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.