Topic: My dad

Hi! My 74 year-old dad was diagnosed with cholangiocarcinoma late last week. Our story is long, but when he presented with symptoms (itchy, janundice, etc) in March while wintering in Florida he also suffered a heart attack following the stent placement via an ERCP. We chartered Mayo's MedAir and took him "home" (they're from Northern Iowa).

After several ERCPs where they have replaced the stents and done the cancer tests (including stainings and brushings) at Mayo they were unable to find the reason for the stricture...until last week.

The doctors said that due to the condition of Dad's heart (he needs triple by-pass surgery) that he's not a candidate for surgery. We have an appointment with the oncologist later this month and I have so many questions!!!!

The surgeon and gastro doc at Mayo indicated that most with cholangiocarcinoma live just 18 months or so. True?

If Dad's cancer can only be found via the brushings/stainings, is it early? The MRI showed nothing in any of the organs, etc. Is it contained to just the bile duct? Have we burned thru 5 of the 18 months that Dad may have left? Where will the cancer go next? What is the balance between quality of life and extending life regarding chemo and radiation? Do the radiation seeds work in this instance?

My family and I are experiencing the feelings of shock and denial now. We've gone all these months without the docs being able to FIND the cancer to a timeline of 18 months. How can this be?

I'm grateful to find this website and a means of support. Thank you and I look forward to learning from all of you!

Suzanne

Re: My dad

Dear Suzanne,
My husband had a klatskin tumor(at the bifurtcation of the ducts inside the liver) with no spread in the liver or elsewhere. He had 5 weeks of IMRT radiation along with Xeloda , followed by brachytherapy. His tumor can no longer be seen by scans or MRIs. The only difference with your Dad and him is that his was very visible before the treatments. He really didn't have too many negative side effects from the radiation or Xeloda. His main problem was from infections invoving his stents and drains. I am a believer in radiation if done by very experienced professionals. I know he would not be doing as well if he was given chemo alone.Try to help your Dad keep up his strength and maintain his immune system. That is very important with the cancer and his heart disease. Best wishes and God Bless. Mary

Re: My dad

Hi,
My name is Charlene and my Husband John has bdc, ( cholangiocarcinoma or commonly called Bile duct cancer. ) He was dx'd in Feb. 2005. They found the tumor only by doing an ERCP with tumor brushings. They did all the ct scan, mri the whole nine yards before doing the tumor brushing.
He was also given 18 months to live, He's still here but is now going down hill due to metasteses to the liver and lymph nodes.
He had stent placement, photo dynamic therapy, internal radiation. That is what has kept him going for so long.
We saw Dr. Ian Renner in Los Angeles, Ca.
If your Dr. says there is no hope please give Renner a call. I send all my hope to you and your family. Stay upbeat as much as possible for your Dads sake.
DON'T GIVE UP!!! As long as there is life there is hope.
Charlene

4 (edited by JeffG Sat, 11 Aug 2007 17:04:19)

Re: My dad

Hi Suzanne... My name is Jeff.  About 25 years younger than your Dad and have been battling cholangiocarcinoma for 8.5 years.  It's hard to give advice not knowing your Dad and his complete medical condition.   I can say only from experience that when a severe heart condition exsist it really complicates everything.   My Dad had all 4 main arteries 85-95% blocked  and they could not do surgery. Due to the arteries being so brittle that even trying a multiple by-pass would have ended his life.  4 months later in a nursing home he passed away.   I say this because chemo can be extremely cruel to your viens and arteries and could surely cause fluxcuations in blood pressure high or low.  Also, would certainly be of higher risk of internal bleeding just from rupture.  Suzanne, as far as time line of life expectancy it is so individual.  Your overall health and how far advanced the cancer is plays a big role and also a positive attitude as well as one could expect comes in to play.  If your Dads symptoms have been relieved by replacing his stents and they can't see anything elsewhere and he has been living somewhat quality then hang to it.  Radiation Ihave had external no beads on two occassions.  Beads can be pretty tough post two weeks from what I have heard.  Suzanne,  Have you consulted with a heart surgeon about the effects of chemo or radiation?  I'm sorry about your Dad's situation and if it was my Dad I would love him and support him with what ever he wanted to try but But if I had full say I would not put him through the living hell of chemo.  I'm sorry for being so blunt but I have been doing chemo for three years now and it's a roller coaster of discomfort and bad pain you would not believe.  God Bless your Dad and you and the family, But unless I missed something completely your Dad has a better chance of surviving longer by just keeping the blockage clear and not trying any chemo or radiation beads, especially if he had a heart attack just replacing the stent.  You might ask about a different kind of stent, I think it is called a coil type that helps with keeping blockage clear.  Others members on this site have more knowledge about which type of stent is preferred. Again , I'm so so sorry to hear of your Dad's condition and can only pray and wish for the best outcome.  Everyone on this site understands the shock and anger and the whole cycle of emotions you are going through.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My dad

Thanks to all of you for your advice and support! We met with Dad's gastro doctor and heart doctor yesterday at Mayo. The gastro doctor just gave an overview of treatments - said the oncologist would tell us more on Friday. When I mentioned Photo Dynamic Therapy (PDT), the doctor said it is a distinct possibility. Additionally, we learned that Dad's cancer is extrahepatic and that the last MRI showed that the organs are clear.

To clarify...Dad's heart attack occurred following the ERCP because the docs in Florida nicked him and he bled internally and they didn't know it until they went back in (post heart attack) to repair. He was in perfect health before all of this.

Dad's cardiologist met wit us and said that Dad could most likely withstand chemo and radiation drugs, but I hadn't thought of some of the things you mentioned here. After reading about the awful side effects and potential vascular problems with chemo, I'm more intrigued by the PDT and other possibilities.

I'll let you know what happens after Mom & Dad meet with the oncologist. As of now, my brother is going with them to the appointment and then as a family we'll decide how to proceed.

We are a faith-filled family and have much hope because we believe that this diagnosis has to be EARLY since none of the organs are involved. True?

Thanks again for everything.

God Bless!
Suzanne