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Hi Cpioneercountry,

Welcome to our community!  Opioid pain relievers are important tools for management of severe pain, but as you note, they can have side effects that can be impairing or unpleasant.

Most other pain relief options are good for mild to moderate pain, but may be less useful in a case of severe pain.  Other options you can discuss with your doctor include:

Over the counter pain relievers (aspirin, NSAIDs or acetaminophen), which may also be prescribed by your doctor in higher doses needing a prescription;

Pain patches or ointments, if the pain is localized, either over-the-counter or prescribed;

Certain antidepressants can be prescribed for pain.

If the pain is very specific, e.g., nerve-related or joint-related pain, there may be a specific remedy your doctor can offer.  I am thinking of treatments like steroid injections for joint issues.

Heat or ice packs.

Some of our patients have reported finding pain relief with acupuncture or medical marijuana products.

It is really important that you first discuss any pain reliever you are thinking of trying with your doctor to be sure it does not interfere with your treatment or have dangerous interactions with other medications you take.  This includes any over the counter treatments from the store.

Also, please note that for our patients, pain control works better when it is started early.  Pain can be harder to bring under control if pain management is not started until the pain is severe.  If now or in the future you do need opioids to control pain, you can ask your doctor to try different options with you, for the drug itself or the dosing strategy, to find the best outcome for you.  This can be a trial and error process since each patient responds differently.

I hope that you and your doctor can find a better pain management strategy for you since the current one is not giving you good results.  Please stay in touch with us and send any questions our way.

Here is a brochure from the National Cancer Institute with more information on pain management for cancer patients: https://www.cancer.gov/publications/patient-education/paincontrol.pdf

Take care, regards, Mary

Hi Donna,

It is nice to hear from you.  I am sorry your father is experiencing such an ordeal with so much testing without clear answers.  He has really been put through the wringer trying to get a diagnosis so his jaundice and other health issues can be treated.

Cholangiocarcinoma can be notoriously hard to diagnose.  I am not a doctor so cannot give medical advice, but my layman’s observation is that untreated cholangiocarcinoma tends to spread and advance.  If your dad’s problems have been going on for more than three years without cancer being clearly evident, that would not be very characteristic of this cancer, although a few people do have slow-moving or unusual presentations.

Jaundice is a serious symptom and your father is not feeling well, so it seems important to keep looking for answers.  One idea I would suggest is to gather his medical records and scans, and seek a virtual second opinion from a major medical center gastrointestinal practice.  Usually our patients consult with cancer specialists, but from you describe, there is no clarity yet about whether this is cancer so maybe a liver specialist would be a good medical specialty to look into.  My own diagnosis started with a hepatologist (liver doctor) who also looked into non cancer causes of the mass found in my own CT scan.

Another suggestion if you are still worrying this might be cancer is to look for a doctor specialized in cholangiocarcinoma since this had originally looked like a possibility, and these doctors will know a lot about bile duct concerns.  The Cholangiocarcinoma Foundation website has a medical provider map of expert doctors.  I will put a link for you at the bottom of this message.  There are several internal medicine providers shown who are in Kentucky.  But even if a cholangiocarcinoma specialist ends up ruling out cancer, the second opinion may help advance an alternative diagnosis that can lead to treatment and helping your father feel better.

You should be able to get suggestions on a second opinion from your father’s current doctors.

Here is the link to the specialist map:

Specialist Map

I hope you and your father can find some answers.  He is fortunate to have you helping him to figure out this difficult situation.

Take care, regards, Mary

Hi Mkearins,

I was hoping someone in our community would write in regarding experience with a Denver shunt.  From what I could discern looking around myself, Denver shunts are not a new method and are also used for patients with other cancers.  I could not find any postings on our board on this topic, however.  There seem to be a lot of medical journals out there discussing this approach to managing ascites, but I did not see much describing experiences from a patient perspective.

I hope your husband’s medical providers are successful in bringing the ascites under control.

Take care, regards, Mary

Hi Hesw,

No need to apologize for chemo brain – we’ve all been there.  I was suggesting you search INCB054828 on this discussion board.  There is a search engine on the main discussion board tab.

Regards, Mary

Hi Billy,

Please count on my prayers for you and Katherine.  I am sorry she has had such a rough time in recent weeks, rough for you as well.   Thank you for taking some time during these difficult days to add this chapter to her story — one that our community has followed with great affection for both Katherine and yourself over the past five years.

Even if we don’t hear from you going forward, please know that the detailed information you and Katherine have posted about her treatments will continue to help patients and caregivers who come to this board.  I really appreciate all both of you have contributed.

Please take care, regards, Mary

Hi Keivan,

Welcome to our community.  I am really sorry to hear about your mom.  I hope you have had a chance to look at the resources for  patients and caregivers on the Cholangiocarcinoma Foundation website.

Based on what has been posted on this board for other patients, brain metastasis is sometimes treated with radiation, depending on the location of the mets.  Is this something your mother’s doctor has mentioned as an option?

New treatments being tested are most often available to patients through participation in clinical trials.  The website clinicaltrials.gov allows a patient or caregiver to see what trials are available for their cancer.  One piece of information to look at for any available trials is the eligibility and exclusion criteria, to see if your mom would be eligible.  Some trials, for example, might exclude a patient with brain mets.  This website has listings for trials in the U.S. and some outside the U.S.  If you are in another country, your Ministry of Health may have its own clinical trials registry on line if the pharmaceutical companies are performing clinical trials in your country.  If you participate in a trial, typically the treatment is provided free of charge, although there may be other costs to consider such as transportation.

Did your mom have genomic testing to see if her cancer has any mutations for which there are available treatments?

Another suggestion for times when available treatments are too expensive is to look at the pharmaceutical company’s website to see if they offer any financial assistance programs for patients.

Please keep in touch, and send us your questions.  We are not medical providers, but our community has been on the same journey as you and your mom, and we are here to support you.

Take care, regards, Mary

Hi Snecl,

Gavin does a great job in keeping us up to date on published research.  I was curious about your reaction to this particular study.  There has been a lot of debate about the effectiveness of adjuvant treatment.  There have not been a lot of major studies so far, and results from smaller scale studies that look promising, may not have as much statistical strength.  The UK research mentioned in the abstract is for a study called BILCAP.  This study had positive results in terms of longer survival, and has influenced current day treatment decisions more so than the other studies.  I will post a citation below that discusses BILCAP and how it has become standard of care.

A decision on whether to pursue adjuvant treatment is one that patients discuss thoroughly with their doctors, as each patient’s situation is unique and patients have different views on treatment.  Because there remains some debate in the medical community about adjuvant treatment, our doctors sometimes leave it to patients to decide.  When you are recovering from surgery, it can be daunting to think about adjuvant treatment.  My observation from the many experiences we see on this board, however, is some patients come to regret not having the additional treatment.  In my own case, I wasn’t asked if I wanted adjuvant treatment.  Rather I was told I needed it because I had multiple high risk features.  I had both chemo and radiation, and thankfully am still NED (no evidence of disease) now six years after surgery.

To be effective, adjuvant treatment needs to start around the time the patient has recovered sufficiently from surgery.  The theory behind it is that some cancer cells may have been left behind and the adjuvant treatment mops them up.  Also, having surgery is a shock to your system which might activate any remaining cancer cells and/or reduce your body’s ability to fight against them in the months right after surgery.  If this is a decision you are considering, please check with your doctor what the optimal timing would be to start adjuvant treatment.

Here is some info regarding BILCAP (adjuvant capecitabine). https://dailynews.ascopubs.org/do/10.5555/ADN.19.190212/full/

Regards, Mary

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