My wife was diagnosed with ICC in March 2021 Australia

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

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.

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.

• This reply was modified 3 years, 8 months ago by Hannaha.
• This reply was modified 3 years, 8 months ago by Hannaha.

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

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!