bglass

Hi Barish,

We are patients and caregivers in this community, so regretfully are not in a position to offer medical advice or interpret medical information.

Regarding your questions, here is what I have observed among folks reporting on this board.  Most, but not all, of the targeted trials right now for cholangiocarcinoma relate to the FGFR and IDH mutations.  We also have patients who participate in solid tumor trials or who are prescribed off-label treatments relating to genomic defects that are rare for cholangiocarcinoma but common for other cancers.  An example of this is the HER-2 mutation common for breast cancer but rare for cholangiocarcinoma.  And as you note, cholangiocarcinoma patients with MSI/MMR/Lynch syndrome defects (this is a very small percentage of our patients) are candidates for immunotherapy treatments such as Keytruda that have shown some effectiveness for this group.

So what should a patient do if the genomic profiling report does not show mutations in the categories above?  Looking at what our patients and caregivers have reported, I would summarize as follows:

1.  There are many trials to look at for treatments that do not require specific genomic defects.  Some trials are about chemo drugs, while others may involve liver-directed treatments such as hepatic pumps, ablation or TACE. Some involve radiation.  Some trials combine two or more categories of treatment.  There is a welter of information on clinical trials.gov.  It takes careful searching through this database to find information relevant to a specific patient on what treatments are being developed and tested.

2.  In a search, start with “cholangiocarcinoma,” “liver,” and “biliary.”  A larger category that can also be searched is “solid tumor.”  You can focus on trials that are geographically accessible.

3.  Also search any mutations that have come up in testing.

4.  If you find promising trials for which the patient seems to meet the inclusion criteria, a next step would be to bring them to your doctors’ attention.  You could also call or write to the indicated point of contact to explore if the trial is a viable option.

One challenge with a rare illness is caregivers and patients end up doing a lot of their own research.  The resources on this website should be helpful in identifying potential treatments.  Searching on the discussion board will help you locate patient experiences with the different treatments.

I hope this is helpful.

Regards, Mary

Kate,

I am so sorry to hear this sad news about your husband Ian’s passing.  Please accept my prayers and condolences.

It was a blessing that his last days were spent peacefully at home surrounded by loved ones.  Please take good care of yourself in the difficult days and weeks ahead coping with this loss.  Please also take comfort in how your steadfast support to Ian as he battled cancer made the road much easier for him.

I hope you will stay connected with our community.

Take care, regards, Mary

Hi Lili,

I am sorry to hear your father’s participation in the immunotherapy trial is not producing the results you had hoped for.  It is a difficult situation that your father’s doctors are not giving you a clear picture of options for additional treatments.  I hope that the next liver function tests are better and point to next steps.

If your father continues to feel pain and suffer from constipation, please push the doctors to find solutions.  Are there palliative care resources available to help your father maintain a good quality of life?

Although it may not be needed at this point, I do recommend that you look into what resources are available in your area for hospice care.  If your father at some future point elects to transition to hospice care, having already done the research will benefit him and your family.

Facing a decision about whether to continue to seek treatment can be wrenching for patients and their families.  Complicating this, sometimes doctors prefer not to speculate about the future course of the cancer.  Speaking as a patient, it is important to listen carefully to discern a patient’s wishes, to pick up on a patient’s signals about whether further treatment should be the plan or to focus on maximizing quality of life.  Your messages on this board are testament to your incredible efforts to help your father find the very best care.  I hope the doctors can offer third-line treatment options that can stabilize the cancer and ease its symptoms.  Your research to find additional treatment options will help as well.

It is often commented what a roller coaster this cancer can be.  I hope this rough spot passes and you get more clarity from your father’s doctors about a way forward.  Let us know how his next steps evolve.

Take care, regards, Mary

Hi Priscilla and Elodie,

Thank you for your note.  I am happy to hear that you are finding the Cholangiocarcinoma Foundation’s website resources helpful.  I hope your father is doing well with his treatment.  Please stay in touch.

Regards, Mary

Hi Priscilla,

Welcome to our community.  I am sorry to hear about your father’s diagnosis, but thankfully he has the support of you and your sister as he navigates treatment.

My impression of the evidence to date for cholangiocarcinoma is that immunotherapy treatments being tested as single drugs have had better results for patients with the indicated genomic defects (e.g., microsatellite instability, Lynch syndrome), than for patients without them.  But this is a question best asked of your oncologist.

There are other trials that pair immunotherapies such as pembrolizumab (Keytruda) with more traditional cancer treatments – these trials may not require patients to have specific genomic defects.  I have been trying to read up on the science behind these trials, as a layperson, and in some cases they are testing hypotheses that immunotherapies may boost the effectiveness of traditional treatments such as chemo and radiation.  My personal and very much layperson observation is that these combined treatment trials may have an advantage that the new immunotherapies are being provided together with traditional treatments already known to offer possible benefit.  A downside might be the more treatments involved in a trial, the greater number of possible side effects that might crop up.

Immunotherapy is a new frontier in cancer treatment, so treatments are not yet mainstream.  They are mostly in a testing process through clinical trials, and published studies on their effectiveness are generally for smaller numbers of patients.  There is much promise and hope in immunotherapy for cancer patients.

I hope this is helpful.  As you find potentially interesting clinical trials for your father to consider, please note that the announcements for trials usually give contact information.  It is worthwhile to call or email the trial staff with any questions you may have.

There are great resources for patients and caregivers on the Cholangiocarcinoma Foundation website to help your family on this journey.  I hope you will take a look if you have not already done so.

Regards, Mary

Hi BGulmas,

I don’t have much information to offer about your very interesting question, regretfully.  There are quite a few clinical trials in process around the world looking into the idea of a cancer vaccine.   They seem to be concentrated around more common cancers, however.  You can look at them by searching “cancer” and “vaccine” on clinicaltrials.gov.

The other thread I am aware of is there is a bit of speculation in the medical literature that a very late recurrence after resection points to a possibility of a new, second incidence of the same cancer, rather than a reactivation of the original cancer.  This line of thought suggests that the original causing factor for cholangiocarcinoma had never resolved and became a factor in a later new appearance of the cancer.  Problem is, however, that the causes of cholangiocarcinoma are not yet very well understood for most patients.  Many of us have no known risk factors.  This makes it difficult to know exactly what behavior to avoid or change after diagnosis.  My impression is most cancer patients wisely attempt to adopt a more healthy lifestyle after diagnosis, and certainly there is a lot of good information out there on healthier diets, stress reduction and exercise for cancer patients.

Any dietary changes, supplements or other alternatives being considered should be discussed first with the patient’s doctors to be sure they are not harmful or have potential to interfere with cancer treatments.

Regards, Mary

Hi Elena,

This is an interesting question.  I did not participate in a clinical trial after resection.  I did have chemo (gemcitabine/capecitabine) followed by radiation with capecitabine following the regimen of an earlier clinical trial that goes by the name SWOG S0809.

I looked at clinical trials.gov and did not see for the U.S. any recruiting trials offering post-resection (adjuvant) treatment for cholangiocarcinoma. I have seen references to adjuvant treatment trials currently active outside the U.S.  One disqualifying factor for recent resection patients for most trials is there needs to be measurable disease so researchers can assess the impact of the treatments they are testing, which would tend to exclude patients who have had a resection but have not recurred.

For resection patients who have recurred, trials would be an option, noting that some trials may want the patient to first try and then progress under a chemo regime before becoming eligible.

Following the positive results of the BILCAP clinical trial in the U.K., doctors may offer six months’ adjuvant treatment with capecitabine after resection.  If you internet-search “BILCAP,” you can find press releases on the study results.  In some high risk cases, chemo followed by chemo radiation similar to SWOG S0809 may be recommended following resection.  By high risk is typically meant positive resection margins, lymph node involvement, and possibly vascular invasion and/or poor differentiation, as discovered through the surgery.

I hope readers will chime in regarding trial participation after resection.

Regards, Mary

Hi Shellsbells,

I am sorry to learn that your son received this disappointing news and now must gear up for another round of treatment.  The silver lining is that the recurrence was caught early, and it sounds like a good treatment plan is in the works.

I sent you a private message in response to part of your question.

This cancer tends to be a roller coaster ride with unexpected ups and downs.  Your son is lucky to have his family firmly lending support as he copes with this latest challenge.  Sending prayers your way.

Regards, Mary