bglass

Rev. Wayne,

I agree that chemo is an opaque topic to wrap one’s head around.

Cisplatin is one of the chemos in the “platin” family – others are carboplatin and oxaliplatin.

Capecitabine is from a different family – it is the pill form of 5FU.

Gemcitabine is a third chemo.  As another board member, Darragh, recently mentioned, a new chemo derived from gemcitabine – Acelarin – is being tested so in the future gem may have a “family” as well.

These chemos are all used for cholangiocarcinoma and have been tested in clinical trials both singly and in combinations.  Gem-cis became considered a standard of care as a result of a large clinical trial study (ABC-02) that showed it to be more effective for CCA than gem alone.

Gem-cap  is used in an adjuvant (post-surgery) protocol also including radiation that comes from a study called SWOG S0809 if anyone wants to Google it.  In the study, the authors note that their design predates the British study on gem-cis.  Capecitabine is used with radiation because it appears to sensitize cancer cells for better impact by the radiation.  Gem has been used in this way as well, but it is more complicated since it requires infusion which is difficult to manage given radiation is every day.

Gem-cap has been looked at in a bunch of small studies and appears to produce similar results to gem-cis.  What is missing is a large, randomized study.

Regards, Mary

Hi Semih,

Thank you for your note.

I have not had experience with FOLFIRINOX but I know some of our board members have had good results from this treatment.  If you use the search engine at the right on the discussion board page, you can find the patient stories plus some research articles Gavin has posted on this treatment.

The clinicaltrials.gov site shows a Keytruda trial in the Netherlands with a contact name (Caroline Doornebos tel:31 23 515 3362) who appears to be Merck’s medical director for Netherlands and who is listed as the point of contact for multiple clinical trials.  Is this the person you have tried to reach?

Best wishes as you evaluate your options for your next round of treatment.  It is a hopeful time as new treatments for CCA are coming on line.  A few years ago, some of the options you are looking at were not yet on the horizon.

Regards, Mary

Hi Malepi,

Your news that your father has had a good response to the GEMOX was wonderful to hear.  Fingers crossed that the delay in his latest treatment is just a small bump in the road.

What we see with this cancer is that treatments can sometimes lose effectiveness over time, so it is always smart to be thinking ahead to the next treatment, as you are doing.

Your questions are best addressed to medical professionals, but here are some thoughts.  Regarding when it is time to repeat a biopsy/genomic testing out of concern the cancer may have further mutated, I have seen this topic discussed but without any specific guidance.  Some of our patients have had this test repeated in conjunction with participation in clinical trials.  In addition to the views of your father’s doctors, you might consider directing your question back to Foundation One.  The company website has email and phone contact information for clients – it may be that their experts have some guidance on this point.

Regarding Y90, my impression is that the appropriateness of this treatment would be determined by the details of an individual patient’s status.  I did look at the eligibility criteria for a few of the clinical trials involving Y90, and they did not seem to explicitly exclude patients who had progressed under a chemotherapy.  This is also a question best directed to a medical professional.  A bunch of our folks have been treated with Y90 – if you search this term on our search engine, you will find stories about this treatment from other patients and their caregivers.

I hope your father’s next round of blood tests brings good news.

Take care, regards, Mary

Hi ghiguy,

It is good to hear from you, but certainly not good that you are experiencing such pain.

I looked at your earlier post, and was reminded that you had a stent, whipple surgery, then chemo and radiation.  That is quite a lot of treatment, and I hope it has been successful in keeping the CCA at bay.

What is your doctor telling you about the source of the pain?  Have you been offered any other options to treat the pain other than over-the-counter pain killers?

Some of our folks have developed abdominal adhesions after surgery, which is a form of internal scarring that can cause pain.  In my own case, since resection surgery (2015), I still have daily twinges and stabs of discomfort around the incisions and around the focal points of the radiation treatment – but nothing on the order of the pain you are describing.

Are you still in Prince Edward Island?  My family took me there for a holiday when I was very young and mad for the Anne of Green Gables books – I still remember the ferry and how lovely the island is.

Regards, Mary

Hi Katrina,

Welcome to the new format of the discussion board.  Since it is new, we are still getting used to it – if you have suggestions or questions, there is now a place on the right-hand side that tells you how to contact the administrator (Rick).  Any suggestions are most appreciated.

To add a posting to an existing chain, look for a button at the top right-hand side that says “reply.”  Or scroll down to the very bottom of the thread and you will see the box for the reply.  Your new entry will then appear at the top of the chain and will also be flagged on the beta page that lists the newest topics and postings.

I looked at your earlier messages and some other users did use that same thread to discuss and update their own stories.  The moderators very occasionally move a posting if it fits better under a different heading – e.g., a posting about chemo appears under the radiation topic.  I will look into whether we can separate out your reports on your current treatment into their own topic so that info is easier for others to find and follow.

Looking forward to hearing your update!  Regards, Mary

Hi Dnbeppler,

Welcome to the discussion board.  I noticed no one jumped in to provide info on TACE – here are some articles I found.

https://www.cancer.org/cancer/liver-cancer/treating/embolization-therapy.html

https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=663330

Also, the websites for the major cancer hospitals generally have information for patients explaining the different available treatments.

Regards, Mary

Hi Cameron,

Welcome to the discussion board.  Your father is so blessed to have such strong family support as he pursues treatment.

Many patients pursue second opinions.  There are several ways I know of to go about this.  First, you can raise the idea with your current doctor, and enlist his or her help.  A second opinion is a common practice, particularly with a complex diagnosis, so your doctor should be supportive.  Or you could ask around to find another cholangiocarcinoma expert, and approach that doctor’s office directly.  Or, on the websites for many of the major cancer hospital centers, you can find instructions for requesting a remote second opinion, where you would send all the medical records and scans, and the hospital will organize a review for you.  Be sure it is a hospital with expertise with this rare cancer, not all hospitals have this.

Please check your insurance coverage beforehand.  For example, my understanding is that some insurers may not cover remote second opinions.  (I see you are in Canada where this aspect may work differently.)

Some reasons patients on this board have pursued second opinions include:  to confirm the initial diagnosis, to be certain there are no options for surgery or transplant when the cancer is locally confined, and to investigate if there are other treatment options.

For many of us, the initial diagnosis is made via a hospital tumor board, which includes a group of doctors in different specialties, so there have already been multiple experts involved.  Cholangiocarcinoma, however, can be hard to diagnose.  My case, which was fairly straightforward, entailed having the scans read by two sets of radiologists, and then multiple tries with various stains to figure out a biopsy sample.

As you read through the patient stories on this board, you will see the common thread of families experiencing an unexpected diagnosis of a cancer we have never heard of.  You will also see there is much hope, with the numbers of treatments expanding every year.

Your family picture is lovely.

Please keep us posted on your father’s progress, and be sure to look through the many resources on the Foundation’s website.

Regards, Mary