Discussion Board Forums General Discussion New substack blog on my late mom who suffered from cholangicarcinoma

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  • #101261
    silverkitties
    Participant

    Thanks for the explanation, Mary—unfortunately, I didn’t get a email notification about your posts here even though I signed up. So I only found this after writing my fourth piece.

    But now I understand, even though her oncologist held out the hope, albeit vaguely, that she might get it. She was 82 and declining.

    Btw, how common is it for those suffering from this cancer to be assigned a hematologist? I wonder because I always thought bile duct cancer should be handled by a GI oncologist.

    Anyway,  here is my most recent post that I just published minutes ago: https://francesachiu.substack.com/p/running-on-empty?r=22hhf&utm_campaign=post&utm_medium=web&utm_source=copy

     

    #101258
    bglass
    Moderator

    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

     

    #101248
    silverkitties
    Participant

    Thank you, Mary—

    I still think a lot about her diagnosis and am still not happy with the way she was treated: I keep wondering why my mom was not given the gemzar and cisplatin. I keep wondering why she was bit assigned a GI specialist rather than a hematologist. Not that I can do anything at this point, of course, but I think about it all the same. I do hope things have changed considerably since then!

    I have a new post up about the discovery of her cancer. https://francesachiu.substack.com/p/kingdom-cancer?r=22hhf&utm_campaign=post&utm_medium=web&utm_source=copy

    #101236
    bglass
    Moderator

    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

     

    #101235
    silverkitties
    Participant

    I have been grieving for my late mother since her death from bile duct cancer in October 2014. Some days are better than others; in fact, I like to think that the very worst is over.

    My blog begins with a prologue and an account of her first stroke resulting from her cancer. It will explore the ways I dealt with grief over the past 7 years. I hope this helps anyone who is mourning the passing of a loved one. https://francesachiu.substack.com/p/a-stroke-of-fate?r=22hhf&utm_campaign=post&utm_medium=web&utm_source=copy

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