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.

lozierpam54 | @lozierpam54 | Dec 25, 2022
In reply to @7judy2 "Hi, i have been to MD Anderson Cancer Center in Houston in 2006 but it was..." + (show)
@7judy2

Hi, i have been to MD Anderson Cancer Center in Houston in 2006 but it was for Uterine Sarcoma Cancer. The doctors I had were wonderful. My cancer was stage IV. Ive been doing well since 2006. Today I have other health problems not related to that cancer. I met many people undergoing different treatments (at MD Anderson )for all kinds of cancer. I met a husband and wife who’s husband had been transported on a gurney from CA because he couldn’t walk and had been given less than 6 months to live. He was happy, walking, on his way home after successful stem cell therapy. I also met someone who came from a small town where the local hospital had removed prostrate and botched the surgery but MD Anderson could not repair the damage that had been done. I have nothing but good things to say about MD Anderson Cancer Center and the doctors/surgeons that i had.

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Thanks so much for sharing 🙏💕

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7judy2 | @7judy2 | Dec 25, 2022
In reply to @lozierpam54 "Has anyone been to the Anderson Clinic in Houston Texas?" + (show)
@lozierpam54

Has anyone been to the Anderson Clinic in Houston Texas?

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Hi, i have been to MD Anderson Cancer Center in Houston in 2006 but it was for Uterine Sarcoma Cancer. The doctors I had were wonderful. My cancer was stage IV. Ive been doing well since 2006. Today I have other health problems not related to that cancer. I met many people undergoing different treatments (at MD Anderson )for all kinds of cancer. I met a husband and wife who’s husband had been transported on a gurney from CA because he couldn’t walk and had been given less than 6 months to live. He was happy, walking, on his way home after successful stem cell therapy. I also met someone who came from a small town where the local hospital had removed prostrate and botched the surgery but MD Anderson could not repair the damage that had been done. I have nothing but good things to say about MD Anderson Cancer Center and the doctors/surgeons that i had.

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1 reply
John Lewallen | @jalewallen74 | Dec 24, 2022
In reply to @lberg "My name is Laura, and my children's father, & my ex of 20+ years just diagnosed..." + (show)
@lberg

My name is Laura, and my children's father, & my ex of 20+ years just diagnosed a couple weeks ago with ADENOCARCINOMA, most consistent with CHOLANGIOCARCINOMA or upper GI primary. Going to Mayo-Rochester, MN on the 15th. Would like to hear anything about others experience , if any.

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My name is John. My research showed that Mayo-Rochester is one of the top research facilities in the world for Cholangiocarcinoma Treatment. I live in Houston and am being treated here currently with Imfinzi immunotherapy. My cancer did not spread and my PET Scans show it is shrinking. I tolerate the side effects well. Feel free to share with me on this forum.

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John Lewallen | @jalewallen74 | Dec 24, 2022
In reply to @colleenyoung "Welcome to Connect. We look forward to getting to know more about you. I'd like to..." + (show)
@colleenyoung

Welcome to Connect. We look forward to getting to know more about you.
I'd like to first introduce you to Teresa @hopeful33250. While Teresa doesn't have bile duct cancer, she has had 3 occurrences of neuroendocrine tumors and knows what it is like to get repeated diagnoses and treatments. While wait for other people with bile duct cancer experience, I'd like to get to know a bit more about you. What treatments have you had in the past and what treatment are you currently receiving? How are you doing with the treatment and its side effects?

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I am John, living in Houston. I was diagnosed with Cholangiocarcinoma a year ago. My first indication of a problem was, "I've fallen and I can't get up" lol, just like the TV add. I went to my primary doctor, had a blood test which came back with a biomarker showing too much Calcium. A biopsy and then a PET Scan showed 3 Bile Duct Lesions. Fortunately the cancer had not spread. My Oncologist started me on Chemotherapy Infusions of Gemcitabine and Cisplatin which proved to be hard on my kidneys. I had a port implanted for the infusions. I am now on the Immunotherapy drug Imfinzi which is less toxic than chemo. These treatments have kept the cancer from spreading and the 3 lesions are shrinking. My side effects are the same for both types of treatment. For 3 days I don't want to eat or drink plain water. I'm tired, sleepy, have brain "fog", confusion, forgetfulness and muscular weakness, restless sleep and rest when needed. Lights and sounds are bothersome. I hope this helps and feel free to contact me on this forum.

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lozierpam54 | @lozierpam54 | Dec 24, 2022
In reply to @colleenyoung "@lozierpam54, good to hear from you and get an update on your husband’s diagnosis. With his..." + (show)
@colleenyoung

@lozierpam54, good to hear from you and get an update on your husband’s diagnosis. With his confirmed diagnosis of cholangiocarcinoma or bile duct cancer, I moved your messages to this discussion so you can connect with others like @jalewallen74 @rezmo @lovingwifeterry @billdemarco @tball3748 @reddino and others.

- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this

What treatments are being suggested for your husband, Pam?

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Thank you Colleen. It helps to hear from others sharing their experiences. Thanks to all 🙏💕

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John Lewallen | @jalewallen74 | Dec 23, 2022
In reply to @krishh "I have cholangiocarcinoma. I've been dealing with it for 27 months. What kind of questions do..." + (show)
@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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I also have Cholangiocarcinoma and having good results with Chemotherapy and Immunotherapy. I also will be glad to correspond with anyone on this forum. John

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John Lewallen | @jalewallen74 | Dec 23, 2022
In reply to @krishh "@hopeful33250, @colleenyoung - thank you for your responses. I do have a strong support system. I am a..." + (show)
@krishh

@hopeful33250, @colleenyoung - thank you for your responses. I do have a strong support system. I am a 57 year old widow with no children, but I do have sisters and friends in the area who are extremely supportive. After removal of a large tumor in May 2015, I went on Gem Cis rather successfully until I had a terrible reaction to Cisplatin during my 15th treatment. I then was on a break for a while. Scans started showing progression, so went on FOLOFOX in Oct 2016. Did not respond and started having side affects. Then switched to FOLFIRI but had much toxicity - horrible side affects. Since early March, I have been on Xeloda (Capecitabine) and Gemcitabine with moderate success. Last scans showed no progression of disease and the side affects are almost non-existent - I'll take it! Next scans will be in August. I've been rejected for two immunotherapy trials. My doctor has suggested that 'typically' Xeloda/Gem combo lasts around 9 months. I'm just looking for someone who may have had similar treatments and wondering if there is a "What's next"? From what I've heard from oncology and my own research there is not much left to try in my case. I'm at peace with this if this is the reality, but I wanted to reach out to this platform to see if there is more to learn. Thank you for letting me share my story with you! Kris

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Thanks for your post. I had good results with Gemcitabine. I was taken off of Cisplatin because it was too hard on my body. My Cholangiocarcinoma did not spread and the 3 lesions are reduced in size as confirmed by PET Scans. My Oncologist has stopped the chemo and switched me to Imfinzi. Stay in touch. John

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John Lewallen | @jalewallen74 | Dec 23, 2022

To be honest, I love the change to Imfinzi infusion once a month with nothing else but a small bag of Imfinzi taking 1 hour. With chemo it was 2 bags of chemo drugs, 2 bags of saline and 3 hours 3 times a month. I have a port which makes the infusion less painful than getting a pic needle infusion. My side effects of Imfinzi are similar to the chemo but only once a month and I am use to them. Food aversion, fatigue, brain fog, confusion, forgetfulness, trouble finding the correct spelling of words and finishing sentences. I take rest as needed. My side effects last 2 or 3 days. Stay in touch.

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lovingwifeterry | @lovingwifeterry | Dec 23, 2022
In reply to @jalewallen74 "I also have Cholangiocarcinoma and live in Houston. I have received Chemotherapy consisting of the drugs..." + (show)
@jalewallen74

I also have Cholangiocarcinoma and live in Houston. I have received Chemotherapy consisting of the drugs Cisplatin and Gemcitabine for a year. This treatment has been successful in keeping the cancer from spreading and reducing the size of the 3 lesions I have as revealed by the PET Scans. Recently my Oncologist has switched me to Immunotherapy using the drug Imfinzi which is not so hard on my kidneys and uses the bodies' own Immune System. I receive my treatments with Genesis Medical Group which is closer to my home and transportation than MD Anderson. Of course MD is the best cancer hospital in the world and my daughter used them when when she needed surgery to remove her Thyroid Cancer. Feel free to contact me at anytime on the Bile Duct Cancer forum or here.

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Hello, so happy to
hear that you have done well on the chemo for a whole year! My husband was on other chemo as they first though he had pantritic cancer. Now that it is bile duct he is scheduled to start with the same chemo and Imfinzi as you. He has been through a lot with chemo being very hard on him and then the whipple which they couldn't complete because of spreading of the cancer. Please let me know how you are doing on the new drug and are you just on the Imfinzi? With all of his side effects I think he may be only on the Imfinzi also.

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lovingwifeterry | @lovingwifeterry | Dec 23, 2022
In reply to @colleenyoung "Welcome to Connect. We look forward to getting to know more about you. I'd like to..." + (show)
@colleenyoung

Welcome to Connect. We look forward to getting to know more about you.
I'd like to first introduce you to Teresa @hopeful33250. While Teresa doesn't have bile duct cancer, she has had 3 occurrences of neuroendocrine tumors and knows what it is like to get repeated diagnoses and treatments. While wait for other people with bile duct cancer experience, I'd like to get to know a bit more about you. What treatments have you had in the past and what treatment are you currently receiving? How are you doing with the treatment and its side effects?

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My husband as been dealing with bile duct cancer starting in April. A long road, now that the Wipple was aborted, we came home with many more problems. He got a E Coli infection that was very bad on top of surgery. Two rounds of antibotics and finally IV and another 9 days of daily shots to get him over it. Then he started retaining fluid. They pumped out 7 litres of fluid, he lost 15 pounds! He is very weak and doesn't want to eat. Chemo was posponed due to his illness. Getting ready to start again Dec 30. What can I do to help him get strong enough to start chemo again?

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