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 ~

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@lozierpam54

Update on my husband’s cancer.
It has been a week since I last posted. In that week my husband had a biopsy on his liver. We met with the oncologist and they still couldn’t find where the cancer started. Next was an Endoscopic Ultrasound and colonoscopy. The next day we to the hospital for MRI CHOLANGIO-PANCREATOGRAPHY WO AND W CONTRAST (AKA MRCP). Yesterday we went to the hospital for placement of a port in his chest. We have an appointment tomorrow with the oncologist and I am praying they have found where the cancer started and we can start treatment ASAP.

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We were told today that it is cholangio carcinoma. I am asking for a referral Anderson Clinic in Houston Texas. Anyone have any information about this place? We were told my husband has 6 months without treatment and with treatment maybe 12-18 months.

REPLY

Update on my husband’s cancer.
It has been a week since I last posted. In that week my husband had a biopsy on his liver. We met with the oncologist and they still couldn’t find where the cancer started. Next was an Endoscopic Ultrasound and colonoscopy. The next day we to the hospital for MRI CHOLANGIO-PANCREATOGRAPHY WO AND W CONTRAST (AKA MRCP). Yesterday we went to the hospital for placement of a port in his chest. We have an appointment tomorrow with the oncologist and I am praying they have found where the cancer started and we can start treatment ASAP.

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@jalewallen74

Greetings and thanks for your post. Since he was "opened up" the PET scan was not necessary. I experience the primary side effects of "chemo brain", brain "fog", confusion, forgetfulness, some gastrointestinal "upset" such as incontinence and loose bowels. I wear Depends. My other side effects include restlessness and disturbed sleep. I take naps as needed. I have muscular weakness and balance issues which present a fall danger. My first indication of cancer was falling. I use a walker. I was hospitalized with an E Coli infection. I got Covid twice and my chemo treatments were suspended while I got my second Covid booster and a Flu shot. I don't go in public and when I go to get chemo I wear a mask. I'm not familiar with Durvalumab. I live in Houston, Texas. I assume you have read my post. I often repeat myself. Forgetfulness is another side effect.

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Hello John, Durvalumab was just approved for BD cancer. Bob will be starting it the end of Dec. It is suppose to slow or stop the spread of new cancer.

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@timdale

My CCA tumor was successfully removed via liver surgery 10/20. I had my 6 week CT scan followup last week with no cancer found although CA19-9 blood test is high (but much lower than on 10/20). My Oncology Doctor wants me to start on adjuvant therapy:
Capecitabine plus Gemcitabine infusions for 6 months. I'm leaning heavily to roll the dice and forgo the Chemo treatment.

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thank you so much for your thoughtful reply. Good luck with your fight!!

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My CCA tumor was successfully removed via liver surgery 10/20. I had my 6 week CT scan followup last week with no cancer found although CA19-9 blood test is high (but much lower than on 10/20). My Oncology Doctor wants me to start on adjuvant therapy:
Capecitabine plus Gemcitabine infusions for 6 months. I'm leaning heavily to roll the dice and forgo the Chemo treatment.

REPLY
@lovingwifeterry

Hello, my husband is scheduled to start chemo right after Christmas, long medical history, started with chemo, then the wipple surgery they thought he had pancreatic cancer when they opened him up and could not do surgery it had spread. So repaired a huge herina and closed him. The surgen switched to bile duct after surgery. He has had many side effects related to chemo not to mention E Coli in his baldder and is now filling up with fluid for unknown reasons.. Hopefully he will soon be over these medical problems. His quality of life has been very poor, very sick. He will be on the same chemo drugs plus you have been and our surgon wants him to add Durvalumab to extend life. The Cisplatin will be given in 2 smaller doses to try to help him tolararate the drug. So we will see. Take care. One question why are they doing PET scans? Our Dr brushed it aside and said they were not the best for this Cancer. We are open to the best scans and would love to hear more on your doctors thoughts. We are just searching for the best care and we live in a small town.

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I guess mine are CT scans.
I am so sorry for his plight.
You both must be at wit's end!
Enjoy any help that is offered!

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I have had 2 treatments with Imfinzi ( Durvalumab) infusion. I tolerated it's side effects well since they are similar to the Cisplatin but not so hard on my kidneys.

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@lovingwifeterry

Hello, my husband is scheduled to start chemo right after Christmas, long medical history, started with chemo, then the wipple surgery they thought he had pancreatic cancer when they opened him up and could not do surgery it had spread. So repaired a huge herina and closed him. The surgen switched to bile duct after surgery. He has had many side effects related to chemo not to mention E Coli in his baldder and is now filling up with fluid for unknown reasons.. Hopefully he will soon be over these medical problems. His quality of life has been very poor, very sick. He will be on the same chemo drugs plus you have been and our surgon wants him to add Durvalumab to extend life. The Cisplatin will be given in 2 smaller doses to try to help him tolararate the drug. So we will see. Take care. One question why are they doing PET scans? Our Dr brushed it aside and said they were not the best for this Cancer. We are open to the best scans and would love to hear more on your doctors thoughts. We are just searching for the best care and we live in a small town.

Jump to this post

Greetings and thanks for your post. Since he was "opened up" the PET scan was not necessary. I experience the primary side effects of "chemo brain", brain "fog", confusion, forgetfulness, some gastrointestinal "upset" such as incontinence and loose bowels. I wear Depends. My other side effects include restlessness and disturbed sleep. I take naps as needed. I have muscular weakness and balance issues which present a fall danger. My first indication of cancer was falling. I use a walker. I was hospitalized with an E Coli infection. I got Covid twice and my chemo treatments were suspended while I got my second Covid booster and a Flu shot. I don't go in public and when I go to get chemo I wear a mask. I'm not familiar with Durvalumab. I live in Houston, Texas. I assume you have read my post. I often repeat myself. Forgetfulness is another side effect.

REPLY
@jalewallen74

Finally someone else is dealing with this cancer is posting. I have finished my 6th round of chemotherapy, Gemcitabine and Cisplatin, infused 3 times a month. PET scans showed the cancer has not spread and is shrinking. I have transitioned to immunotherapy with Imfinzi. I have had 2 infusions, once a month, and am tolerating the side effects as well as I did with the chemo. I have a PET scan scheduled December 28, 2022. My biomarkers had shown the Cisplatin was hard on my kidneys. I am scheduled to take Imfinzi through March 2023. I am anxious to hear from other people and medical professional with an interest in this cancer.

Jump to this post

Hello, my husband is scheduled to start chemo right after Christmas, long medical history, started with chemo, then the wipple surgery they thought he had pancreatic cancer when they opened him up and could not do surgery it had spread. So repaired a huge herina and closed him. The surgen switched to bile duct after surgery. He has had many side effects related to chemo not to mention E Coli in his baldder and is now filling up with fluid for unknown reasons.. Hopefully he will soon be over these medical problems. His quality of life has been very poor, very sick. He will be on the same chemo drugs plus you have been and our surgon wants him to add Durvalumab to extend life. The Cisplatin will be given in 2 smaller doses to try to help him tolararate the drug. So we will see. Take care. One question why are they doing PET scans? Our Dr brushed it aside and said they were not the best for this Cancer. We are open to the best scans and would love to hear more on your doctors thoughts. We are just searching for the best care and we live in a small town.

REPLY

Finally someone else is dealing with this cancer is posting. I have finished my 6th round of chemotherapy, Gemcitabine and Cisplatin, infused 3 times a month. PET scans showed the cancer has not spread and is shrinking. I have transitioned to immunotherapy with Imfinzi. I have had 2 infusions, once a month, and am tolerating the side effects as well as I did with the chemo. I have a PET scan scheduled December 28, 2022. My biomarkers had shown the Cisplatin was hard on my kidneys. I am scheduled to take Imfinzi through March 2023. I am anxious to hear from other people and medical professional with an interest in this cancer.

REPLY
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