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Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

Posted by krishh @krishh, Jul 15, 2017

I'm on my fourth line of treatment. What treatments are others receiving for this? Thanks ~

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lilbit78 | @lilbit78 | Apr 11 5:59am
In reply to @lilbit78 "My FIL was recently hospitalized and they found a tumor on his liver. They diagnosed it..." + (show)
@lilbit78

My FIL was recently hospitalized and they found a tumor on his liver. They diagnosed it as Non small cell lung cancer but his bone and lung scan came back great. Has anyone else come across something like this. Is it even possible? His Physician doesn’t have answers and he doesn’t see the Oncologist for 3 weeks.

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After many call we have found that it is non small cell carcinoma on the liver duct (cholangiocarcinoma). Very fatal and rare. He doesn’t see the Oncologist for 2 more weeks so no plan of care yet. My FIL doesn’t want to tell the family yet esp my MIL as she has health issues of her own. So we’re just waiting and praying. It’s hard, but we have to respect his wishes.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 12 1:37pm
In reply to @lilbit78 "After many call we have found that it is non small cell carcinoma on the liver..." + (show)
@lilbit78

After many call we have found that it is non small cell carcinoma on the liver duct (cholangiocarcinoma). Very fatal and rare. He doesn’t see the Oncologist for 2 more weeks so no plan of care yet. My FIL doesn’t want to tell the family yet esp my MIL as she has health issues of her own. So we’re just waiting and praying. It’s hard, but we have to respect his wishes.

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@lilbit78, Try to keep in mind that every person that is diagnosed with cancer will process treatments differently. Advancements are happening fast in some areas of cancer research, and statistics that you see today are generally lagging behind. I have stage IV lung cancer, and the statistics for survival are based on people that did not have access to the treatment that I'm on today. At 4 years post-diagnosis, I've already surpassed my initial prognosis. There is real hope in today's targeted cancer care.
"In the last several years there have been significant new insights into the molecular pathogenesis of CCA. New diagnostic and therapeutic modalities have also been developed, resulting in improved detection rates and outcomes. In addition, we have now entered the era of targeted therapies for human cancers." (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2547491)

There are others on Connect facing a similar diagnosis. Here's a link to a related post: https://connect.mayoclinic.org/comment/652854/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 12 3:22pm
In reply to @lilbit78 "After many call we have found that it is non small cell carcinoma on the liver..." + (show)
@lilbit78

After many call we have found that it is non small cell carcinoma on the liver duct (cholangiocarcinoma). Very fatal and rare. He doesn’t see the Oncologist for 2 more weeks so no plan of care yet. My FIL doesn’t want to tell the family yet esp my MIL as she has health issues of her own. So we’re just waiting and praying. It’s hard, but we have to respect his wishes.

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Hi @lilbit78, I'm glad that you were able to get clarification on your father-in-law's diagnosis of non small cell cholangiocarcinoma. I moved you posts to this existing discussion:
- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

I did this so you can connect with other members with a similar diagnosis more easily. I can imagine that this is very hard on everyone, especially the waiting. Is he being seen at a cancer center? Is it close to home?

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lilbit78 | @lilbit78 | Apr 13 6:18am

@colleenyoung , we finally saw his Oncologist yesterday and we found out that the cancer spread to both his liver lobes. My husband went with my FIL, they left there with: it’s fatal and we can do palliative treatment chemo every 3 weeks as long as the body can take it. Then 4 hrs later the Oncologist and his team came up with a new plan it’s called T.A.C.E. Procedure. They feel real confident that it will cure the cancer. Praise God that we have another option. A great one. They said that it has over 70% success rate.
He also finally told my MIL now that he had something to tell her and surprisingly she took it well. My FIL has also been diagnosed with cancer 2 other 2x’s (no lie) and each time he was ready for surgery they came back and said that it was gone they couldn’t find it. Prayers work and Gods not done with him yet!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 16 5:58pm
In reply to @lilbit78 "@colleenyoung , we finally saw his Oncologist yesterday and we found out that the cancer spread..." + (show)
@lilbit78

@colleenyoung , we finally saw his Oncologist yesterday and we found out that the cancer spread to both his liver lobes. My husband went with my FIL, they left there with: it’s fatal and we can do palliative treatment chemo every 3 weeks as long as the body can take it. Then 4 hrs later the Oncologist and his team came up with a new plan it’s called T.A.C.E. Procedure. They feel real confident that it will cure the cancer. Praise God that we have another option. A great one. They said that it has over 70% success rate.
He also finally told my MIL now that he had something to tell her and surprisingly she took it well. My FIL has also been diagnosed with cancer 2 other 2x’s (no lie) and each time he was ready for surgery they came back and said that it was gone they couldn’t find it. Prayers work and Gods not done with him yet!

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Thanks for the update. What a rollercoaster from hearing the news about cancer spread to a hopeful treatment option.

There are few discussions about TACE here that you may wish to review and join.
See all related TACE discussions here: https://connect.mayoclinic.org/search/discussions/?search=TACE

Sending hugs and strength.

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