bglass

Hi Bgulmas,

I am sorry to hear about your mother’s diagnosis.  It sounds like her doctors are watching her closely.

I have a question – when your mother’s CA 19-9 started rising, did she have scans that showed the cancer had reappeared?  Sometimes it can take a few months before a recurrence is visible on a scan.

There are a lot of patient and caretaker resources available on the Cholangiocarcinoma Foundation website.  There is also a good community of patients and caregivers on this discussion board, so please keep us updated and send any questions our way.

Best wishes that your mother is able to well tolerate the chemotherapy and that it does its job stabilizing the cancer.

Regards, Mary

Hi Pooh,

This is great, great news.

You asked about a second opinion.  Whether to seek one is a personal decision.  Generally patients who are borderline operable may seek multiple surgical opinions to explore whether a more experienced or more specialized surgeon might see the liver resection as feasible.  In your case you have found a surgeon you trust who sees a definite surgical path to removing your cancer.

Resection is a major surgery, so a lot will be done to be sure it is safe.  You may be asked to have some tests to be sure you are in sufficiently good health for the surgery, e.g., a stress test of your heart.  The surgeon will use your scans and modeling of your liver to ensure your liver function is not impaired by the surgery.  Frequently, as a first step during the surgery,  surgeons take a laparoscopic look at your liver to doublecheck the surgery is feasible and to finalize plans for the surgical procedure.  The liver is the one organ of the body that regenerates, so the amount removed in the operation does grow back.  The regeneration process is surprisingly quick, within a few months.

While losing 60% of your liver sounds huge (my resection also took 60%), in fact, up to 70+ percent can be safely removed.  The amount of one’s liver that can be safely removed depends on a number of factors that the surgeon will evaluate in making a surgical plan.

In my own case, in the days before my surgery, my parked car was damaged in a hit and run and my furnace died and had to be replaced.  I remember being on the phone with my insurer while on the gurney in the pre-surgical suite.  Looking back, while not something I’d wish for, rushing to get these problems fixed kept me from thinking too much about the surgery.  I also embarked on cleaning my entire house which was another good distraction.  So my advice to anyone facing a big surgery would be to keep yourself busy and distracted in the weeks prior.

Please keep us posted.

Regards, Mary

Hi Laura,

Welcome to our community.  Loving your display name and picture.

Your current treatment, gem-cis, is the workhorse regimen for our cancer.  It is great to hear that it has produced some good results for you so far.

There are other chemo combinations that your doctors may recommend should the gem-cis someday run out of steam.  There are also new treatments in development that are available through clinical trials.  If you read through the patient stories on this website, you will get a feel for different regimens patients have pursued.

There are a lot of resources on the Cholangiocarcinoma Foundation website that you may also find helpful.

Since this cancer is a rare one, it is recommended to be treated or have guidance from a major cancer hospital with cholangiocarcinoma experience.

Please send any questions or concerns our way, and stay in touch.

Regards, Mary

Hi Pam,

It is great to hear from you and that you are still cancer-free after seven years.

I went back and looked at your original chain from 2011.  Your story is an amazing one.  Cholangiocarcinoma is often symptomless in its early stages and may be discovered accidentally when looking into an unrelated health issue.  In my own case, it was discovered when I went to the doctor for tendonitis.

(By the way, as a note to readers, if you wish to follow a specific board member’s posts, you can do so by clicking on the participant’s name.  This takes you to a page with links on the left-hand side to a member’s topics started and posts.)

Please stay in touch – stories like yours are an inspiration to the community.

Regards, Mary

Thank you, Gavin, for posting this.

Ivosidenib is the newer name for the drug formerly known as AG-120.  Some of our folks participated in trials for this drug, which targets the IDH1 mutation.  If you use the discussion board search engine for “AG-120” you can read their posts.

Hi Idaho,

I am so sorry to learn that your husband was diagnosed with cholangiocarcinoma, but happy you have found our community.  If you have not already done so, please take a look at the many resources available for newly diagnosed patients on the Cholangiocarcinoma Foundation website.

From what you describe, it is important to find a major cancer center with experience with this rare cancer, to confirm your husband’s diagnosis and develop a treatment plan.  Once there is a treatment plan this can often be followed closer to home with the cancer center experts working collaboratively with more local medical providers.  For example, in my own case (I am a patient), my treatments have been recommended by Johns Hopkins in Baltimore, but I have received most of my care close to home.  At major medical centers, patient cases are reviewed by a “tumor board” which is a committee of medical experts of different specialties, including usually surgeon(s), oncologist(s), interventional radiologist(s), pathologist(s) and/or hepatologist(s).  Cholangiocarcinoma is complex and in some cases difficult to treat, so multidisciplinary review is important.

You mentioned that, thankfully, no metastases were found.  In such cases, it is important to get surgical advice from surgeons familiar with this cancer.  Surgical removal of the cancer is a potentially curative treatment, but time is of the essence in finding out if your husband’s case is operable.

Here is information on major cancer hospitals:

https://www.cancer.gov/research/nci-role/cancer-centers/find

And here is a section of the Foundation’s website in support of our nation’s heroic Vietnam vets, a group who seems to be more susceptible to this cancer than the general population – reflecting the higher risk in Southeast Asia.

https://cholangiocarcinoma.org/vietnam-veterans/

Please stay in touch, and send any questions our way.  This is a very rare cancer, and you will come to find that some of the medical providers you may encounter along the way have little experience.  I always ask any doctor I see how many other cholangiocarcinoma patients they have treated.  Please also know that this is a hopeful time for our community, as multiple new treatments are on the horizon or in development.

Regards, Mary

Hi Billy,

I will let Gavin reply to your specific question.

I did want to note that if you internet-search “AJCC intrahepatic cholangiocarcinoma 8th” you will find articles discussing the recent changes which summarize or reproduce the revised classification.

Regards, Mary

Kim,

I am so, so sorry to hear this sad news.  Please accept my condolences and prayers for your loss.

You and Rich have contributed so much to the battle against this rare cancer.  His committed participation in trials even when the going was tough, your dedication to documenting his experience for our community, your and Nathan’s unwavering support and loving care for Rich, are testament to the courage and heroism that major illnesses can bring out in all of us.

Please consider staying in touch with our community.  Our thoughts will be with you in the difficult days ahead.

Regards, Mary