bglass

Hi Gavin,

This is a really interesting research study.  How fast adjuvant treatment can start after surgery often reflects how quickly the patient recovers from surgery.  We have heard from several patients posting here over the years about delays due to their own hesitancies about chemotherapy.  Now that many patients are offered adjuvant capecitabine in pill form which is easier than coming in for chemo infusions, options for adjuvant chemo are easier.

The reasons given in the literature for not delaying adjuvant treatment mainly relate to a need to quickly “mop up” any stray cancer cells that were not removed by surgery.  Resection or Whipple surgeries are big ones, and your immune system may not be fully up to speed in the weeks after surgery to battle these stray cells.  The trauma to your body involved in having surgery (this is GOOD trauma, it is getting the tumor out) could also serve to activate any remaining cancer cells.  Hence surgery followed by adjuvant treatment, if recommended by your doctor, is viewed as a “one-two punch” in treating cholangiocarcinoma.

Since I mentioned capecitabine, a reminder about the rare enzyme deficiency called DPD deficiency is important.  DPD deficiency, if you have it, means that capecitabine may be more toxic for you and less safely tolerated.  If your oncologist is offering capecitabine (xeloda), please tell him or her if you know you have a DPD deficiency.  You may want to ask whether you are a candidate for DPD deficiency testing well before starting adjuvant treatment because the test results may take a week or more.  If you start taking capecitabine and experience side effects that are more severe than what your oncologist said to expect, this must be immediately reported to your medical team.

Take care, regards, Mary

Hi Pcw183,

Welcome to our community.  I wish your husband had not received the diagnosis that brought you to us.

Experience with our cancer varies a lot from patient to patient because of differences in how and where it turns up in your body, and differences in patient starting points, such as age and general health. Sometimes the cancer is aggressive, while in other patients it can move slowly.  There is no way to generalize because a very specific feature of a patient’s case may result in different treatment options and outcomes compared to other, seemingly similar patients.   Doctors are hesitant to offer specific timeframes about life expectancy for these reasons.

I am hoping your husband is being seen by doctors with experience with our rare cancer, and who are giving guidance about what to expect. If treatment is not possible due to liver damage from cirrhosis, their efforts will be oriented to preserving your husband’s liver function and avoiding infections.  Signs of liver failure and/or of sepsis resulting from blockages in the gastrointestinal tract are adverse developments to look out for.  Maintaining general good health, e.g., with a nutritious diet, having some exercise and staying engaged with daily activities, as possible, is important for our patients.

Please stay in touch with our community.  I hope you have had the opportunity to look at the resources for patients and caregivers available on the Cholangiocarcinoma Foundation website.

Take care, regards, Mary

Hi Laura,

I am so sorry for your loss.  It is painful to lose a beloved parent, and that pain stays with us mixed in with all the happy memories.  Please count on my prayers for you and your family.

Take care, regards, Mary

Hi Alcyon,

It is a pleasure to meet you, although we have heard a lot about you through Hannaha’s postings.  Hannaha is an amazing and wonderful voice on this board.

I looked around a bit but did not find much information for you.  Here is the final article from the trial for Ivosidenib (AG-120). https://pubmed.ncbi.nlm.nih.gov/34554208/  You can look at the tables and graphs on this report to see some characteristics of survivors although I don’t think it is specific to the “long tail” as you describe it. The information is not written for laypersons, but it looks to me as if individuals in better initial health did better than those less so.  It also looks as if the researchers looked to see if the individuals in the trial had other mutations, but that there was no strong finding about the impact of the presence of other mutations.  At any rate, that it what I think I saw in there.

Also, we had a few folks who participated in the AG-120 trials who posted on the board at the time.  I looked through their posts but did not find anyone reporting a long survival.  This is not to say none were in this group, it is just that no one with that profile posted about it.

I wish I could be of more help with your question.  It is really inspiring how well you are doing with your treatment – my fingers are tightly crossed that your good results are here to stay.

Regards, Mary

Hi Ski4fun,

Welcome to our community.  It is wonderful news that your husband’s cancer can be addressed with surgery.  A Whipple operation is a big surgery, but it sounds like he has a well-experienced surgeon.

There are a lot of postings on this board about experiences with Whipples, which are accessible using the discussion board search engine.  There are also a lot of good resources on the Cholangiocarcinoma Foundation website for newly diagnosed patients.  If the surgery can be accomplished laparoscopically, hopefully that will lead to an easier recovery.

From my own experience with a liver resection, my suggestions would be: to get walking as soon as this is feasible while in the hospital – the hospital staff will help with this; to have a big roll of plastic wrap ready when he gets home – to wrap around the torso before showering to keep the incisions dry; and to accept that the surgery rearranges one’s insides sufficiently that it will take some time to get used to a new normal – like occasional twinges around incisions, or figuring out what foods to avoid for awhile.

I hope everything goes well with your husband’s surgery and best wishes that his recovery is uneventful.

Regards, Mary

Hi Gap,

Welcome to our community.  It is very good news that your husband responded so well to his chemotherapy.  I hope his good results persist and he continues to feel better.

If the biomarker testing shows his cancer involves mutations for which there are targeted treatments, they may be an option for the future if needed.  The newer treatments are much milder than chemo in terms of side effects for most patients.

If  your husband continues to experience pain or discomfort, he should push his doctors for ideas on how to address this.  If your husband is being treated by a hospital, there should be a palliative care practice there that helps patients deal with discomfort caused by cancer or its treatment.

I am sure your husband feels blessed to have your loving care during this tough time.  Please stay in touch and let us know how he is doing.

Take care, regards, Mary

Hi Guda,

I am so sorry to hear about your dear father ‘s passing, and the ordeal he and your family went through seeking a diagnosis when he was so severely ill in the last several months.  From what you describe, his last two months were a race for his doctors to try a diagnose what was going on while his health was rapidly deteriorating.  This experience must have been heart-breaking for you and your family.

Because cholangiocarcinoma is a very rare cancer, it may not be the first illness doctors look for when a patient presents with general gastrointestinal symptoms.  At the same time, our cancer can be notoriously hard to diagnose in some patients, who can go through multiple rounds of tests without conclusive results.  To give you an example from my own case, my general bloodwork including bilirubin and liver enzymes was all normal around the time I was diagnosed even though I had a tumor occupying more than half of my liver.

Cholangiocarcinoma patients can have a higher risk for developing blood clots. Sometimes patients will report symptoms that lead their doctors to look for a blood clot, in other cases a symptomless clot will be seen on a scan.  Sometimes symptomless blood clots are not detected at all, until they cause a serious complication.

I hope you and your family can find peace and take comfort in memories of your father’s life and your moments together.  Please stay in touch with our community.

Take care, regards, Mary