Diagnosed two months ago
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Hi Jtallen,
I’m so sorry for your diagnosis. I would second what Mary has already said.
If you’re interested, you might want to look at some of my earlier posts regarding my mom (now 65), who was diagnosed with (depending on who was talking about it) either IIIb or stage 4 ICC back in Aug. of 2018. Like yours, her tumor also is IDH1 mutant. She went through an open-and-shut surgery in Sept. ’18 in which they determined she had multiple positive lymph nodes, went onto the gem-cis, did 6 cycles, saw significant reduction in the size of her tumor from (thank god i’m forgetting the fractional measurements now) but 10ish cm down to 5ish cm. She had a second successful surgery in Feb of ’19 with negative margins, did another 4 rounds of gem-cis, and was for a while free of the damned thing until it turned up in her lymph nodes again in Feb. ’20. After back-and-forthing and delays because of covid, she elected to go on Tibsovo. She has been more or less stable on Tibsovo since May of ’20, with excellent quality of life. I’m really glad to hear that you’re going to do a consult at Dana Farber. I encourage you to keep an open line of communication with more than one specialist, if you can, so that you can pose treatment questions to them if and when it is necessary. One of the things that has been absolutely crucial in my mom’s journey has been our ongoing conversations with specialists at UCSF, OHSU, and her “home” treatment hospital of Providence, in Portland.
I hope that the gem-cis really knocks your tumor back. Don’t give up on the possibility that surgery may become possible in the future. While you’re talking with the specialist at Dana Farber, ask them about whether they think you would be a good candidate for adding Abraxane to the gem-cis mix. It’s been shown in stage III trials to offer in many cases a more potent effect than the two-part therapy.
Thank you for your service-
Hannah
Hi Jtallen,
Welcome to our community, but I am sorry about your diagnosis that brought you here.
Since you are a physician, my comments are probably what you already know, but I will include them since we have many readers. Reading your story, I wondered if you had had a surgical consult with someone specialized in complex liver surgery. If not, you may wish to bring that up during your visit at Dana Farber. As you are aware, our cancer is a rare one and complicated to treat. It is important to have your medical advice come from providers who have seen a lot of cases. (I used to ask all my doctors how many cases like mine they have seen, and their answers — other than the one cholangiocarcinoma specialist and my surgeon — were surprisingly low or they declined to answer.)
There are targeted treatments available for patients with the IDH1 mutation, some through clinical trials.
Please take a look at the resources on the Cholangiocarcinoma Foundation website for newly diagnosed patients. Congratulations on your wonderful large family, and thank you for your service to our nation.
Regards, Mary
I am a new member of the group. I have Stage IIIb cholangiocarcinoma. My cancer was found incidentally on a routine ultrasound as follow up of my fatty liver disease. I had a clean ultrasound on 31 Aug 2020 but the ultrasound a year later, on 30 Aug 2021, showed a 5.5 cm (2.1 in) mass involving two segments of my liver.
On 14 Sep, I had an MRI that confirmed the mass. It was larger on MRI, measuring 7.2 cm (2.8 in) in largest dimension. It also showed an enlarged lymph node that was suspicious for metastasis.
The next day, 15 Sep, I met with the oncologist for the first time. He recommended an endoscopic ultrasound to look at and biopsy the lymph nodes, followed, on the same day, by a staging laparoscopy. He also recommended placement of a port during the laparascopy.
The following week, 20 Sep, I met with the surgical oncologist for the first time. Two days later I was in the hospital for all three surgeries. I started chemotherapy on 30. Sep, just 8 days following my staging surgery.My Caris report was positive for a mutation in IDH1.
I am being treated with Gemzar/Cisplatin. I have completed two courses (four treatments) of chemotherapy. So far, I am tolerating the treatments fairly well. I do have mild nausea the day of treatment and a few days afterwards. I also have mild constipation following treatment.
On the good side, my oncologist says that I look “pretty healthy” for someone with cholangiocarcinoma. I have no symptoms related to the cancer itself.
My treatment is through a clinic in central Maine. I am also going for a consultation at the Dana Farber Cancer Institute in Boston on 04 Nov.
On a personal note, I am married (37 years) with six children and 5 grandchildren. I am a combat veteran (Kosovo, Afghanistan and Iraq) and retired from the Army in 2017. I am also a family physician with a practice in the mid-coast region of Maine.
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