New substack blog on my late mom who suffered from cholangicarcinoma

Hi Frances,

Thank you for posting your latest blog chapter.  Such a beautiful tribute to your mom, and to the bond you shared.

I wanted to provide a little information as to whether your mom should have been treated with Gem-Cis and not with Gemcitabine alone.    I looked back at the medical literature and guidelines from that time.  Gem-Cis became the standard of care first-line treatment for unresectable cholangiocarcinoma  due to the positive results of a trial in Great Britain titled ABC-02.  This trial demonstrated that the Gem-Cis combination therapy was more effective than Gemcitabine alone.

There was one group, however, within the population of patients participating in ABC-02 who saw little benefit from adding Cisplatin.  This group was patients who were in poorer health, defined as having ECOG performance status 2 (PS2).  ECOG scores run from zero to five.  Patients who are extremely sick or weak are not good candidates for clinical trials, so the ABC-02 ECOG PS2 participants  weren’t in dire poor health.  Within the group of patients participating in the trial, however, the ECOG PS2 subgroup had the most impaired health status.  The trial results indicated that the ECOG PS2 patients who were treated with Gem-Cis had similar (not better) outcomes to those treated just with Gemcitabine.  Reporting on ABC-02 results often notes the ECOG PS2 group saw little benefit from adding Cisplatin.  I put a link below to an article from early 2014 that states this finding.

With this finding a recommendation to treat patients in a poor health status with Gemcitabine alone made its way into various guideline documents around that time.  Judging from some of the stories we have seen from caretakers, a related consideration has been the question of whether Cisplatin’s side effects could be well tolerated by patients whose health status was not robust.  Not being a doctor, I am not in a position to assess whether this consideration would have been relevant for your mother, but wanted to pass this along as a possible explanation for the care offered to your mother.

The medical science for our rare cancer has evolved rapidly, and patients diagnosed in 2021 may have more treatment options than was the case seven years ago.  Still, cholangiocarcinoma can be symptomless in its early stages, and is often not diagnosed until it is very advanced, blindsiding patients and their families.  Your blog describes so well how a family coped with a devastating late-stage diagnosis.  Thank you again for sharing your story.

Here is the link: https://pubmed.ncbi.nlm.nih.gov/24351397/

Regards, Mary

Hi Frances,

Thank you so much for letting us know about your blog.  It paints such a vivid picture of your wonderful mother and the strong bond you both shared.

I went back and looked at your postings in which you described your mother’s illness.  As is the case with many of us, her diagnosis came suddenly, and the cancer was discovered through other, seemingly unrelated, medical issues it was causing.  While not a medical person, my impression is she received attentive medical care from what you described.  Today the science has advanced quite a bit and there are more treatment options for patients, but our cancer continues to be a tough one.

I look forward to following your blog, and appreciate that you are sharing your experience through such beautiful words.

Regards, Mary