Hi from Australia – sister recently diagnosed

Discussion Board Forums Introductions! Hi from Australia – sister recently diagnosed

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  • #101872
    Lones
    Participant

    Hi Laurie, thankyou so much for your reply. I’m so pleased to hear that you’re well 🙂 Thanks so much also for the info on your treatment, I might suggest my sister ask about the option of radiation as well as the Capecitabine (I confirmed last night – yep, that’s what she’s taking)… or if she lets me go with her to some of these appts I’ll raise it myself.

    Thanks also for such positivity, and the ideas about developing a mantra… she and our whole family need this positivity and it was great to feel your strength and conviction. I’ve actually screen-shotted your words and at the right time I’m going to share them with her 🙂

    Thanks again so much,

    Leonie.

    #101870
    Odie
    Participant

    Hello…
    I also had extrahepatic Cholangiocarcinom… specifically perihilar.
    Mine was also caught early with a staging of T2aNOMO…But after surgery I had a positive radial margin with a “small focus” of cancer…(Therefore possibly microscopic cells left behind.)
    My surgeon and my oncologist are both specialists for Cholangiocarcinoma at USC Keck in Los Angeles, California.
    o   I was also put on the oral chemo drug XELODA (Capecitabine), along with an intravenous chemo drug called GEMZAR.  (Protocol = Infusion once a week and the rest of the week the oral drug. Two weeks on and one week off.)
    o   The XELODA-GEMZAR treatment was for approximately 4 months, followed  by a 5-6 week treatment of radiation along with a lower dose of the oral XELODA.

    My oncologist, Dr. El-Khoueiry, stated the pill form of chemo XELODA (Capecitabine) is the worldwide standard currently.    The U.S. is able to nuance the treatment a bit.  My doctor took part and helped develop the study called SWOG S0809…  (Southwest Oncology Group developed  and tested using a combination of these 2 chemotherapy drugs, followed by radiation.)

    I’m not sure this 2 drug protocol would be available in Australia… But perhaps asking for the possibility of radiation after Xeloda to help clean-up any leftover microscopic cancer cells, etc.

    I had 3 cycles of Gemzar, but my white blood count kept dropping to a dangerous level even after lowering the dose 3 times. I had to discontinued the Gemzar and I continued with the Xeloda alone, and they eventually increased the dosage of Xeloda.

    I’ve been scanned every 4 months since completing the chemo and radiation treatment, and all scans have been clear. I am staying positive that this trend will continue.  In October will mark 2 years since surgery.

    My advice to your sister: STAY POSITIVE…. She should develop a daily positive mantra she continually says silently to herself throughout the day… especially during times where she may be feeling more anxiety, etc.   This really helped me, and brought a sense of calmness when I was feeling over-worried or anxious.  Staying positive is half the battle.  She CAN beat this!

    Here is a link to the SWOG study if interested:
    https://pubmed.ncbi.nlm.nih.gov/25964250/   SWOG S0809: A Phase II Intergroup Trial of Adjuvant Capecitabine and Gemcitabine Followed by Radiotherapy and Concurrent Capecitabine in Extrahepatic Cholangiocarcinoma and Gallbladder Carcinoma

    Best of luck to you and your sister!
    Laurie

    #101858
    Lones
    Participant

    Hi Mary, think I just accidentally messaged you instead of posting a reply here….

    Thanks so much for your response. It’s really tricky not being at these appointments to ask questions. I’m moving back home for at least 6 months while she has the chemo, to support her and the kids, so perhaps she’ll let me go along to some of them. In the meantime it’s great to know that her doctors seem to be following the usual course.

    Thanks again,

    Leonie.

    #101857
    bglass
    Moderator

    Hi Leonie,

    Welcome to our community.  I am sorry to hear of your sister’s diagnosis.

    Let me unpack a little the guidance your sister is reporting hearing from her medical providers.  I am not a doctor, but in my appreciation of the information as a fellow patient, this looks similar to what is considered standard of care in the U.S.

    Having a successful Whipple with no indication of spread or lymph node involvement is really good news.  Having the six months of post-surgery chemo has been shown effective in a clinical study from the U.K. called BILCAP in improving overall survival.  If you search BILCAP on the discussion board, you can look at some of the articles about it as well as patient experiences.

    Cholangiocarcinoma can be chemo resistant, but many patients do have positive results.  So chemo is an important tool in the cholangiocarcinoma toolkit.  The reason adjuvant chemotherapy is recommended after surgery is to mop up any microscopic cancer cells that may have been left behind.  Moreover, the surgery itself which is somewhat of a trauma to the body (a good one!) might activate any stray cancer cells at a time when the patient is recovering and defenses are down.

    The chemo used for the recommended six-month treatment is capecitabine.  There is a rare enzyme deficiency called DPD that can cause a strong adverse reaction to capecitabine.  Your sister may wish to ask her doctor if she needs to be screened for DPD.

    Since there is a risk of recurrence with cholangiocarcinoma, patients and their doctors should be prepared that there might be additional treatment needs in the future.  The recommended biomarker or genetic testing reflects that new and emerging treatments are based on genomic mutations or defects that can lead to or contribute to this cancer.  It is good to have this testing as there are new targeted treatments effective in controlling this cancer for patients with certain mutations, and many new targeted treatments are in development.  At the bottom of this message, I pasted some information from the Cholangiocarcinoma Foundation website about this testing.

    Please stay in touch and send any additional questions our way.  Your sister is blessed having such caring support from her family.

    Take care, regards, Mary

     

    Biomarkers Matter for CCA Patients

    #101856
    Lones
    Participant

    Hi all,

    Am sorry to have a need to join this forum, but hello to all from Australia. My sister, who’s 45, was recently diagnosed with bile duct cancer. A PET scan and all the other tests they did initially showed no spread. She’s now had a Whipple, and pathology results confirmed no spread to lymph nodes or anywhere else. Apparently they classed it a stage 2.
    They’ve now recommended 6 months of oral chemo; the doctor said chemo doesn’t “work” for this type of cancer but there’s evidence it can stave off a recurrence? That said, the doctor told me that 50% of people experience a recurrence within 2 years and my sister should be making arrangements for the care of her kids ☹️
    They’re also getting my sister to do what she described as some type of “genetic” testing, as it could assist with treatment options if it recurs.
    Does this all sound like the usual treatment plan? A friend suggested my sister should seek a second opinion, but I feel like maybe that would be more important if it recurs and different treatment options are being considered?

    Any advice or info would be appreciated!

    Thanks,

    Leonie.

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