1. < Liver Cancer

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 11, 2022
In reply to @mngardenaddict "Sounds good! I did have a lung resection at the beginning of January 2021 and there..." + (show)
@mngardenaddict

Sounds good! I did have a lung resection at the beginning of January 2021 and there is a tiny spot in another part of my lung that was noticed in May 2021. It's growing so slowly that we decided to sit and wait. This will be the first time I don't have to come back for six months. This time I feel confident enough to be willing to wait that long between appointments. My idea is to live every day to the fullest, get things done while I have the energy to do them so if this darn cancer comes back, I won't be fretting about all the things I really needed to get done, but wasted my time instead. At least one thing about cancer is that we truly know not to take each day for granted, we say the things to people that are important to communicate, and to not sweat the small stuff. For those reminders I'm grateful. Plus I get to hang out on my porch swing with all you interesting people. It's nice not to sit alone.

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Hello @mngardenaddict

It was good to read your post and see what a good attitude you have developed as a result of these serious health issues.

I appreciate your mentioning that you no longer take a day for granted and that you communicate things to people that are important.

You mention that this is slow-growing cancer. Do you know the name of it?

I love word pictures and the one I really like is that you are glad that you "get to hang out" on your porch swing with all of the interesting people on Connect. You are right when you say, "It's nice not to sit alone."

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1 reply
jerrydrennan | @jerrydrennan | Jan 11, 2022
In reply to @mngardenaddict "I'm so happy that things worked out for you!!!" + (show)
@mngardenaddict

I'm so happy that things worked out for you!!!

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Thank You,
My Transplant has worked out great. The cancer has mets. to my Lungs and Spinal cord. So I am dealing with this for now. Blessed to be Here.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 11, 2022
In reply to @jerrydrennan "Thank You, My Transplant has worked out great. The cancer has mets. to my Lungs and..." + (show)
@jerrydrennan

Thank You,
My Transplant has worked out great. The cancer has mets. to my Lungs and Spinal cord. So I am dealing with this for now. Blessed to be Here.

Jump to this post

@jerrydrennan,

It is good to have you on Connect.

Do you know what treatments will follow for the METs to the lungs and spinal cord?

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1 reply
jerrydrennan | @jerrydrennan | Jan 11, 2022
In reply to @hopeful33250 "@jerrydrennan, It is good to have you on Connect. Do you know what treatments will follow..." + (show)
@hopeful33250

@jerrydrennan,

It is good to have you on Connect.

Do you know what treatments will follow for the METs to the lungs and spinal cord?

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I have been on Gem/ Carb. for the past year. I had Vascular invasion . Tumors have shrunk to nodules on spinal cord. the nodules in the lungs have gone but the tumors have had very little shrinkage but they are shrinking slowly.

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1 reply
tball3748 | @tball3748 | Jan 11, 2022
In reply to @hopeful33250 "Hello @tball3748 and welcome to Mayo Clinic Connect. I appreciate you sharing your journey with cholangiocarcinomas...." + (show)
@hopeful33250

Hello @tball3748 and welcome to Mayo Clinic Connect. I appreciate you sharing your journey with cholangiocarcinomas. We have other members who have mentioned Dr. Smoot at Mayo and they all seem quite pleased with his work.

From what you posted it sounds like it will be another month before you have an MRI scan to see if the tumor has shrunk. Is my understanding correct?

Have you tolerated the nightly chemo well? Any side effects?

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Yes, 4 weeks or so. Pemazyre hasn’t been as bad as I thought it would be. Dry eyes & mouth mostly. Now my phosphorus is going too high, so now have to watch my diet more so and taking a phosphorus binder. We’ll see how that works. I do miss chocolate & peanut butter though!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 11, 2022
In reply to @jerrydrennan "I have been on Gem/ Carb. for the past year. I had Vascular invasion . Tumors..." + (show)
@jerrydrennan

I have been on Gem/ Carb. for the past year. I had Vascular invasion . Tumors have shrunk to nodules on spinal cord. the nodules in the lungs have gone but the tumors have had very little shrinkage but they are shrinking slowly.

Jump to this post

I'm glad that there is a shrinking of the tumors, @jerrydrennan. Do you currently have pain with the nodules on the spinal cord?

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1 reply
mngardenaddict | @mngardenaddict | Jan 11, 2022
In reply to @hopeful33250 "Hello @mngardenaddict It was good to read your post and see what a good attitude you..." + (show)
@hopeful33250

Hello @mngardenaddict

It was good to read your post and see what a good attitude you have developed as a result of these serious health issues.

I appreciate your mentioning that you no longer take a day for granted and that you communicate things to people that are important.

You mention that this is slow-growing cancer. Do you know the name of it?

I love word pictures and the one I really like is that you are glad that you "get to hang out" on your porch swing with all of the interesting people on Connect. You are right when you say, "It's nice not to sit alone."

Jump to this post

The last bout with this beast was to do a lung resection to remove a mass that did turn out to be cholangiocarcinoma so it had obviously moved up from my liver. The new darned little brat that's giving me mental grief is most likely cholangio as well. Fortunately in the last seven months it's been growing very slowly so I'll not yell at it for being obnoxious as long as it stays in the corner and doesn't cause any more real problems. 🙂

REPLY
jerrydrennan | @jerrydrennan | Jan 12, 2022
In reply to @hopeful33250 "I'm glad that there is a shrinking of the tumors, @jerrydrennan. Do you currently have pain..." + (show)
@hopeful33250

I'm glad that there is a shrinking of the tumors, @jerrydrennan. Do you currently have pain with the nodules on the spinal cord?

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The nodules/tumors was found by accident. I was in a auto accident 1 year after my transplant. the accident broke my neck . C6 and C7 shattered. I had brackets and screws put in to hold my head on. the MRI and CT scan after the emg. surgery showed the lesions on my spinal cord and noticed tumors in my lungs. So to anwer the Question you had. Yes I am in a lot of discomfort. I am working with palliative care. Pain Management was not able to help. I have some relief from Meds but i am limited due to the transplant.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 12, 2022
In reply to @jerrydrennan "The nodules/tumors was found by accident. I was in a auto accident 1 year after my..." + (show)
@jerrydrennan

The nodules/tumors was found by accident. I was in a auto accident 1 year after my transplant. the accident broke my neck . C6 and C7 shattered. I had brackets and screws put in to hold my head on. the MRI and CT scan after the emg. surgery showed the lesions on my spinal cord and noticed tumors in my lungs. So to anwer the Question you had. Yes I am in a lot of discomfort. I am working with palliative care. Pain Management was not able to help. I have some relief from Meds but i am limited due to the transplant.

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@jerrydrennan

You have certainly had a lot of challenges, Jerry. I would suspect that the tumors in the lungs would cause breathing difficulties as well. Is that the case?

Does palliative care help with problems other than the pain in the spinal column?

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