Topic: New to the forum

Hi everyone.  My name is Tanya and my husband, John, 57, was diagnosed with Hilar cholangiocarcinoma, also known as a Klatskin tumor on July 19, 2013.  His tumour is located in the Y of the common bile duct and is around 2 1/2 cm.  So far there is no spread (PET scan, CT scans, MRI, and needle biopsy of lymph nodes.  He is currently on the Mayo protocol for a liver transplant. 
He has had internal/external drains placed on both sides of his liver and this has helped reduce his bilirubin from 499 to 37 so that he can finally start the chemo/radiation regime.  He will need to have the drains replaced this week with metal stents before radiation begins, (hopefully in 10 days.)
We live in Toronto and are extremely pleased with the team of doctors that are working with us, but it's all rather overwhelming. 
It frightens me that the tumour was found in July but no chemo or radiation has taken place (because of the high bilirubin).  He's also had two infections since the placement of the drains but has managed to fight them off after time in the hospital on iv antibiotics.  Unfortunately he also developed C dificile during the last infection but that now also seems to be gone.   
Other than the cancer John has been the picture of perfect health and takes no medications for anything.  I guess he has that going for him. 
We have been married for 27 years and have three children 24, 21 and 16.  I am so thankful to have found this space to share thoughts and concerns.  As a caregiver I feel so overwhelmed at times and generally anxious about what lay ahead for John.  We are working hard to remain hopeful that he'll be able to get a liver transplant but in the back of my mind I am so afraid that it will spread.  I can't imagine life with out John, but I'm also incredibly grateful that we are together here and now.  Our entire world changed in the blink of an eye.

Tanya

Re: New to the forum

Tanya -
Let me be the first to welcome you to our wonderful little family here....no one really WANTS to be a part of it but we are anyway. My spouse just turned 50 in August and was diagnosed in May with hilar CC (Klatskin's tumor). Not sure how big his was but he ended up having a resection and lost 60% of his liver which has now regrown. The left lobe of his liver had essentially died due to the tumor blocking the bile duct. He had a drain placed prior to surgery which landed him in the hospital just prior to surgery but it cleared well with antibiotics. 14 hours or surgery and 12 days in the hospital later, he came home.
He is now on chemo of Gemcitabine and Oxaliplatin every two weeks and has had 4 rounds so far and is tolerating it well other than cold sensitivity. He has been hospitalized three times since the surgery for blood infections but we think (hope -finger crossed) that we are done with that.
There is no doubt that this is a roller coaster ride of ups and downs, twists and turns and you never know where you will end up.
My best advice is to make sure that the oncologist and surgical (of that becomes an option) team have treated and have a good understanding of the disease.
Good luck and keep us posted. Remember we are always here to answer those questions. Most of us has been there, done that.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New to the forum

Thanks for the warm welcome Kris. 
John's tumour is non resectable because it is in the bile duct that sits in the middle of the liver and is also resting against a portal vein.  A transplant is his only option for a cure.  He will be taking Xeloda (chemo) twice a day, 7 days a week in conjunction with radiation twice a day, five days a week, for five weeks. 
He started out with a PTCD only on the right side of his liver and a stent on the left side, but his left lobe is quite atrophied and the stent wasn't working so they put a PTCD on his left side as well.  They think the tumour started on the left side of the bile duct.
The team at Toronto General Hospital and Princess Margaret are all very familiar with Hilar cholangiocarcinoma and have replicated the protocol from the Mayo Clinic.  I didn't realize that it was a relatively rare cancer.  I think that John was very lucky with his tumour location because it presented with Jaundice overnight and was therefore caught very early.  Weird to see that as a lucky thing!
How wonderful that your husbands tumour was resectable! I have heard that everyone responds to chemo differently.  John was told that the most common side effect of Xeloda is hand food syndrome - very dry sore hands and feet that sometimes develop blisters.  We'll cross that bridge when we get to it.

Tanya

Re: New to the forum

Hi Tanya!
So sorry you had to find us.
I'm glad the drains are working for your husband, and he can start the treatment to maybe getting the transplant.
I just had a transplant a few months ago, so if you have any questions.....feel free to send me a message!
-Tiff

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: New to the forum

I just got a response from Cathy who has relatives in Omaha and good experience at wash u.  We are staying in a condo while getting second opinion and email crashed. 
Cathy please resend or call 402-637-6328 or 402-206-9614

Re: New to the forum

Tanya -
I am a nurse and went into this kind of blind. I had never even heard of CC before this and I deal with Home Health and Hospice. I had no idea how lucky we were that we had a resection and that it all happened to fast. He started have gallbladder symptoms April 25th and it was diagnosed on May 14th on a CT scan that was for something else. Then he jaundiced a few days later. His too was mostly on the left and only involved a small portion of the portal vein which they were able to resect out. The left side of his liver was atrophied too....doc laughed and said he practically used a chisel to get it out. Of course, my husband had Hodgkin's lymphoma as a teen so some of the problems and lengthy surgery were due to previous radiation.
And keep hope, resection might not be an option right now but we never know what they future will hold.
I am glad that you have a good team. Again we just kind of lucked into the group that we have but I have the best confidence in them....so much that has happened for us has been luck....the right kind.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New to the forum

Dear Tanya, welcome to the best little club in the World that no one wishes to join. It sounds like the ONCs are hopeful for a transplant down the road and that is the best news you could get. It does take some time and patience to get there. Princess Margaret Hospital is one of the finest places to be for CC. We like to stay "realistically optimistic" so try to take each day at a time and then be thankful for that day. You have come to the best place to be for this monster we call CC. Please keep us posted on John's progress as we truly care. You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.