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Hi Adalles,

Welcome to our community and thank you for posting about your mom.  I am sorry she received this diagnosis and that the first round of chemo did not produced the results you and she had hoped for.  My fingers are crossed that the sequencing points to additional treatment options.

As her doctors have indicated, systemic options for treatment once moving on from gem-cis would include trying a different chemo.  Folfox is a commonly used second-line chemo — if you search Folfox on this site you can find patient stories about this treatment.  Immunotherapy treatment is a newer treatment option, and there are now targeted treatments for patients whose testing shows some of the genomic defects (mutations) seen with our cancer.  Treatments in development are accessible through participation in a clinical trial.  When the cancer is only present in the liver, there are some localized treatments that can be used (e.g., radiation) but your mom’s stent and infection issues might affect whether localized treatment would be effective.

I will put a link below to an article that explains the different types of localized treatments that can be used for some of our patients.

It sounds like the stent issues and frequent replacements are an ordeal for your mom.  I hope her doctors are able to address any discomfort she is feeling, and that they quickly find a good treatment option to get the cancer under control.  Please send us any questions you have, and keep us posted on how your mom is doing.  I know how worrying and overwhelming this diagnosis can be.  The Cholangiocarcinoma Foundation website also has a lot of info and resources for patients and their caregivers.

Take care, regards, Mary

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5411273/

Hi jnelwil,

Welcome to our community. From what I have seen on our board, we have heard from patients with a Stage IV diagnosis who were responsive to treatment, and who survived much longer than the statistics would have suggested.  I also know several long-term survivors through my involvement with the Cholangiocarcinoma Foundation.

Melinda Bachini, the Director of Advocacy at the Cholangiocarcinoma Foundation, is a Stage IV survivor who was diagnosed in 2009.  Here is her story as posted on the Foundation website.

A Clinical Trial Saved My Life

Lisa Craine is another volunteer for the Foundation who is a Stage IV survivor, diagnosed in 2010.  Here is her story.

Lisa’s Rare Cancer Story

Our colleague Patty whom you mentioned survived seven years after a Stage IV diagnosis.  Her blog (link is further down on this thread) is an inspiring read (for anyone who is interested) despite her fight with this cancer, and is helpful as she describes her experiences with quite a range of different treatments.  She reminds me that it is the journey that is important.

I hope your husband continues to feel well.  I hope our community here can be of support for you and your family.  Please stay in touch.

Regards, Mary

Hi Kiira,

I am sorry your father is feeling poorly.  This time must be very hard for your family.

I am not from the New Jersey area, so regretfully do not have any recommendations regarding care providers.  I did look into hospice options in my own area some time ago, and found the following information which possibly might be helpful.

There seemed to be a county-affiliated office that advised on hospice care, with a focus on care provided in the home.  I had the impression that hospice care in the home is the most usual situation.  There was one actual hospice care center that looked positive to me.  And a number of the care facilities for seniors indicated on their websites they could provide hospice care to their residents.  This seemed to mean the family member could be given basic care in the facility, with visiting hospice services arranged to travel there, instead of to the home.

A lot depends these days on what insurance will cover.  Please be aware that home hospice care does assume family members will provide some of the care under the guidance of the hospice medical providers.  Families should be sure they know what that will entail, to make necessary arrangements.  For example, if the family member might need to be assisted in moving around the house, the family would need to be sure to have the equipment and persons available to help with that.

I wish I had more help to offer.  Your father is blessed to have his family supporting him, and I hope you can identify professional resources in your area.

Take care, regards, Mary

Hi Frances,

Thank you for posting your latest blog chapter.  Such a beautiful tribute to your mom, and to the bond you shared.

I wanted to provide a little information as to whether your mom should have been treated with Gem-Cis and not with Gemcitabine alone.    I looked back at the medical literature and guidelines from that time.  Gem-Cis became the standard of care first-line treatment for unresectable cholangiocarcinoma  due to the positive results of a trial in Great Britain titled ABC-02.  This trial demonstrated that the Gem-Cis combination therapy was more effective than Gemcitabine alone.

There was one group, however, within the population of patients participating in ABC-02 who saw little benefit from adding Cisplatin.  This group was patients who were in poorer health, defined as having ECOG performance status 2 (PS2).  ECOG scores run from zero to five.  Patients who are extremely sick or weak are not good candidates for clinical trials, so the ABC-02 ECOG PS2 participants  weren’t in dire poor health.  Within the group of patients participating in the trial, however, the ECOG PS2 subgroup had the most impaired health status.  The trial results indicated that the ECOG PS2 patients who were treated with Gem-Cis had similar (not better) outcomes to those treated just with Gemcitabine.  Reporting on ABC-02 results often notes the ECOG PS2 group saw little benefit from adding Cisplatin.  I put a link below to an article from early 2014 that states this finding.

With this finding a recommendation to treat patients in a poor health status with Gemcitabine alone made its way into various guideline documents around that time.  Judging from some of the stories we have seen from caretakers, a related consideration has been the question of whether Cisplatin’s side effects could be well tolerated by patients whose health status was not robust.  Not being a doctor, I am not in a position to assess whether this consideration would have been relevant for your mother, but wanted to pass this along as a possible explanation for the care offered to your mother.

The medical science for our rare cancer has evolved rapidly, and patients diagnosed in 2021 may have more treatment options than was the case seven years ago.  Still, cholangiocarcinoma can be symptomless in its early stages, and is often not diagnosed until it is very advanced, blindsiding patients and their families.  Your blog describes so well how a family coped with a devastating late-stage diagnosis.  Thank you again for sharing your story.

Here is the link: https://pubmed.ncbi.nlm.nih.gov/24351397/

Regards, Mary

Hi Debbie,

I am sorry about your mom’s diagnosis.  It is understandable that she has elected to forego treatment, and there are palliative care options her doctors can offer your mom to help her stay comfortable and maintain her quality of life.

To continue to address your question, I will be getting into some sensitive territory, so please, readers, do not continue if you prefer to avoid a sensitive topic.

Sometimes a question about what to expect is really asking what it will be like for a patient experiencing a very advanced stage of cholangiocarcinoma.  This is a worry whether it is something that might happen soon, or – hopefully – much later on.  It is a topic none of us really wants to think about, and it is hard to write about, but let me say a few things.

Your mom’s doctor can be helpful in answering your questions, both about arranging care and about symptoms to look out for.  Our patients tend in many cases, when the cancer becomes very advanced, to experience symptoms related to either liver failure or sepsis (from an infection, e.g., from blockages in the bile ducts) so you can look for information if you wish on these two topics to learn about how they may manifest and what treatments and palliative measures can be used to help the patient.  Experiences with this cancer, however, vary from patient to patient.  Each patient’s journey will be their own, and will be experienced day by day with the support of family, friends and their medical team.

It is helpful to look into care options sooner rather than later, including hospice, so you and your mom have good information to look at well before it is needed.  One of our wonderful Cholangiocarcinoma Foundation volunteers – Cait – wrote an amazing blog, and posted an excellent piece about her own experience starting hospice.  This is hard to read, but is one of the most informative pieces I have seen told from the patient’s perspective.  Here is the link: https://caitandthetumortim.wordpress.com/2019/07/05/what-is-hospice/

As specific questions come up, your mom’s care team will be on call, and you can certainly post questions for our community to help with.  Our thoughts are with you and your mom.

Take care, regards, Mary

Hi Deb12ran,

Thank you for sharing your story.  It is wonderful that you have been free of this cancer now for almost 14 years.  But I am very sorry to hear your Mom and cousin have not experienced similar positive outcomes.  I appreciate that you posted your story – your experience brings hope to our newly diagnosed patients.

Were your family members also cholangiocarcinoma patients?  It would be highly unusual to find three close family members with this cancer.  There is not a lot of evidence in favor of a genetic tendency for cholangiocarcinoma, although there are some inherited genetic defects that predispose individuals to a family of cancers that might include cholangiocarcinoma.

I hope you will stay in touch.  Take care, regards, Mary

Hi Nick,

Thank you for sharing your father’s story.  Reappearance of the cancer is hard psychologically after recovering from surgery, but the better news is there are a lot more treatment options now than even a few years ago.  As others have noted, although BRCA2 is a rare mutation for cholangiocarcinoma, there are clinical trials and research seeing if PARP inhibitor treatments used for other BRCA cancers can be effective for cholangiocarcinoma.

I see on ClinicalTrials.gov there are some PARP inhibitor trials in Australia but I saw only maybe one that might be open for all solid tumors.  The medical jargon was beyond my laymen’s knowledge, plus the U.S. trial registry may not list all relevant trials in Australia, so I am regretfully not a very good judge of what might be available.  Your father’s doctor should be able to help him navigate clinical trial options or possibilities for compassionate or off-label access to PARP inhibitor treatment if the medical professionals believe it might be helpful in your father’s case.  There may be other treatment options they see as good ones in his case.

Palliative care is about alleviating pain and treatment side effects, and can be beneficial for any cancer patient receiving treatment regardless of prognosis, so please don’t be overly worried if it is mentioned.

Regarding Hannaha’s observation about traffic on this site, I also wish it was higher.  We do have a lot of readers.  It is really helpful to patients and caregivers to have a searchable bank of patient stories to look at, which is not as feasible on FB or other social media platforms.  So I do hope more of our readers can take a few moments to post their own stories.  I spent a lot of time searching stories here when I was diagnosed, and patient stories were helpful for me in understanding this rare cancer and what to expect from treatment.  So thank you again, Nick, and please stay in touch.

Regards, Mary