Newly diagnosed in Australia
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Hi there, I am new to this blog and thought I would share our experience in Australia. My husband is 45 and was diagnosed 8 months ago with extra hepatic CCC (probably Gallbladder primary) with liver and lung secondaries. It was only discovered when he presented with a DVT (and PE to his lungs) unfortunately because of the lung secondaries he is not being considered for surgery. (we went to sydney for 2 surgical opinions – Dr Charbel Sandroussi and Dr Haghighi RPA)
He had SIR spheres inserted January and tolerated these well, the large liver tumour was successfully treated and his liver regenerated to compensate. At the same time he had GEM/CIS and his tumour markers dropped immensely. We had disease stability until 2 months ago when repeat MRI/CT scans showed disease progression. In the meantime we got our onc to send pathology to CARIS in the states for advanced tumor profiling. He is now on a new chemo which is a combination of what our onc thought was next in line and what CARIS thought might be beneficial. The difficulty is that he has peripheral neuropathy in his feet which restricts what chemo can be used.
We are really fortunate in that he is remarkably well and even though his liver tumor burden has increased his liver function is going ok. He still works, exercises and plays with our 9 year old… it has been difficult getting co-ordinated treatment and information probably because it is a rare cancer although I don”t accept this as an excuse.
We are now requesting to go to Melbourne to the Peter McCallum Cancer Institute to get another opinion and this is with the support of our onc. I will try to keep updating our progress via this blog. Best wishes to you all.Hi Aussie83,
Im really sorry to read all this. I also remember the overwhelming feeling of CC and what was happening, and looking for advice, and feeling very isolated in Australia ( Im in Melbourne) etc I can’t answer your questions ( I don’t understand what the stats mean) but I hope that you are feeling that you have more understanding and can ask the people treating your MIL for advice and answers. I also have solitary intrahepatic cholangiocarcinoma and had surgery in January this year and 15 cycles of gemcitabine. ( Still got 3 more to go) I didn’t seek a second opinion as I had very faith in my surgeon. I was very lucky that he was able to remove all the tumour. I guess you have to go with what you and your family feel comfortable doing. You’re right, its not something that us Aussies feel comfortable with( asking a second opinion) , but I would like to emphasise that this is about your mother-in-laws life, so don’t worry about offending the doctors…i am sure they will cope
Best of luck and big hugs to you and your family,
MooseHello everyone,
An update since March this year. My mother-in-law has now had 3 cycles of gemcitabine plus cisplatin, with little response. The tumour stayed the same size. In late May, she had Sir-spheres inserted into her liver, and the PET scan to determine response will be in mid-July.
Meanwhile, she has had molecular testing results come back from Foundation One. Four genetic changes were identified (FDA-approved therapies in other tumour types are in parentheses):
– CDK4, amplification – equivocal (Palbociclib)
– ERBB2, amplification – equivocal (Ado-trastuzumab emtansine; Afatinib; Lapatinib; Pertuzumab; Trastuzumab)
– IDH1 – R132C (Azacitidine; Decitabine)
– APC – A2122_C2123insA (none)My MIL’s oncologist believes that the ERBB2 and IDH1 genetic changes hold the most potential for targeted therapy. I was wondering if anyone on this board also had one or both of these changes with their molecular testing? If so, which chemo agent(s) worked best?
Thanks in advance!
Kind regards,
Aussie83Aussie…..agree with your in-laws – one step at a time. Stay positive and tons of good wishes are heading your way.
Hugs
MarionHi Darla, Lainy, Genevieve, and Marion,
Thanks for your words of advice and good wishes. I’ve been looking around on this site (including using your links), and the CC Foundation and the members of this discussion board provide a wealth of information in this scary time.
The plan for my mother-in-law is to see what the CT scan shows after her first 2 cycles of chemo. Then, depending on what her surgeon says about operating or not, we will possibly seek a second opinion. My MIL and FIL are not keen to get a second opinion at this stage, and we want to respect their wishes.
We’ll ask her oncologist again about molecular testing.
I’ll definitely keep people updated on how things are going.
Aussie83Aussie…welcome. I echo the above comments and thought to include a link to archived postings containing the word: Australia. Hope it is of help to you.
Hugs,
MarionHi Alison,
Sorry to hear about your relative. I am from Oz and thought I’d say hello. I saw your post earlier but didn’t reply because I can’t really answer your questions. My husband had his second resection in Sydney (he’s had three, currently clear) and we had molecular testing done after the third resection. We’ve had good experience with surgeons and oncologists .
Best wishes,
Genevieve
Hello Aussie83 and welcome to the best place to be for CC support. Sorry, I usually jump right on the new posts but had an infusion today and it knocked me out! Now I can’t fall asleep so got on the computer. You are in the correct Discussion which would be Newly DX. It seems that the first line of treatment is usually GEM/CIS and we have had Stage IV patients with reduced tumors eventually having surgery. We love the word surgery. BUT, we are big believers in 2nd and 3rd opinions. Different eyes see different things. We do have patients who have had transplants, some were even told no at first, and they are doing well. I know you will be getting some more answers and we do have some other Aussies whom I hope will be answering. Hang in and hang on for this crazy ride. Please keep us posted as we do truly care. I am copying over some sites you may want to take a look at. Also, at the top of the page if you enter a word or 2 some posts will appear on that subject. Best wishes
Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/Hi Alison,
Not sure why you haven’t gotten any responses yet, but would like to welcome you and let you know that you did come to the right place and are posted in the right section. I don’t have a whole lot of answers for you, but I’m sure others will agree that a second opinion is always a good idea. Sometimes even more. Don’t worry about offending the doctors. A good doctor will welcome another opinion. This is a rare cancer and you need to do what’s in her best interests, so you want doctors that are familiar with CC.
There are several members from Australia, so I am hoping for some of them to chime in to help answer some of your concerns. There are a lot of good people on this board who are willing to help and support you in any way that we can. Hopefully you will be hearing from some of them soon.
Sorry that you and your family have to be here, but glad that you have found us.
Hugs,
DarlaHi again, everyone,
Just wondering if I’ve posted incorrectly, as I haven’t had any responses to my introductory post?
Our family would really appreciate any input, whether you’re from Australia or anywhere else in the world!
Thank-you!
Hello everyone,
I am new to this board. My family is based in metropolitan Australia. My relative is 72 years old and has just been diagnosed with a 9.9cm solitary intrahepatic cholangiocarcinoma. The tumour originated in the right lobe of the liver, but has pushed into the left lobe and is close to the portal vein (we don’t know if it has invaded the portal vein or not), making immediate operation difficult. Her liver function tests are slightly elevated, but she has no hepatitis or cirrhosis. Her tumour markers were all normal. CT chest / abdo / pelvis suggest no macroscopic spread outside of the liver. She has no other significant medical conditions.
The surgeon and oncologist – who both operate out of a major teaching / tertiary referral hospital – have recommended neoadjuvant systemic chemotherapy (gemcitabine plus cisplatin). They believe surgery will be possible with a 20% reduction in the tumour. My relative had her first dose of chemo a few days ago. She will have a follow-up CT abdo after 2 cycles (ie. in about 6 weeks’ time) to determine whether the cholangiocarcinoma can be surgically removed.
We were told that liver transplantation is not a viable option, as cholangiocarcinoma can often have microscopic spread beyond the liver. Once a transplant is in place, the immunosuppression required would allow any distal cancer cells to grow out of control.
I have a few questions:
1. Do you know of liver transplantation in similar situations, ie. with a large, solitary intrahepatic cholangiocarcinoma and no macroscopic spread beyond the liver?2. How important is it to seek a second opinion, either here or overseas? There isn’t really a culture of doing this in Australia, and we are wary of offending the original doctors, who we respect a great deal. But could a different surgeon perhaps operate, even if a 20% reduction in tumour size isn’t achieved with chemo?
3. How important is it to get molecular testing done on the tumour tissue? We were told that this is not routinely done in Australia.
Thanks in advance for your help!
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