to get the right information and make sure she sees the right people. I am glad I found this website, because I have seen some great success stories. We are currently with Kaiser Permanente and they have been great so far. I just wanted to find out other people’s experience with Kaiser and if they found a good Oncologist that they used. We live in Southern California, USA. Thanks and I look forward to getting to know people on this website.
- You must be logged in to reply to this topic.