Diagnosed with cholangiocarcinoma, can this be treated?

Posted by suchita90 @suchita90, Nov 10, 2021

Father in law is diagnosed with this and surgery could happen. But seems like chemo is not ending, even oral chemo is happening. Lot of side effects after 8 chemos
Any treatment to cure permanently and what long term measures can be taken.
Do suggest. Thanks

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Most definitely, @suchita90. There are several treatment options available for people diagnosed with cholangiocarcinoma. You can see them listed on Mayo Clinic's website here:
– Treatments for cholangiocarcinoma (bile duct cancer) https://www.mayoclinic.org/diseases-conditions/cholangiocarcinoma/diagnosis-treatment/drc-20352413

Fellow members like @kjrita @afrancesca @clarke6 @mngardenaddict @jerrydrennan @chicory2010 can share the treatments they had or you can read more in this related discussion:
– Cholangiocarcinoma – Bile Duct Cancer – anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

Cancer specialists rarely use the words "cure permanently." Instead you may hear terms like "in remission" or "no evidence of disease."

Is your father-in-law getting chemotherapy to shrink the tumor to make surgery possible? What side effects is he experiencing from chemotherapy?

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Yes he is getting chemo, 6 chemo done later two happened with new drug and a oral chemo tablet is also prescribed to shrink remaining portions seen in sonography after 6 chemo. Remaining size is not shrinking but not growing too.

When this was diagnosed in June 21 surgery happened and 12 cm tumor was removed and the gall bladder, also small portion of liver was cut.

Currently after the last two chemo and mainly the oral ones, hair loss started ,weakness , reduced diet , body pain and major digestion issues.
So not able to understand till when chemo shud happen.

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Hello, @suchita90 Yes, the word, cancer, is frightening. It has thrown me into shock and fear more than once.

Colleen has provided you with some very helpful reading on the Mayo Clinic website. I'd like to share that a very good friend was diagnosed with cholangiocarcinoma in 2019. I didn't know what that was at the time. He was being treated at an academic medical center in California and his cancer team sent him to Mayo Clinic for more specialized care. He was quite ill for many months with the treatments he received prior to surgery. The treatments as you've said with your father-in-law were done to reduce the tumor. I saw him at one point in late 2019 when he was very weak from all the treatments he received. I saw him this past summer and he has been exercising, back at work doing something he really loves, and eating a healthy diet. He has to follow up regularly with blood tests and his appointments which he does.

I shared this story of our friend because when I read about cholangiocarcinoma I was very scared for our friend. Cancer research is ongoing and there are so many treatments that are available now that probably weren't there just a few years ago. Can you ask your father-in-law's doctor for more information? Do you have friends and family you can talk to about this? A caregivers' support group you can attend online or where you live? Emotional support from others will help you personally and to support your father-in-law.

Please come back to us and let us know how your father-in-law is doing and if you have other questions. We are not medical professionals at Mayo Clinic Connect however we can provide you with ideas, questions to ask, and most importantly support.

Blessings,

Helen

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Thanks a lot friends for taking time to help me and coach me on this thing, as I have seen this thing in my dear ones for the first time and very closely
Trying to understand every aspect so that we can do best for him. I am in touch with my some nearby friends who had this type of situation in their family too, but truly said cancer word is like cancer= death, thats the fear we have in our surroundings.

I stay in India currently.
Thanks a lot @colleenyoung @naturegirl5

We are visiting doc this week to understand more on this and mainly further steps, tests will happen to decide if further chemo are needed or not. So hoping last two chemos might result in better situation.

REPLY
@suchita90

Thanks a lot friends for taking time to help me and coach me on this thing, as I have seen this thing in my dear ones for the first time and very closely
Trying to understand every aspect so that we can do best for him. I am in touch with my some nearby friends who had this type of situation in their family too, but truly said cancer word is like cancer= death, thats the fear we have in our surroundings.

I stay in India currently.
Thanks a lot @colleenyoung @naturegirl5

We are visiting doc this week to understand more on this and mainly further steps, tests will happen to decide if further chemo are needed or not. So hoping last two chemos might result in better situation.

Jump to this post

There a great book by Dr. Robert Buckman called "Cancer is a word, not a sentence" https://www.goodreads.com/book/show/495263.Cancer_Is_A_Word_Not_A_Sentence

With medical advancements and early screening and diagnosis this is becoming more true every day.

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@suchita90

Thanks a lot friends for taking time to help me and coach me on this thing, as I have seen this thing in my dear ones for the first time and very closely
Trying to understand every aspect so that we can do best for him. I am in touch with my some nearby friends who had this type of situation in their family too, but truly said cancer word is like cancer= death, thats the fear we have in our surroundings.

I stay in India currently.
Thanks a lot @colleenyoung @naturegirl5

We are visiting doc this week to understand more on this and mainly further steps, tests will happen to decide if further chemo are needed or not. So hoping last two chemos might result in better situation.

Jump to this post

Hello again, @suchita90 Thank you for letting us know that your family-in-law and family will see the doctor this week.

Please consider writing your questions ahead of time that you will ask the doctor. You can then rely on your writing instead of trying to think about what you what to ask. I have learned that written questions and taking notes during my doctor visits help me to focus.

Your father-in-law has a wonderful and caring family. I am hopeful that the doctor and team will give you information to help you to support your father-in-law, your family and yourself.

I wish you peace and blessings,

Helen

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Thanku again.
Wanted to share that the drug change after 6 chemos happened on the basis on Cancer Antigen test(CA 19-9) which show the tumor presence, Seems like even after changing the drug did not helped, the value has increased from 937(after 6 chemos & surgery) to 2340(after 7th & 8th chemo) which denotes tumor is increasing rapidly.
Not sure if medicines are not working in his body or we got late already though surgery was a massive success, unpredicted positive results we cud see that time as per doctors.

Do u guys think we shud get him treated in US or any other country apart from India

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@suchita90

Thanku again.
Wanted to share that the drug change after 6 chemos happened on the basis on Cancer Antigen test(CA 19-9) which show the tumor presence, Seems like even after changing the drug did not helped, the value has increased from 937(after 6 chemos & surgery) to 2340(after 7th & 8th chemo) which denotes tumor is increasing rapidly.
Not sure if medicines are not working in his body or we got late already though surgery was a massive success, unpredicted positive results we cud see that time as per doctors.

Do u guys think we shud get him treated in US or any other country apart from India

Jump to this post

@suchita90, you asked about getting care outside of India. I'm not familiar with India's healthcare system. There are several things to consider. How challenging might travel be for your father-in-law? What additional risks especially with COVID might travel impose? Should you wish to inquire about consulting with experts at Mayo Clinic in the US or London, UK, please see the appointment request information here: http://mayocl.in/1mtmR63

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@colleenyoung

Most definitely, @suchita90. There are several treatment options available for people diagnosed with cholangiocarcinoma. You can see them listed on Mayo Clinic's website here:
– Treatments for cholangiocarcinoma (bile duct cancer) https://www.mayoclinic.org/diseases-conditions/cholangiocarcinoma/diagnosis-treatment/drc-20352413

Fellow members like @kjrita @afrancesca @clarke6 @mngardenaddict @jerrydrennan @chicory2010 can share the treatments they had or you can read more in this related discussion:
– Cholangiocarcinoma – Bile Duct Cancer – anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

Cancer specialists rarely use the words "cure permanently." Instead you may hear terms like "in remission" or "no evidence of disease."

Is your father-in-law getting chemotherapy to shrink the tumor to make surgery possible? What side effects is he experiencing from chemotherapy?

Jump to this post

looking for anyone with diagnosis of extraheper Outside the organs) bile duct cancer with no tumors . will be at 14 Chemo treatments as of next week and coming to Mayo for a second opinion. this has metastasized to the lymph nodes. have found no one with this diagnosis.

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@billdemarco

looking for anyone with diagnosis of extraheper Outside the organs) bile duct cancer with no tumors . will be at 14 Chemo treatments as of next week and coming to Mayo for a second opinion. this has metastasized to the lymph nodes. have found no one with this diagnosis.

Jump to this post

Hi @billdemarco, are you referring to extrahepatic cholangiocarcinoma, bile duct cancer outside the liver. Cholangiocarcinoma is a rare cancer. Extrahepatic cholangiocarcinoma is the most common type of bile duct cancer.

In addition to connecting with @suchita90 here, I'll also invite fellow members like @kjrita @afrancesca @clarke6 @mngardenaddict @jerrydrennan @chicory2010 to join this discussion. You can also read more in this related discussion:
– Cholangiocarcinoma – Bile Duct Cancer – anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

Great that you're coming to Mayo for a second opinion. Are you going to Mayo Clinic in Rochester or another campus? How are doing with the chemo treatments? Side effects?

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@billdemarco

looking for anyone with diagnosis of extraheper Outside the organs) bile duct cancer with no tumors . will be at 14 Chemo treatments as of next week and coming to Mayo for a second opinion. this has metastasized to the lymph nodes. have found no one with this diagnosis.

Jump to this post

I have this, extraheper no apparent tumors , metastases to lymphnode
16 chemo and at mayo for second opinion.

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