March 6, 2019 at 8:39 am #98273HannahaParticipant
I second what Mary just said so well. In the weeks after my mom was diagnosed last summer, we hunted around frantically for treatment options. Time took on a strange quality, and we hated every day that went by that we hadn’t gotten her on some kind of treatment. The waiting was agony. In the end, the best piece of advice we were given was to just get on the standard chemo (second-best piece of advice – get the port-a-cath installed!). Most of the clinical trials are for people who have ‘progressed’ after first being on the cis-gem (or similar) chemotherapy, and for good reason. The chemo is the thing that we know that works for many patients, and sometimes works very well. In my mother’s case, it worked well enough for her to go from an unresectable diagnosis in September to getting the surgery just last week. Regardless, it hopefully buys time to line up the next treatment plan, whether that be a clinical trial, chemo (or radio)embolization or similar, or something else.
From where I stand, the only real reason to put off getting on the chemo would be if, as Mary noted, MD Anderson doesn’t accept patients who have started treatment elsewhere. With this cancer, it is really valuable to work with a treatment team who know the disease and deal with it routinely.
I do not believe there is any problem with getting the genomic testing done after chemo has started (although obviously check with a doctor on that). My mom got the testing done before she started her chemo using material collected from her first (failed) surgery, and we were grateful to be on the chemo while we waited for the results. They took a LONG time to come back – I’m not sure if this is how it is for most or if it was just the way the wheels turned at her particular hospital, but we waited for something like 2 months!
As Mary said, the real promise for targeted / immunotherapies is still kind of around the next corner. However, there are some therapies becoming available which can absolutely make a difference right off the bat. A few people with CCA have tumors with ‘microsatellite’ or mismatch repair instability, making them amenable to treatment with the (sometimes very effective) drug Keytruda. More patients with CCA find that they carry either the FGFR2 or IDH1 mutations, both of which open up treatment possibilities using drugs that are either just coming out on the market or which have big Phase III trials recruiting.
That term – unresectable – is a tough thing to hear, but there are people on this message board who can testify that they have found ways to live with unresectable diagnoses for years. And there are others for whom an unresectable tumor can turn into a resectable one, either due to a positive response to treatment or because they find the right surgeon.
It sounds like you’re on the right track with things, though.
Best of luck to your dad and the rest of your family-
HannahMarch 5, 2019 at 10:10 pm #98269bglassModerator
The following is not medical advice, just an observation on what seems to be the case for many of our patients.
The typical first course of treatment for inoperable cholangiocarcinoma that has spread beyond its initial site is chemotherapy, usually a combo of two chemos – gemcitabine and cisplatin – which have proven effective in controlling this cancer. Doctors may offer a different chemo option if the individual situation of the patient so warrants. This is referred to as “systemic” treatment as it will attack cancer cells throughout the body. If the cancer is only found in the liver, local therapies may be looked at. I can post info on such therapies if this is the case with your father.
At the moment, the cholangiocarcinoma treatments that may be indicated if treatable mutations are found in your father’s genomic profiling are mostly only available through clinical trials. Many of the trials for these targeted treatments require that patients have first tried and failed a standard of care treatment such as the gem-cis to be eligible to join the trial. So very often targeted treatments identified through the genomic testing are not the first option, but become options later on.
Both the targeted treatments and the new immunotherapy drugs are of great interest to cancer patients. They offer hope of effective treatment with fewer side effects. My own observation is that these new approaches to cancer treatment while promising, are at this moment still in development and in many cases, not yet fully figured out. The science is evolving rapidly, but today for our cancer, the first round of treatment doctors typically suggest will likely be gem-cis or a similar chemo, or if cancer is only in the liver, one of the local treatments. These treatments are effective with good quality of life for a good number of patients. With genomic testing results in hand, patients under treatment then are in a position to scout next steps to be ready if and when the first treatment loses effectiveness.
There are exceptions to this, including a few trials designed to be patients’ first line of treatment and a few genomic mutations that are rare for cholangiocarcinoma but for which there are already FDA-approved treatments. Your medical providers will help your father choose his best treatment path given his circumstances.
Genomic testing requires a sample from a biopsy. If your father has had a biopsy, you can investigate if there is sufficient tissue for the testing. If MDA will be the treatment facility, you could contact the department where he will be seen to ask if they want you to try and organize the testing now.
I was unsure from your message if your father plans to wait to start treatment until he is seen at MDA or if he is thinking about starting treatment with his local doctors. I am asking about this because some of the major cancer centers will not take on new patients who have already started treatment in another facility.
I hope your father soon has a good treatment plan underway. Please keep us posted and send any questions our way.
Regards, MaryMarch 5, 2019 at 5:59 pm #98267TarheelllParticipant
Thank you so much Gavin and Mary. His cancer is unresectable so we are exploring other options. We got an appt at MDA but are also seeing someone locally in the interim.
He is obviously anxious to start treatment but we don’t want to take options off the table. Is the genomic testing feasible after he starts chemo? We have a sample from the biopsy that we hope can be tested but if it can’t I’m wondering if that would delay starting chemo.
Thanks again!March 4, 2019 at 7:03 am #98263gavinModerator
Welcome to the site. Sorry that you had to find us all here and sorry to hear what your Dad is going through now. But I am glad that you have joined us all here as you are in the best place for support and help and I know you will get a load of both from all of us here. Thanks as well for letting us know what you and your dad are dealing with here. I know how you feel as I felt the same when my dad was diagnosed back in 2008 and I came here too feeling like you do now. I’d never heard of CC until we got the news that my dad had it and I am guessing that that was the case for you as well.
You are doing the right thing in learning as much as you can about all of this as the better informed you are the better placed you will be to help your dad to deal with everything about this disease, treatment options included. There is a ton of info here on the site so please use that and do not be afriad to ask questions, there are no silly questions at all!
I hope that the insurance comes through very quickly and that you can get that app at MD Anderson and you will be in good hands there. Please just make sure that all of your dads med team are highly experienced in dealing with CC and patients with CC. Many are not that experienced and you want to be with those who do have lots of relevant experience to say the least! Keep coming back here Laura and let us know how everything goes.
My best to you and your Dad,
GavinMarch 1, 2019 at 11:18 pm #98239bglassModerator
Welcome to our community. I am sorry to hear of your father’s unexpected diagnosis. For many of us, this cancer is symptomless in its initial stages, and is discovered accidentally. Your father’s doctor is a hero for insisting that the vague symptoms be explored.
On the Cholangiocarcinoma Foundation website, there is a tool that can help you find medical providers with experience with our rare cancer. While MD Anderson is top notch, there are other great centers as well for cholangiocarcinoma. If you are having insurance or scheduling issues with MDA, you may want to look into other options as back-ups and there may be some closer to home if MDA involves travel.
One of the important concerns at diagnosis is to determine if your father would be a candidate for surgery. If the cancer has not spread outside of its initial site, e.g., in the liver or bile duct, it is imperative to get surgical opinion(s) from very experienced liver surgeons. Not every liver surgeon performs the complex surgery some of our patients need, and what is judged to be “inoperable” by one surgeon, may be feasible for another.
A second important consideration is to consider genomic testing, either in conjunction with any biopsies your father may be having or as part of the pathology after surgery. This cancer often involves specific genomic defects (mutations) for which there are targeted treatments available or in development.
Other board members may have additional suggestions, and there is a lot of good information for newly diagnosed patients on the Foundation website.
I am glad you have found us, and hope our community can offer good information and support as you and your father navigate the medical system.
Regards, MaryMarch 1, 2019 at 10:01 pm #98238TarheelllParticipant
First I just wanted to say how grateful I am for this organization and these posts. We are less than a week out from diagnosis, and it has already been such a good resource.
My dad (who just turned 69) was diagnosed with CC after complaining of some minor intermittent tightness in his abdomen. Our family physician insisted on a CT even though my dad has no other symptoms. He is very active and is baffled by this news because he feels completely fine.
To say this has been a shock would be a massive understatement. I’ve been reading everything I can about this disease and possible treatments. We are presently attempting to get an appointment at MD Anderson. The insurance piece is the hold up but we hope to have that resolved soon.
Would welcome any and all advice from those who have been this road. Thank you. -Laura
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