My wife was diagnosed with ICC in March 2021 Australia
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Hi Genevieve,
It is good to hear from you again, and especially the good news that your husband is doing so well. Thank you for helping with doctor suggestions. The Cholangiocarcinoma Foundation posts a medical providers tool but our data source is U.S. based so it regretfully does not offer information on cholangiocarcinoma specialists outside the U.S.
Take care, regards, Mary
Sorry to hear you’ve had that wait, and best of luck with the Gem/Cis treatment.
First and third resections were done by Dr Charles Mosse in Canberra, and the second resection was done by Dr Charbel Sandroussi in Sydney, as Dr Mosse wasn’t available at the time. Both really good doctors.
Best wishes,
Genevieve
Thanks Genevieve. Great to hear your husband is clear for a long time. It would be good if you let me know the name of the surgeon for your husband. I also joined fb group which is also helpful.
Unfortunately we were told earlier this week my wife is not eligible to join the clinical trial after we have been waiting for a couple of weeks. One of the criteria to join the trial is only 1 type of cancer is diagnosed. Previous CT showed a thyroid node and pathology result we got last week showed it is most likely benign. But the clinical trial team need either black or white answer which is not possible now. The worst thing for us is having wasted a couple of weeks without any treatment.
My wife will start standard chemo next week (Gem/Cis) in Peter Mac Melbourne. Hopefully it will help shrink the tumor.
Hello Gli50,
I’m sorry to hear of your wife’s diagnosis and hope her treatment goes well. We’re in Australia too but not on the A/NZ group Moowal mentioned. I think my husband used to look at the fb group but probably doesn’t now. It’s nearly 10 years since his ICC was first picked up – original tumour was over 5cm and had spread within the liver.
In case you are interested in additional opinions re surgery at some time – he has had three resections, plus a microwave ablation and two lots of chemo. He’s currently been clear for over 5 years. I presume you are at a big centre anyway if you are going with a clinical trial, but if you want names of the surgeons I can let you know.
Best wishes,
Genevieve
I believe your decision to proceed with the trial now and use the time to get genetic testing done is a good one, especially in light of how urgently the clock seems to tick as you wait to start treatment. I have my fingers crossed that the combination will result in a strong and durable response for your wife.
Thanks moowal, bglass and Hannaha for your kind and useful advices.
We’ll start with the clinical trial and at the same time check genetic mutation to have a plan B.
Dear Gli50,
Let me just say that both vtkb and bglass have made great suggestions, and it is great to know from moowal that there is an active community of patients and caregivers in Australia! Knowing if she has actionable genetic mutations is a really useful thing (my mother, who has ICC, turned out to have the IDH1 mutation, and is currently taking a targeted therapy for it). Knowing her genetic mutations will also help you to keep an eye out for new therapies and clinical trials down the road. This is where a lot of exciting new research is going on right now. bglass’s reference to the addition of Abraxane is also great. The 3-part cocktail is a more aggressive treatment and I have read that for some people the side effects can be rough, but it has shown real promise in knocking back the disease. And unlike the third ingredient in the clinical trial you’re presently looking at, it appears to work across the spectrum, regardless of what a patient’s genetic profile looks like.
Your wife’s doctors’ suggestion of the clinical trial with pembrolizumab (keytruda) + gem/cis is also potentially a good option. For a very small percentage of patients whose cancers have a particular genetic profile, keytruda has proven spectacularly effective (for the vast majority of patients, it seems to have little effect). It seems like the trial’s goal is probably to see whether adding keytruda to an established chemo treatment will help widen its range of potential effectiveness. But even if the keytruda turns out not to play much of a role (or if your wife winds up in the placebo wing), your wife will still be getting a proven treatment while under the careful supervision of clinical trial coordinators who will likely be keeping a closer eye on her than if she were receiving that treatment outside of a trial setting. My mom was first diagnosed in August of 2018 with unresectable intrahepatic cc, and it was while she was in the control wing of a clinical trial receiving gem/cis that she experienced substantial shrinkage of her tumor, enough to continue on to a resection in February of ’19. She had a recurrence a year later, but we are still very happy about the decision to participate in that trial. There may also be other trials worth looking at as well.
Hi Gli50,
Welcome to our community. I am sorry to hear about your wife’s diagnosis, and hope she has been able to identify medical providers who have experience with our rare cancer.
Chiming into the good advice you have heard from other board members, our patients are encouraged to look into genomic profiling of their cancer. We have had a few patients who have reported doing well with pembrolizumab, but they tended to have a specific mutation that responds to this treatment. If your wife knows the genomic profile of her cancer, this information can help in making treatment decisions.
Gemcitabine plus cisplatin is the most typical first line chemo prescribed for unresectable patients. It has a decent track record for stabilizing the cancer for many patients. A lot of patients and their caregivers who have posted on this board have been treated with gem-cis, so if you search the board for the chemo ñames (or any other treatment name) you can find stories of patient experiences with that treatment.
Our colleague Gavin posts medical articles about cholangiocarcinoma treatment advances, which patients can then ask their doctors about. One treatment that has been added to gem-cis with promising early results is abraxane. This is an example of a treatment option your wife may wish to ask her medical providers about, to see if it something potentially beneficial. Here is an article Gavin posted on this combo treatment. https://www.curetoday.com/view/addition-of-abraxane-to-standard-of-care-may-prolong-survival-for-advanced-biliary-cancers
The Cholangiocarcinoma Foundation website has many resources for newly diagnosed patients and their families.
Please stay in touch and send any questions our way. Because our cancer is rare, it can be hard to find information. The patient and caregiver groups on social media are additional ways to find information and support.
Take care, regards, Mary
Hi there, I live in New Zealand and was diagnosed 8 years ago. I am 8 years NED. I am so sorry to hear about your wife.
There is an Australian/New Zealand site that may be of interest to you. Please email me directly on moo1426@xtra.co.nz or find me on Facebook and PM me and I will forward you the details.
Cheers
Mandy Wallace
Thanks for your reply vtkb.
Yes, biopsy has been done but not for genetics mutations. We will ask for this when we see oncologist this Wednesday. I have been thinking about a second opinion but haven’t seen other oncologist/doctor so far. Thanks for your reminding, we’ll do it ASAP.
I hope your wife is going well. All the best.
I’m sorry to hear of your wife’s diagnosis. I’d advise her to join the cholangiocarcinoma warriors Facebook page to gather more stories from fellow patients. While I check here periodically, my wife (who has intrahepatic CC) only posts/checks the facebook page.
To answer your question a little- Gem/cis has been the standard first line treatment as far as chemotherapy goes. So the trial will test if adding Keytruda will be better or not than the standard treatment. Keytruda has helped some people with CCA (cured one that I can think of off the top of my head), but not everyone who gets it benefits from it. Has your wife had her tumor biopsied? If so, was it checked for genetics mutations? Depending on the genetic profile of her tumor, options (including keytruda) can be tailored to her tumor. Also, has she had a second opinion regarding the resectability of the cancer? It’s important to seek out a surgeon and oncologist who has a lot of experience with this disease- for instance in the US its better to be treated at a major cancer center, at least initially. This is still a rare cancer, so experience counts.
I wish you both the best – this journey unfortunately becomes a rollercoaster quickly. Good luck!
Hi everyone,
I am new to this website and hopefully can learn from you.
My wife was diagnosed with ICC last month in Australia and doctor told us it’s unresectable. It was like a nightmare as she is only 39 years old and our kid is in kindergarten. Doctor advised my wife to join a clinical trial (Pembrolizumab Plus Gemcitabine/Cisplatin Versus Placebo Plus Gemcitabine/Cisplatin for First-Line Advanced and/or Unresectable Biliary Tract Carcinoma). Not sure if this is the best option for us? My wife has 50% chance of being treated with Pembrolizumab. Has someone been treated with Pembrolizumab and how did it work ? My wife needs to do some tests before she can start the treatment which is probably the end of this month.
Thanks for this website. I find it very useful.
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