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krishh
@krishh

Posts: 18
Joined: Apr 07, 2016

Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

Posted by @krishh, Jul 15, 2017

I’m on my fourth line of treatment. What treatments are others receiving for this? Thanks ~

REPLY

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?

Liked by jerrydrennan

@krishh I appreciate your post. As Colleen said I have had 3 surgeries for NETs in the upper digestive tract and I understand how discouraging it is to know that you need to deal with it once more. Please feel free to share with us how you are doing and what specific questions we can answer. Do you have a good support system in place to help you through this time? Teresa

Liked by jerrydrennan

@hopeful33250

@krishh I appreciate your post. As Colleen said I have had 3 surgeries for NETs in the upper digestive tract and I understand how discouraging it is to know that you need to deal with it once more. Please feel free to share with us how you are doing and what specific questions we can answer. Do you have a good support system in place to help you through this time? Teresa

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@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

@krishh I appreciate all the details you have provided regarding your treatments and the way you have responded to them. I am sorry that you have had such a hard time with the treatments so far. Sometimes large medical centers who are research-oriented can provide some additional answers. Do you have a large university medical center nearby where you can get a second opinion? Or, are you able to consult with a Mayo location (Minnesota, Arizona and Florida)? Teresa

Liked by jerrydrennan

@hopeful33250

@krishh I appreciate all the details you have provided regarding your treatments and the way you have responded to them. I am sorry that you have had such a hard time with the treatments so far. Sometimes large medical centers who are research-oriented can provide some additional answers. Do you have a large university medical center nearby where you can get a second opinion? Or, are you able to consult with a Mayo location (Minnesota, Arizona and Florida)? Teresa

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Hi Teresa – all my treatments have been at Mayo. My surgery was at Mayo Rochester, MN and post surgery treatments have been in out state (Minnesota) Mayo branches. Feel very fortunate to have Mayo in my back yard! 

@krishh I am pleased to hear that – yes having Mayo in your backyard is a good thing! Teresa

@hopeful33250

@krishh I appreciate your post. As Colleen said I have had 3 surgeries for NETs in the upper digestive tract and I understand how discouraging it is to know that you need to deal with it once more. Please feel free to share with us how you are doing and what specific questions we can answer. Do you have a good support system in place to help you through this time? Teresa

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Kris,
You may be interested in following this discussion to hear other peoples’ experiences with Xeloda. I’ll continue to search for members who have had the Xeloda/Gemcitabine combination.
– Xeloda http://mayocl.in/2lSV5o9

Thank you Colleen – I will read through the thread on Xeloda.

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.

Liked by Lberg, jerrydrennan

@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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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

I have no idea what to expect in the near future, all we know is it is BAD! stage 3.

@lberg

I have no idea what to expect in the near future, all we know is it is BAD! stage 3.

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Mine is stage 4 and I have been living with it quite well for 27 months. Read my post above about my journey. I had a bad spell Jan-March this year that was the result of reaction to chemo as well as other infections, but other than that, I have basically been living with it, receiving treatment and living life. I know it won't last, but I'm doing better than what was initially suggested to me about the progression of this disease. So tell him to hang in there – I hope his progression is as slow as mine! Kris

@lberg

I have no idea what to expect in the near future, all we know is it is BAD! stage 3.

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Hello Kris @krishh

Thanks for your encouraging words!

Teresa

@lberg

I have no idea what to expect in the near future, all we know is it is BAD! stage 3.

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Hi My husband was just diagnosed with stage 4. He just started his first chemo this Monday. we don’t know about surgery yet. Were you able to have surgery to remove the tumor?
Mary

Hi Mary,
I had successful surgery in May of 2015, before starting chemo. Unfortunately in my case, the cancer had already spread to lymph nodes. I’ve been doing quite well and maintaining fairly good for 27 months. I recently have started experiencing more discomfort in my abdomen and chest. Scans were done earlier this week and I will get results this afternoon. I hope the chemo will shrink your husband’s tumor and that he is able to have successful surgery. Keep us posted and best of luck – keep a positive attitude and pray if you are so inclined. I believe both of those things have helped me along my way. Good luck – Kris

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