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Hi Judy,

Thank you for posting about Joe’s trial.  I hope the trial drug is helping him.  The required washout periods can be scary, one hopes that the trial then reverses anything that developed during that period.

Regards, Mary

Hi Kim,

It must be a relief for your family to have Rich back at home.  I hope the hospice care gets better and more responsive.  Super impressive story about your local pharmacy, you are lucky to have such support from your community.

Take care, regards, Mary

Terrence and Kathy,

Thank you for sharing the positive results you are seeing from the INCB 54828 trial.  This is indeed good news.

Take care, Regards, Mary

Hi Lili,

Stent questions are best directed to doctors, but as you indicate, sometimes regretfully it is difficult to get their attention with a patient’s concerns.  There are a ton of medical journal articles on plastic vs. metal stents, and also on covered vs. uncovered metal stents for biliary strictures, which you have probably already seen.  I will attach an example below.  The general finding in many of the studies is that metal stents are preferred if the patient’s life expectancy is longer than 3-4 months, although each study has its own perspective.  The trouble is that averages reported in studies may not capture all the details of a specific patient’s situation.

I hope with persistence you and your father can find one of his medical providers who can walk through the decision taking into account your and his concerns such as eligibility for future trials.  It is really appalling that they are dodging your questions.  Have you spoken to the doctor who will actually perform the stent replacement next month?  You might contact one of the researchers on the TIL trial to check more thoroughly about the likelihood he may be eligible and how stenting factors in.  There will be contact information on the clinicaltrials.gov entries for any trials you may be looking at.

I hope you can find the answers needed.  Please let us know how this turns out.

Regards, Mary

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4821525/

There is a comment in Table 1 in this article that “if there is no definitive management decision, plastic stenting is indicated.”  This is a bit vague but might mean if treatments are not yet fully planned out, then the shorter-term plastic stents would be considered.  It would require a doctor’s judgment whether this would be applicable for your father.

Kim,

I am so sorry that Rich’s health has taken a turn for the worse.

The question you are asking about quantity versus quality of life is a personal one for each patient.   Some people do want quantity even if this means difficult treatments.  Others choose differently.  But this seems a question for which a patient’s views must be gently sought even when the patient is worrying about not disappointing others with the choice.

You may wish to start doing some research related to hospice resources in your area, maybe not needed immediately but this is good information to have in hand for any of us.  Hospice is not about giving up – it is a medical care mode that emphasizes the patient’s comfort and well-being.  Hospice can extend life in some cases, I imagine this may be because it takes away stresses on the body that come with some treatments.

Rich is a courageous fighter – I hope his stay in the hospital brings some relief to his symptoms and more information on what is causing the confusion and balance issues.

Take care, try and get some rest.  Rich is so fortunate to have you by his side.

Regards, Mary

Hi Carrot,

I am sorry to hear of your husband’s diagnosis.  I had adjuvant gem-cap plus radiation in 2016, so for me this chemo was a good one.  The capecitabine occasional side effect (hand-foot syndrome) is widely discussed on this board — the discussions can be found using the website’s search engine.

On the question of Herceptin, it is a reminder of the challenges of a rare cancer.  To prove usefulness of a drug for a rare disease you have to find among the tiny population with the illness, an even tinier subset who have a specific mutation, and get them into a study – well, sometimes the studies don’t get done or the sample size looks too small for an insurance company to see it as “evidence.”

Options you may consider pursuing include:

Look at the Herceptin manufacturer’s website and see if you can qualify for a patient assistance program.

Look for a clinical trial.  I was looking at the clinical trials.gov website and there are a few for cholangiocarcinoma patients with HER2, or solid tumors with HER2.  There is a big group of trials called NCI Match that are testing response by patients with genomic defects for drugs used for other cancers with that same defect.  There are several arms for HER2 patients.  An advantage of NCI Match is there are participating sites throughout the U.S.  Through your oncologist or using the contact info for on clinical trials.gov, you can find out about the trials and if there is a space. If you choose a trial, the treatment cocktail, however, may be different than what your husband’s doctor is recommending.

A third option is to see if your husband’s doctor is willing to do battle with your insurer.  If he or she is recommending Herceptin, there is likely at least some medical evidence he or she can point to.

As to possible Herceptin side effects, this is a judgment call you and your husband may have to make with limited information.  You may wish to seek a second opinion from a provider familiar with similar cases.  There is manufacturer and medical journal info on the web that can tell you how big or small the risk may be.   Cancer treatments can be tough and sometimes there are no guarantees – we move forward with faith, hope and crossed fingers and toes.

Please stay in touch and let us know how you and your husband are doing.

Take care, regards, Mary

Hi Emaline,

Welcome to our community and thank you for letting us know your experiences with two trials.  You got a good long run with Stivarga – I hope your next trial gives you the same or better.

While the trials beat back or stabilize the cancer for many participants, at the same time they help advance the science to the benefit of all of us.   Please keep us posted as you start a new round of treatment.

I hope you have had a chance to look at the resources posted on the Cholangiocarcinoma Foundation website for patients and caregivers.  There is information on trials available on this website.

Take care, regards, Mary