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Thread: Dadís 2nd Treatment

  1. #1
    Super Moderator Top User ddessert's Avatar
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    Dadís 2nd Treatment

    Dad had his second treatment of Gem/Ox two days ago. I know heís sleeping a lot right now. Iím not there but will be heading back in a week.

    It took us 3+ weeks to get a bile duct stent placed after symptoms started. That stent needed to be placed before his 2nd treatment. It really resolved the jaundice and hopefully helped him physically, but the treatment was only two days later.

    Being in a local oncology office has been a real handicap. So has his age (82) as many doctors seem to ďexpectĒ that cancer patients at that age will die, so why even try hard?

    I feel that there is some note in his records (be the local oncologist) that says heís a ďgonerĒ and that extends the timeline for every procedure. 3 weeks to get a ureter stent. Another 3+ weeks to get a bile duct stent. 1 extra week to get a chemo port. Every procedure with an outside doctor is requiring a pre-appointment (to check his condition) before scheduling the actual procedure. The extra delays mean more weight loss, less mental acuity, and increased weakness.

    His CA19-9 numbers are >700,000, higher than the local oncologist can measure. Iíve requested that they just send the samples to Quest or LabCorp because their results are meaningless to us. But you cannot force a doctor to do anything...

    They all are aware of my background and it seems to be intimidating to them. I need to find a way to use that to my advantage to get what we need. I certainly have some connections in the PanCan world...

    But there is a fine line between compliance and triggering resistance. Unless Iím talking to them face-to-face, Iím unsure which way it will go.

    I am still recording my in-the-moment observations on video with the idea that I will post on my YouTube channel, Pancanology. This experience with my father has reminded me that our later recollections are very different than the in-the-moment ones. Iím trying to visually record those right now.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  2. #2
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    David, this is outrageous treatment - what your dad is going through. I think all stage 4 patients are treated with similar prejudice but your dad's story is horrible. The time that he has had to wait is ridiculous. In the years time period I've been reading posts, I can't remember any like this - stalling treatment. This place needs some reorganizing. The lab tests - tell them that you are considering other treatment options and clinical trials and those people need a more real world basis of comparison so you need the labs done at quest or labcorps. Aren't you furious about this? Is anyone else furious about this? I am. I'm watching for your in the moment docs of this. The topic of the nihilistic attitude towards stage 4 patients deserves attention.

  3. #3
    Super Moderator Top User ddessert's Avatar
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    I have no proof that this is what’s happening or why. It’s one of those gut feelings you get.

    The GI did tell us that dad’s oncologist did not think he could handle anesthesia and was not looking good. That was at least one reason that he wanted to see dad in person before scheduling an ERCP after 3 weeks of various tests (ultrasound, MRCP, blood tests, observations by other doctors, and a 7-day old CT/PET scan). I told his office weeks ago that this was all headed towards an ERCP, but they made him go through 3 weeks of these tests and still required a pre-surgical appointment before the ERCP.

    These all point towards something in dad’s medical records that give all other doctors pause before treating him. I’ll be there next week and will get those records and the doctor’s notes.

    In the meantime, dad is getting the chemo treatments so that we’re not willing to rock the boat too much now. Moving to yet another oncologist would only delay things even further and they would get those same notes to color their impressions before he’s even seen.

    We need to hope for tumor reduction and some stability before we can eject this oncologist. Getting furious with him right now won’t help my dad.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  4. #4
    Best wishes for your father's treatment and favorable results.
    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.

  5. #5
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    It makes me outrageous to think that pancreatic cancer patients are being triaged, especially for stage 4.
    It just feels like a hopeless cycle: bad prognosis -> unfavorable allocation of medical resources ->worse prognosis.

    Best of luck to you and your dad!
    Oct 2017 - Mom's annual checkup found elevated CA19-9 (280 kU/L)
    Nov 2017 - Diagnosed. Pancreatic Adenocarcinoma on body/tail of pancreas, ~3cm mass
    Dec 2017 - Distal pancreatectomy, 3.5*3*2 mass removed, 2/17 lymph nodes.
    Jan 2018 - CA19-9 dropped to 30 kU/L 4 weeks after surgery.
    Feb 2018 - 3 rounds of S1
    June 2018 - CA 19-9 from 50 to 170 KU/L. CT + PET confirmed recurrence at remainder of pancreas + peritoneal mets.
    July 2018 - Started Gem/Abraxane
    Sep 2018 - Peritoneal mets disappeared on CT. CA 19-9 dropped to 35.
    Nov 2018 - Finished 4th round of Gem/Abraxane. Clear CT. CA19-9 dropped to 22.

  6. #6
    Super Moderator Top User ddessert's Avatar
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    Youíre right, mel.

    I have thought that many of us turn to PanCan activism because of the poor treatment of our loved ones, not the poor treatment of ourselves. Thatís my observation now having been on both sides of the coin.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  7. #7
    Senior User
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    Mar 2018
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    David, of course you are doing the right thing waiting for your dad to stabilize on this treatment. I'm just mad that he had to wait. I hope the best for him and I guess I am feeling relaxed about it knowing you are his advocate.

    What about pancan activism - thinking about what that means I am imagining raising awareness, especially with legislators, raising money for trials, raising awareness of the public at large, etc. This is all very important for progress fighting the disease. Is there anything addressing patient rights happening currently? Wow, this is sounding greedy. I confess ignorance here. Sometimes I get the feeling I'm being told ( not by this forum of course) we should just shut up and be damn happy to be alive for a little while.

  8. #8
    This thread has been really helpful to me. I had the feeling that my wife was being "cast aside" when I asked about the genetic testing. The CA19-9 testing debacle definitely reinforced the feeling that we were being put on the "side-track".

    Dad and Grandad had a combined 108 man years of railroad experience. So, sorry for the railroad lingo, but it's in my blood.

  9. #9
    Regular User
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    Jun 2019
    Posts
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    I'm sorry about your dad, David. Hopefully he can find better care soon.

    Just throwing in my me too here... I'm nearly 6 months into my new life with cancer. I have seen a total of 6 different oncologists at 3 different locations, including one of the top specialists at MD Anderson. I've asked so many questions about treatments. The only answer I get is that chemo is my only option. Just take chemo and wait and see...

    The doctors don't seem to want to think about it or explore any ideas or take any path outside of basic chemo. Hell, they won't even count or measure any of the tumors in my liver.

    Perhaps I truly am a lost cause, but it's still frustrating to get the same, damn answer from every doctor.

    Sorry for the rant. Sounds like I'm not the only one in this situation. My thoughts are with you all.
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 after 9 rounds of FOLIFRINOX, switched to FOLFIRI due to neuropathy
    Oct. 1, '19 - CA 19-9 44,000
    Oct. 28, '19 - CA 19-9 26,000 (cont. w/ chemo...)
    Houston,TX

  10. #10
    And our thoughts are with you too LegoDude !

    And also with David and his Father !
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-14-19 - Constipation with pain below the right rib cage. Again "Your old, take Miralax". I say BS and go to Urgent Care.
    7-15-19 - Urgent Care says "BS" on "Miralax" & orders abdominal CT scan.
    7-19-19 - Abd CT Scan reveals 6.0 x 4.9 cm mass in the pancreatic head which encases the superior mesenteric vein.
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced to 4.6 x 3.2 cm (50% reduction), but now evidence of malignancy in the lymph nodes.
    10-4-19 - Onc suggests gemcitabine nab-paclitaxel due to lymph node increase/high CA19-9 obtained at 1st & 2nd treatments. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

 

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