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 ~

Interested in more discussions like this? Go to the Liver Cancer Support Group.

@kieran86

Anyone have this and if so what kind of treatments did you go through?

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Hi Keiran86, welcome. I moved your message to this existing discussion group in the Cancer group about cholangiocarcinoma (https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/). I did this because I wanted to help connect with other members who have experience with bile duct cancer like @lberg @jerrydrennan @lisamb @mngardenaddict @mcarrel @afrancesca @chicory2010 @clarke6 @summer83 @tball3748 @wjdemarco and others. Click VIEW & REPLY to scroll through past posts and learn more about the stories of others and treatments they've had.

Here's another related discussion that may also interest you:
- Bile Duct Cancer Scare https://connect.mayoclinic.org/discussion/bile-duct-cancer-scare/

Kieran, is this a new diagnosis for you? What treatment options are being suggested for you?

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@colleenyoung

Hi Keiran86, welcome. I moved your message to this existing discussion group in the Cancer group about cholangiocarcinoma (https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/). I did this because I wanted to help connect with other members who have experience with bile duct cancer like @lberg @jerrydrennan @lisamb @mngardenaddict @mcarrel @afrancesca @chicory2010 @clarke6 @summer83 @tball3748 @wjdemarco and others. Click VIEW & REPLY to scroll through past posts and learn more about the stories of others and treatments they've had.

Here's another related discussion that may also interest you:
- Bile Duct Cancer Scare https://connect.mayoclinic.org/discussion/bile-duct-cancer-scare/

Kieran, is this a new diagnosis for you? What treatment options are being suggested for you?

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This is a diagnosis for my dad. He has currently been through procedures and tests to find out what was wrong with him and after months this was the diagnosis. He has been offered chemo as a treatment and just wanted to look into a second opinion for him to maybe get some other options

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@krishh

I have cholangiocarcinoma. I've been dealing with it for 27 months. What kind of questions do you have? Happy to correspond with you if you wish.  ~ Kris

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Would like to talk with someone about this we just found out my dad has this. Please reach out with any information you may have. I would appreciate it so much

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@kieran86

This is a diagnosis for my dad. He has currently been through procedures and tests to find out what was wrong with him and after months this was the diagnosis. He has been offered chemo as a treatment and just wanted to look into a second opinion for him to maybe get some other options

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Kieran, if you would like to consider a second opinion at Mayo Clinic, here is the contact information to self-refer or for a physician referral http://mayocl.in/1mtmR63

Here’s more info about Cholangiocarcinoma care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/cholangiocarcinoma/care-at-mayo-clinic/mac-20352416

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@krishh

I have cholangiocarcinoma. I've been dealing with it for 27 months. What kind of questions do you have? Happy to correspond with you if you wish.  ~ Kris

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27 months sounds better than what my doc said. early detection by accident in ER. Cis Gem since November.
16 chemos and now going to Mayo for a CT/MRI to get second opinion.
No pain, no real reactions just trying to keep WBC and ANC up so they can treat me.
Next step may be no Cisplatin , just gem , feel like they are giving up . marked my file as palliative, my wife went nuts.
Cancer was discovered in Lymph Nodes lowered abdomen as second site, source was Bile Duct unspecified.
Health 70 year old, Bill

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@billdemarco

27 months sounds better than what my doc said. early detection by accident in ER. Cis Gem since November.
16 chemos and now going to Mayo for a CT/MRI to get second opinion.
No pain, no real reactions just trying to keep WBC and ANC up so they can treat me.
Next step may be no Cisplatin , just gem , feel like they are giving up . marked my file as palliative, my wife went nuts.
Cancer was discovered in Lymph Nodes lowered abdomen as second site, source was Bile Duct unspecified.
Health 70 year old, Bill

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2nd opinions are good. Even though I’m in the middle of my journey, my husb & I are getting “things in order” like we really should have before my diagnosis. We daily turn towards God for strength and love every day thankful to get a chance to spend time w/each other & our kids and grandkids. Don’t waste too much time being angry. You aren’t in pain right now, so make the most of your time. Mayo has been good for us, glad we went to them for our 2nd opinion. Remind your wife that we all have limited time in this world, so make the most of what we have and get ready for the afterlife. Once I reconciled all this with God, I’ve had waaaay more peace.

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Thank you
Have reconciled this with the Lord and am grateful for the
care I have recieved. Going through final preparations for my corporation with or without me and made burial arrangements but now focused on helping my wife through this. She had cancer five years ago but is clear now . This brings back terrible memories for both of us. Proceeding with house fix up and rebuilding gardens with help. Energy is easily lost but reset through 1 hour PT each week. Finding peace in walking with my rosary

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@tball3748

2nd opinions are good. Even though I’m in the middle of my journey, my husb & I are getting “things in order” like we really should have before my diagnosis. We daily turn towards God for strength and love every day thankful to get a chance to spend time w/each other & our kids and grandkids. Don’t waste too much time being angry. You aren’t in pain right now, so make the most of your time. Mayo has been good for us, glad we went to them for our 2nd opinion. Remind your wife that we all have limited time in this world, so make the most of what we have and get ready for the afterlife. Once I reconciled all this with God, I’ve had waaaay more peace.

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Thanks your words are encouraging. I have given up on guessing the
timetable and got over myself in terms of fear over dying.

but am lucky my pain level has been low but that may change
Need to schedule time with friends and family
Building my spiritual self up is my top priority
Every year I attend a men's silent retreat in Minnesota for a 4 day weekend
on spiritual exercises of st Ignatius of loyola.
Jesuits are great teachers and I will focus on doing the work Journaling
and reflectiong but also have some one on one time with confessor and
counselors.

. I leave there Sunday night and start my appointments at mayo on Monday so
I will be prepared to continue this journey .

Thank you and stay in touch, I think we are good for each other.
I prayed a rosary for you tonight and will continue this at 730 each
evening. I find myself praying more for others now than ever before.
I will pray your pain is manageable and that each day you get stronger in
fighting this disease. Bless you and your husband
Bill

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@billdemarco

Thanks your words are encouraging. I have given up on guessing the
timetable and got over myself in terms of fear over dying.

but am lucky my pain level has been low but that may change
Need to schedule time with friends and family
Building my spiritual self up is my top priority
Every year I attend a men's silent retreat in Minnesota for a 4 day weekend
on spiritual exercises of st Ignatius of loyola.
Jesuits are great teachers and I will focus on doing the work Journaling
and reflectiong but also have some one on one time with confessor and
counselors.

. I leave there Sunday night and start my appointments at mayo on Monday so
I will be prepared to continue this journey .

Thank you and stay in touch, I think we are good for each other.
I prayed a rosary for you tonight and will continue this at 730 each
evening. I find myself praying more for others now than ever before.
I will pray your pain is manageable and that each day you get stronger in
fighting this disease. Bless you and your husband
Bill

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Hey Bill, it’s funny bcz God blessed me with being a very optimistic person. I’ve always tried to be thankful and appreciate things, but now I am even more more thankful and appreciative for even smaller things. I’ve known even at the sadness of my initial diagnosis that God was going to use this and I’ve tried to be ready and available. The only time I feel like I falter is when I’m in pain (post biopsy, super crazy muscle pain while taking the at home targeted therapy, etc). But you know, pain does something else…it really purifies you bcz you are so laser focused on it that there’s really nothing left except you & God. I mourn for people who don’t have the Lord. Can’t fathom going through this without knowing I have a purpose and life in heaven sonmeday.

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@tball3748

Hey Bill, it’s funny bcz God blessed me with being a very optimistic person. I’ve always tried to be thankful and appreciate things, but now I am even more more thankful and appreciative for even smaller things. I’ve known even at the sadness of my initial diagnosis that God was going to use this and I’ve tried to be ready and available. The only time I feel like I falter is when I’m in pain (post biopsy, super crazy muscle pain while taking the at home targeted therapy, etc). But you know, pain does something else…it really purifies you bcz you are so laser focused on it that there’s really nothing left except you & God. I mourn for people who don’t have the Lord. Can’t fathom going through this without knowing I have a purpose and life in heaven sonmeday.

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There you are, was hoping I had not scared you off with my last post. Yes I
have been the optimistic one here as well. I did some reflection on
beneficial suffering, a topic you can Google. It's what you have described
here, the pain and anguish of anticipation brings you closer to God. I feel
blessed because I am able to still function with little pain after 16
chemo. The diagnosis is still scary but there seems to be many options I
read about so staying positive and taking the lead to get to mayo is part
of my optimism and belief I can get to remission and even a cure..thanks
for your response. Headed for a weekend retreat but will look for your
response upon my return

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