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.

wjdemarco | @wjdemarco | Jan 27, 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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hi tball I was just diagnosed in November and would like to stay in touch @wjdemarco

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Teresa, Volunteer Mentor | @hopeful33250 | Jan 13, 2022
In reply to @jerrydrennan "I have ( as i see it) been active. I was a cancer patient since I..." + (show)
@jerrydrennan

I have ( as i see it) been active. I was a cancer patient since I was 11 yrs old. I was very athletic . Played sports in High school and after HS. I Have had lapse in staying healthy and active , but in the most part I was very active and health conches. I did seek help when I was diagnosed with CC. Knowing how tough the road for a chance at a transplant was going to be. the local Gym Anytime fitness started helping me a year before my Transplant happened. After my transplant 11 days. I had a major bleed at my native bile duct stump. I was at the GOL house and was rushed to St Mary's ER where they had to resuscitate me 2 Times and went thru 30+ units of blood. ICU for 4 Days. I not sure I would be here today with out Faith, Prayers, and Physically fit . ATF has continued to help me since the Transplant and the accident.
I hope I answered your question with this long answer.

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@jerrydrennan
Yes, you answered the question and then some. I really admire the way you have handled such long-standing health problems.

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jerrydrennan | @jerrydrennan | Jan 13, 2022

I have ( as i see it) been active. I was a cancer patient since I was 11 yrs old. I was very athletic . Played sports in High school and after HS. I Have had lapse in staying healthy and active , but in the most part I was very active and health conches. I did seek help when I was diagnosed with CC. Knowing how tough the road for a chance at a transplant was going to be. the local Gym Anytime fitness started helping me a year before my Transplant happened. After my transplant 11 days. I had a major bleed at my native bile duct stump. I was at the GOL house and was rushed to St Mary's ER where they had to resuscitate me 2 Times and went thru 30+ units of blood. ICU for 4 Days. I not sure I would be here today with out Faith, Prayers, and Physically fit . ATF has continued to help me since the Transplant and the accident.
I hope I answered your question with this long answer.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 13, 2022
In reply to @jerrydrennan "Everyone has challenges, its how you handle the challenges. The tumors in the lungs on a..." + (show)
@jerrydrennan

Everyone has challenges, its how you handle the challenges. The tumors in the lungs on a normal day do not affect my breathing That much. Its is a lot harder during allergy season ,like right now. I have more raspatory problems due the lung cancer.
Palliative care has helped with the nerve pain i have from the chemotherapy and the nerve damage i have due to the wreck.
I have been working with trainers at my gym , they have help me alot with stretching' strength and balance problems

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I'm so impressed with your attitude, @jerrydrennan. You have been so proactive in your health journey. Seeking help from the medical community as well as trainers shows a lot of initiative.

I'm wondering if this type of initiative has always been your personal style or if your health challenges have given you this outlook?

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jerrydrennan | @jerrydrennan | Jan 13, 2022

Everyone has challenges, its how you handle the challenges. The tumors in the lungs on a normal day do not affect my breathing That much. Its is a lot harder during allergy season ,like right now. I have more raspatory problems due the lung cancer.
Palliative care has helped with the nerve pain i have from the chemotherapy and the nerve damage i have due to the wreck.
I have been working with trainers at my gym , they have help me alot with stretching' strength and balance problems

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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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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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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."

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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. 🙂

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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.

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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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