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

Hi Keiran86, welcome. I moved your message to this existing discussion group in the Cancer group about cholangiocarcinoma (https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/). I did this because I wanted to help connect with other members who have experience with bile duct cancer like @lberg @jerrydrennan @lisamb @mngardenaddict @mcarrel @afrancesca @chicory2010 @clarke6 @summer83 @tball3748 @wjdemarco and others. Click VIEW & REPLY to scroll through past posts and learn more about the stories of others and treatments they've had.

Here's another related discussion that may also interest you:
- Bile Duct Cancer Scare https://connect.mayoclinic.org/discussion/bile-duct-cancer-scare/

Kieran, is this a new diagnosis for you? What treatment options are being suggested for you?

Anyone have this and if so what kind of treatments did you go through?

thanks for ,your response, for some reason I have no tumor perhaps because it was caught early but suspect that may be coming . I am on Gem/Cis since November as well, getting second opinion this week and they have me in the database for genetic trials so maybe will learn something more.

The side effects aren’t as bad as I read them to be (so far). Definitely more hair loss, a bit tired the first day of my 2nd cycle. Mostly very dry eyes when I get up in the morning and dry mouth. I found a FB page for other patients taking Pemazyre and got product info on eye drops and mouth spray. So far so good.

Yes I’m waiting for my next scan. I had done the gem/Cis chemo Sept - Nov then I was approved to start a targeted therapy called Pemazyre since I did the genetic testing and they found I had the FGFR2 mutation. 30% chance that this will shrink my tumor, so I figured, stay home, take a daily pill and get odds better than winning the lottery….why not, right?

Hi @wjdemarco. I see you sent meant this message for @tball3748 but without the @ sign they might not see this message so I’ve reposted it for you.

“ hi @tball3748 I was just diagnosed in November and would like to stay in touch @wjdemarco”

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

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

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.

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?