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Husband recently diagnosed with Cholangiocarcinoma and had no symptoms

Posted by mscluppy @mscluppy, Dec 23, 2024

My husband was recently diagnosed with Cholangiocarcinoma. We were referred to Mayo and have our first appointment in a week. What I don't understand is why blood tests taken the end of Sept were all normal range. Lesion was found on the liver by accident otherwise no symptoms. They say it's about 8cm which is quite large. We don't know what to expect and it's scaring me. I'm assuming the size would mean it's more advanced. Can anyone share their experience if it's similar?

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mscluppy | @mscluppy | Feb 2 1:50pm
In reply to @astemko "I was just thinking about you! This week was his week off starting again on Thurs..." + (show)
@astemko

I was just thinking about you! This week was his week off starting again on Thurs hopefully his bloodwork will stay strong so we can move forward. He having pain which is being managed with medication but it’s hard on his stomach. Otherwise okay so far. I hope they can start chemo soon for your husband. Is he in any discomfort at all?

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My husband is doing fine just getting anxious for the port and a date to start chemo. Sorry to hear your husband is having pain. Is it at the site of his port or elsewhere? So you start another 3 weeks of chemo this week? When do they do a scan or test to see if the tumor has shrunk?

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astemko | @astemko | Feb 2 2:29pm

He has abdominal pain. None at the site of the port. I think the oncologist said ct scan after 3 or four cycles

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1 reply
astemko | @astemko | Feb 2 2:30pm
In reply to @astemko "He has abdominal pain. None at the site of the port. I think the oncologist said..." + (show)
@astemko

He has abdominal pain. None at the site of the port. I think the oncologist said ct scan after 3 or four cycles

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Cycle 2 starts Thurs

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1 reply
mscluppy | @mscluppy | Feb 2 3:55pm
In reply to @astemko "Cycle 2 starts Thurs" + (show)
@astemko

Cycle 2 starts Thurs

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I'll be thinking of you both on Thursday. God bless.

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astemko | @astemko | Feb 2 4:43pm

I’ll be thinking of you both also. I’m glad your husband is feeling well otherwise. Keep in touch

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mchlron2 | @mchlron2 | Feb 13 8:48am

I just found this group. Thank you for all the information, I have learned a lot reading from all of you. My name is Michelle and I am taking care of my 87 year old mother with stage 4 cholangiocarcinoma. She has done 6 rounds of treatments (1 chemo/immunotherapy, 1 chemo, 1 lab=1 round). She never had any nausea and lost some hair but not all of it. She has thick hair! The oncologist is giving her a break from chemo and is going to see if he can get her approved for a targeted pill call Ivosidenib? Has anyone in this group experienced this treatment? She has been through a lot. 2 blood transfusions and a couple hospital stays. She developed blood clots early into the treatment, she is now taking blood thinners. She is one strong woman! She is determined to go back home to her house in the country and sit on her front porch 🙂 We will never take that hope away from her. Hope is where the future lies. Her symptoms were some dizziness or lightheadedness for a few years prior to the diagnosis. We assumed it was age-related and might be? She had some bloating and her stomach hurt and she lost her appetite. They did a CT scan and this is what they found. She has mets to her bones. Her oncologist said that he treated a gentleman years ago with the same diagnosis and age and is still living over ten years. I want to believe this its true. Her mother lived well into her nineties. Any suggestions for her care would be greatly appreciated and if I could help anyone else or their loved ones while they are going through this, I will. Cancer is awful, not matter what age.

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1 reply
mscluppy | @mscluppy | Feb 13 10:51am
In reply to @mchlron2 "I just found this group. Thank you for all the information, I have learned a lot..." + (show)
@mchlron2

I just found this group. Thank you for all the information, I have learned a lot reading from all of you. My name is Michelle and I am taking care of my 87 year old mother with stage 4 cholangiocarcinoma. She has done 6 rounds of treatments (1 chemo/immunotherapy, 1 chemo, 1 lab=1 round). She never had any nausea and lost some hair but not all of it. She has thick hair! The oncologist is giving her a break from chemo and is going to see if he can get her approved for a targeted pill call Ivosidenib? Has anyone in this group experienced this treatment? She has been through a lot. 2 blood transfusions and a couple hospital stays. She developed blood clots early into the treatment, she is now taking blood thinners. She is one strong woman! She is determined to go back home to her house in the country and sit on her front porch 🙂 We will never take that hope away from her. Hope is where the future lies. Her symptoms were some dizziness or lightheadedness for a few years prior to the diagnosis. We assumed it was age-related and might be? She had some bloating and her stomach hurt and she lost her appetite. They did a CT scan and this is what they found. She has mets to her bones. Her oncologist said that he treated a gentleman years ago with the same diagnosis and age and is still living over ten years. I want to believe this its true. Her mother lived well into her nineties. Any suggestions for her care would be greatly appreciated and if I could help anyone else or their loved ones while they are going through this, I will. Cancer is awful, not matter what age.

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It sounds like your mother is a fighter and nothing can keep her down. My husband is just starting his journey so I cannot give any advise but I can send prayers and hope she (and you) stay strong.

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