Forum Replies Created
First, let me say how very sorry I am for your loss. CC is a terrible disease and there are many of us left reeling from the aggression of this cancer.
I wanted to let you know that there is no problem at all in sharing information. In fact, I spend time everyday copying links from this discussion board to a number of CC Support groups in Facebook – it doesn’t really matter how patients and their families get the information as long as we can provide it.
I lost my son to CC. I joined the Loss of a Loved One to Cholangiocarcinoma FB group and, like you, received so much care and support.
I am so sorry that your sister and her little one are having such a torrid time.
My son was diagnosed at stage 4 with little chance of success because the CC had already spread to his lymph nodes. He undertook Yutrium 90 (Y90 or SIRTs) which are radioactive beads inserted directly into the liver. If she was a transplant candidate it might be worth asking her team if this could drive back the cancer long enough for her to get back on the list.
In our case, the Y90 was only ever palliative but it gave us an extra 6 months with our son in which he was well enough that strangers would have not known he was ill. The procedure was expensive but minimally invasive (done through angiogram).
Again this was palliative but Joshua also had an Aruyvedic doctor – she didn’t claim to able able to cure the CC but her treatments gave him a lot of relief from the symptoms and side effects of treatment.
Again – I am so very sorry that CC has entered your family’s life.
I am so sorry about your Dad. In terms of the request for information I am assuming that, since you are here, you’ve been through all the material for the newly diagnosed on the website.
If you are a Facebook user then I found the Changiocarcinoma Caregivers Support Group (https://www.facebook.com/groups/170301816796010/) a gold mine of information with lots of members who are abundant with their knowledge. I’ll post your note in the various groups and ask the FB community if there is anyone who can give you advice.
This reply came from the cholangiocarcinoma caregivers group on FB:
My husband has had 2 liver resections and was put on Xeloda after the second one and unfortunately still had a reoccurrence 9 months after 2nd resection. He’s a patient at md Anderson and Dr Javle did say Xeloda has shown to help prolong a reoccurrence. My husband had clear margins both surgeries with no lymph node involvement.