Husband of 35-years-old ICC patient
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Hello JH- I have seen mention of “liquid biopsy” where genetic analysis of the tumor can be done from a blood sample. I’m not sure if this is possible for your wife but I thought I would mention it, perhaps you could search the discussion board to see what other people have said. Wishing all the best for you and your wife, Tilly
Dear JH,
Thank you for the update – I am sorry to hear that the original biopsy submission for genomic testing did not produce the information you need.
Not being a medical specialist, regretfully I do not have a good answer to your question regarding the biopsy. If you look at the Foundation One website, there are detailed instructions on how to prepare the biopsy specimen (“Specimen Instructions” and “Specimen Guidelines”). I assume your treatment center would be following these.
How is your wife finding the chemo treatment? I hope this is going well for her. Please keep us posted.
Regards, Mary
Hi all,
My wife is going through with her second cycle of GemCis + Meditreme.
In the meantime, our onc sent her biopsy sample to FoundationOne for genetic test. The result came back inconclusive, as they require at least 20% of the biopsy sample to be tumor cells. Apparently, our sample came short of this requirement. I don’t know how this happens… anyone with insights into biopsy or FoundationOne requirements?
Fortunately, we have just taken another biopsy last week, and our onc wants to resend this new sample over. She is a bit worried that the new sample, having been taken after the first round of chemo, might have lesser portion of tumor cells.
Quite frustrating week.
Hi JH,
I hope your wife is feeling better. I am not familiar with the clinical trial you mentioned but it is positive there is a good trial available for her.
Regarding needle biopsy, you mention you are concerned about possible seeding of cancer cells into the needle track. I remember asking about this when I went through a biopsy. My recollection (I am a patient, not a medical practitioner) is that the risk is very low but not zero, and that doctors take steps to minimize the risk through the types of needles used and the number of needle passes. You might ask your doctor about the risk in your wife’s case since this is concerning you.
The usefulness of biopsy is to confirm the diagnosis and to provide sample tissue that can be used for genomic testing. Biopsy is discouraged if the patient will be sent for surgery or transplant – samples of tissue for testing if needed can be taken during these procedures. But for patients whose first treatment is not surgical, the biopsy provides information to determine which treatment is likely to be most effective. This is especially the case now with precision medicine, where the genomic information can point to more targeted treatments.
During cancer treatment, patients are confronted with trade-offs between the risks associated with treatment as opposed to the risks of foregoing treatment. These questions can be tough ones. Patients should push their doctors to provide sufficient information so that these choices can be made in an informed way.
Please keep in touch. Your wife from your description is a person of great courage, and with a great family supporting her.
Regards, Mary
Hi JH,
Is this is the trial that your wife is on?
https://clinicaltrials.gov/ct2/show/NCT03046862
And did the doctors say why they want your wife to undergo another needle biopsy before starting the trial? There are quite a few postings here on the site regarding needle biopsy and if you want you can search for them through the search forum function at the top of the page.
My best to you and your wife,
Gavin
Thank you Gavin and Mary for the words of encouragement.
We are receiving treatment from one of the largest cancer centers in Korea, but I plan to seek out additional opinions from US centers as well.
The clinical trial she will receive next week, MEDITREME consisting of two different immune checkpoint inhibitor drugs, is a strong incentive for us to stay with this team and see the progress. I wonder if anyone here has any insights into this trial.
In the course of diagnosis, two needle biopsies were done over the course of 2 weeks. Once on mid-Sept. and then another in end-Sept. The second one was done due to inadequate amount of sample taken during the first.
Now the doctor wants to do another one, prior to starting the clinical trial. My wife is terrified of yet another poking around, as it has been generally less then pleasant experience. I’m more concerned about the risk of metasis. Can anyone advise?
JH
Hi JH,
Welcome to the board – but sorry to learn about your wife’s diagnosis that brought you here.
As you have discovered, CCA is a rare cancer and this poses challenges to finding medical providers who have experience with CCA patients. In my own case, I always ask my care providers how many patients like me they have treated and I ask if they are consulting with colleagues with more experience.
Another aspect of this cancer is it requires a multidisciplinary team to diagnose and treat. Major hospitals convene tumor boards with participation of different specialties to recommend treatment, including oncologists, surgeons and radiology specialists. Some patients also arrange their own consults with a surgeon and/or an interventional radiologist. If the CCA is confined to the liver, there may be liver-directed treatments which can be used for some patients in addition to chemotherapy.
As Gavin noted, looking into a second opinion from a major cancer center with CCA experience is worth thinking about. In the U.S., some of the centers will review a patient’s records remotely. Their websites will give instructions on this or a contact point. There may be a cancer center closer by to you and your family with CCA experience. Again, if the cancer is only present in the liver, it is important to have good opinions about whether there is a possibility of surgery.
In the U.S., it is starting to be more common for CCA patients to have genomic testing to see if there are any genomic defects for which there are targeted treatments available. Is this an option available in Korea?
Please do look through this discussion board, and keep us posted on how your wife is doing. As you can see from the patient stories, there are many more treatment options available today than in the past, and a lot of hope for patients. In my own experience, when dealing with a rare cancer diagnosis, it is important to be as well-informed as possible because you will encounter many medical care providers in your path to treatment who have not seen many or even any other CCA patients.
Best wishes that your wife’s treatment goes well with good quality of life. She is fortunate to have the “fleet” of caring family and friends to support her.
Regards, Mary
Hi JH,
Welcome to the site. Sorry that you had to find us all here and I am very sorry indeed to hear of your wife’s diagnosis. But I am glad that you have joined in with us all as you will get a load of support and help from everyone here. We don’t have all the answers but will help as best as we can.
From what you say, it does sound like your wife is tolerating the side effects of the gem/cis very well and that is good to hear. I also hope of course that the chemo works as planned and will be keeping my fingers crossed for the best possible outcome to this. It sounds too like you both have a great support network network at home and that is also very good to hear as you will both need that as you go through all of this. And of course, you now have all of us as well here so please keep coming back and let us know how everything goes.
I hear what you say re another opinion from treatment centres in the USA and that is of course an option for you. I have some links from here on the site that will be of use to you should you wish to go down that road now or at some point in the future.
This link comes from the “newly diagnosed” section on our homepage – https://www.cancer.gov/research/nci-role/cancer-centers/find
I guess you will have come across the hospitals and physicians section of the site and if not it can be found here https://cholangiocarcinoma.org/db/forum/hospitals-physicians/
In it, it has the thread that was created over the years from the members here on the site where either they or their loved ones have been treated. It can be found here https://cholangiocarcinoma.org/db/topic/treatment-centers-physicians/
Yes a second opinion is always an option and one that should be looked into, or even a third one if need be. Hopefully some of the other US based members will be along soon to chime in with their thoughts on facilities in the USA. I can not help with that I am afraid as I am from the UK.
Good luck with everything. Please stay in touch and let us know how everything goes. We are all here for you.
My best wishes to you and your wife,
Gavin
Hello everyone.
Although this is my first time posting, I’ve been reading multiple entries on this site for information, solace, and hope.
My 35 year old wife was diagnosed month ago with stage 4 intrahepatic cholangiocarcinoma. She was excited to begin her second in law school when she went to see a doctor for a cramp in her right abdomen. She initially thought it could be an appendicitis, and when her doctor ordered ultrasound and referred her to a larger hospital, the most horrific month of our lives began to unfold.
After a series of CT, PET, MRI scans and a needle biopsy, they confirmed that it was ICC metasized to liver, inoperable and not suited for radiation treatment. Her PET shows about 2/3 of her liver is taken over by tumor cells, the largest one in the right lobe.
Our oncologist suggested that she immediately begin chemo theraphy consisting of standard gemcitabine and cisplatin, and also a clinical trial for chemo-naive patients aiming to block immune checkpoint consisting of tremelimumab and durvalumab.
She began her regiment of gem/cis two weeks ago and is thus far enduring it remarkably well. She gets fever symptoms on the third and the fourth day from the treatment, high temperature and general muscle aches. She tries to eat well and much as possible to maintain her weight. She exercises regularly and keeps up with her law school readings even though she withdrew from this semester and probably more.
It pains to me see this otherwise beautiful, healthy, young person beginning a struggle against enormous odds. There is a fleet of family and friends that is devoted to support her through this, but I feel powerless that I can’t do anything else for her to win over this dreadful illness.
We live in Korea and are receiving treatment here. But thus far, no doctor is suggesting a solution other than the chemo regiment that she started. Should we seek an overseas opinion from major cancer centers in the US?
Any feedback or advise will be most appreciated.
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