August 10, 2021 at 6:57 am #101224Deb12ranParticipant
My cousin was diagnosed but was already having liver failure. He waited to long to go to doctor.
My Mom has just been recently diagnosed and she is 88 and does not want any treatment.
It seems odd to me for all 3 of us in the family to have this type of cancer especially since all I read say it is not hereditary.
I pray they find out more about this cancer and hopefully something that will cure it.
DebbieAugust 4, 2021 at 4:10 pm #101203bglassModerator
Thank you for sharing your story. It is wonderful that you have been free of this cancer now for almost 14 years. But I am very sorry to hear your Mom and cousin have not experienced similar positive outcomes. I appreciate that you posted your story – your experience brings hope to our newly diagnosed patients.
Were your family members also cholangiocarcinoma patients? It would be highly unusual to find three close family members with this cancer. There is not a lot of evidence in favor of a genetic tendency for cholangiocarcinoma, although there are some inherited genetic defects that predispose individuals to a family of cancers that might include cholangiocarcinoma.
I hope you will stay in touch. Take care, regards, MaryAugust 3, 2021 at 9:35 am #101197Deb12ranParticipant
I was diagnosed with cholangiocarcinoma in September 2007. I was able to get for surgery to remove 70% of my liver October 17 of 2007. The surgeon said he was pretty sure he got it all, but went through 6 months of chemo, just in case. So far no more signs of cancer. A couple of years, my cousin was diagnosed with it and he did not make it. This past year my Mom at 86 was diagnosed with it and she has decided she does not want treatment. I feel like a walking miracle.May 17, 2021 at 12:47 pm #101064patticParticipant
My husband was diagnosed with intrahepatic cholangiocarcinoma 5 years ago. Not operable. He had y90 then 1 and half years of chemo, gem/cis. For the last 3 and half years he has had No treatments of any kind and has had his blood work and imaging every 4 months all within normal limit, including his tumor marker.. No recurrent or resideual neoplasm. NO metastasis. His oncologist and interventional radiologist are very encouraged, words by them “amazing”. He will continue with blood work every 4 months and imaging every 6 months. He is 65 now. We are beyond grateful to enjoy this time. Never give up hope.December 15, 2020 at 6:46 am #100716Grandma05Participant
I’m sorry to hear about your husband’s CC.
I understand the struggles all too well.
I am a 26 year survivor.
I fought for a few years doing all I could and just pushed through when I didn’t think I could.
I had 3 surgeries and went on a clinical trial drug back in 1994.
(I had other things done as well but those I feel were the ones contributing to my survival). I was not a candidate for Chemo.
Please know I am praying for complete healing for your husband, and strength and peace for you.
BevNovember 16, 2020 at 9:39 pm #100609bglassModerator
Welcome to our community. Your husband’s experience in moving from treatment to treatment is common with our cancer, and thankfully the treatment options are growing each year.
You asked about inspiring patient stories from long-term survivors. Here is one, Patty C, who survived more than seven years even though her cancer was unresectable. Patty was under treatment most of that time, and yet had a joyful life with her family, travelled and pursued many interests. The blog is best read from bottom to top.
I hope your husband is feeling well despite being in treatment. He is lucky to have you at his side.
Regards, MaryNovember 16, 2020 at 6:28 pm #100608KathySDParticipant
My husband was diagnosed with unresectable CC in September 2019. Since then he’s undergone standard chemo, an off label treatment, tried a clinical trial, and is now back on standard chemo. He could use some inspiration. I was hoping people could share their story or their loved ones story of living with this disease and holding it at bay longer than expected.
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