Husband has CC (we are in Victoria, Australia>

Hi Mandy,
I am so sorry , sad, and in shock,read about your husband. How very scary for you all. I am so,sorry that he was not able to have surgery and is suffering so much.
I am also in Victoria, Australia and just had my surgery on 9january at frankston hospital by dr Charles pilgrim….he usually works out of Alfred but removed my tumour at frankston which is closer to where we live. I am going for my first oncology visit on 20 February to find out,what kind of chemo I will be having.

I just wanted to say hi to you and I hope you can get some help for your husband.
Like him I am otherwise perfectly healthy…..such a horrible shock.

Big hugs to a fellow Aussie,
Mary

Hi Mandy,

Sounds like your husband is in good hands. I hope the radiation hasn’t been too difficult to take and works really well for him.

Here are the contact details for Caris in Australia:
Email: cariscare@carisaustralia.com.au
Phone: 1300 308 213 or 02 8014 6637
Web: http://www.cancerprofiling.com.au

I’d also sent an email enquiry to Foundation One and they sent a lengthy reply, but the nurse from Caris phoned me directly, had a long conversation, and it seemed much easier to have the local office to help plus the testing panel seemed extensive.

All the best,

Genevieve

Hello Mandy,

I’ve just seen your post and am sorry to hear about your husband, it sounds like you have been through a lot. Mine is the same age as yours and has also had CC. He has been fortunate though to have had three liver resections, most recently in July this year. I’m sure you have good cancer care in Melbourne but if you are after a second opinion, we saw a medical oncologist, Dr Peter Grimison, in Sydney, after the second surgery (done in Sydney because his local surgeon was away). Dr Grimison is at RPA or has private rooms. At the time he mentioned that they had a CC trial going. One of the doctors in Sydney also said that there are very good radiation people associated with RPA.

The other thing we did after the recent surgery was had molecular testing done through Caris Life Sciences. They have an office in Sydney and a very helpful oncology nurse who phoned us and organised everything, followed up, answered questions, very good service in my opinion. The report comes with a clinical trials connector so you can see online what trials in Oz or elsewhere might suit. I can give you contact details if you want them.

I hadn’t heard of the GI Cancer institute (so thanks for that) but saw that they are in Camperdown so presumably associated with USyd and/or RPA.

Best wishes,

Genevieve

Hi Mandy,

Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear about your husband. But glad that you have joined in with us all as you are so in the best place for support and help and I know that you will get loads of each from everyone here.

Thanks for sharing what has been going on with your husband, you sure have been through so much with everything already. And major GRRRRRR to that onc with that attitude!!! You are so doing the right thing in looking for help for your husband and please do not be put off from doing so with that terrible attitude from that onc. Have you sought second or third opinions as to treatment options?

Keep coming back here Mandy as you are around people who so know what you are going through right now and how you feel. We are here for you and will do our best to help and support you.

My best to you and your husband,

Gavin

One thing to keep in mind is that there are very few trials specific to cholangiocarcinoma, but there are some that still accept cholangio patients. For example, some trials target a general category of “solid tumors”

Here are two trials that are recruiting in Victoria that only require solid tumors:

http://clinicaltrials.gov/ct2/show/NCT01292655

http://clinicaltrials.gov/ct2/show/NCT01986218

I am very sorry and frustrated that you can’t get better help finding and better access to clinical trials. Without cholangio patients participating in trials, making progress fighting this disease will be very slow.

Jason

blodynbach, welcome to the best place to be for CC support. I am so sorry for what you both are going through as I know when you first got the diagnosis you felt hit by a train and now you are being hit again with a bat. What you want is an understanding but aggressive ONC. I would definitely get another opinion. There are also other chemo options out there. We have a member who is a Nurse, I think in Australia and she peeks in here now and then and hoping she will come aboard with some info for you. Her name is Janet.
In the meantime I know it may seem strange but listen to your gut feelings as they will not steer you wrong. We are all family here so please come on to ask and vent and know that we truly care.