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Thread: BRCA2 carriers: I have a question for you please

  1. #11
    Regular User
    Join Date
    Jun 2017
    Hi Dirkt:
    Thanks a lot for your response. I am so happy things are working so great for you. How well did you tolerated the Ffx?

  2. #12
    Regular User
    Join Date
    Apr 2016
    After the first phase (olaparib & tamoxifen) which lasted 1 month, I was on olaparib alone during 11 months.
    There were some interruptions during the periods that my stents were occluded and I had to undergo an ERCP cleaning. They allowed me to pick up again after this short interruptions of some days.
    After my whipple operation, I guess the interruption was to long and there was no longer possibility to stay in this clinical trial.
    Indeed, I'm doing very fine since then. I'm back on full time work since this month. However, I would be happy to be eligble for some kind of treatment.
    Just waiting to see what will happen next, is not always easy; but I realise that I should be thankful that I made it this far.

  3. #13
    dirk, why do you want to be eligible for a treatment? It sounds like you are NED.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.

  4. #14
    Regular User
    Join Date
    Apr 2016
    Indeed NED, only some relatively small colateral damage (neuropathy, incisional hernia, fat malabsorption) reminding where I come from. My conditional survival statistics (I read about thes on this forum) are better than at diagnosis. Maybe I did enough, but I would blame myself if I could have done more if ...
    I have 4 children between 21 and 9 years, who are not tested yet but potential brca carriers. I think that any treatment that I may test and that works for me, might help others in similar situations.
    Belgian, 49 years
    Sep 2013 - abd pain
    Nov 2013 - jaundiced, DX PC, 1.6 cm tumor in head, CA19.9 315 U/ml - whipple stopped, upgraded to stage IV, biggest metastasis liver removed, wall stent placed - porthacat placed
    Dec 2013 - May 2014 - Folfirinox, 12 rounds, complete remission, CA19.9 4 U/ml
    (though still one or more bulky spots on pancreas and liver)
    Mar 2014 - BRCA2 c.4935delA
    Oct 2014 - Oct 2015 - clinical trial with Olaparib (NCT02093351), CT scans as before, CA19.9 normal
    Mar 2015 - Oct 2015 - recurrent cholangitis (7) due to occluded stents (sludge), ERCP cleaning
    Nov 2015 - Planned for biliary duct removal or whipple (depending on activity spot on liver)
    Nov-Dec 2015 - recovery in hospital after successful whipple (lymphatic fluid leak)
    Dec 2015 - No treatment recommended, CA19.9 normal + starting Creon
    May 2016 - Fat malabsorbation confirmed by tests + incisional hernia
    Aug 2017 - CT-scan & CA19.9 normal, liver and panchreas blood tests better, weight +8kg

  5. #15
    Newbie Top User BobInBonita's Avatar
    Join Date
    Mar 2014

    Thanks for the update, and a bigger yet thank you for your attitude towards trials. It adds some sense of meaning to this disease when we can feel that at least the knowledge gained may help oters in the future. As a BRCA carrier, that help could well go to your own family.

    Are you eligible to continue Olaparib as a "compassionate use" patient since you had been on the trial?

    Best wishes to you and your family

    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.


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