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Thread: Almost 5 years NED

  1. #1
    Super Moderator Top User ddessert's Avatar
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    Oct 2013
    Blog Entries

    Almost 5 years NED

    4 years and 9 months after surgery, my latest scan showed a new 2mm nodule in the lower left lobe of the lung. It joins 2 other similarly sized spots that have been there unchanged for years. Hopefully it is some small bug I breathed in during one of my bike rides and will go away.

    The CA19-9 numbers are up a little, but still below the 39 threshold. However, my CA19-9 has never been above 48, so that's not comforting. It went from 12 to 24 in the last 6 months - also not comforting, but also not definitive.

    Too small to do anything about, but wait for the next scan. I'll continue on the Johns-Hopkins GVAX trial next week, after the PanCan advocacy day in Washington, DC.

    I'll try to move my next scan to a 5-month interval so that I will know the results before I have to choose the 2018 health care plan. I was planning on scaling back the major cancer center coverages because of the 5-year NED and moving to a new part of the country where there are fewer major centers.

    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 - Radiation+Xeloda, 25 days in 5 weeks
    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 2018 - NED
    Mar 2013-present - NCT01088789

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Let me be the first to congratulate you! Simply excellent. Do you find that some of your most intense riding was when you were in the midst of the battle? I rode the most when I had the greatest tumor burden, oddly enough.

  3. #3
    Newbie Top User BobInBonita's Avatar
    Join Date
    Mar 2014


    You're supposed to swallow the bugs, not inhale them!

    Would you have time to squeeze in two 3 month scans before open enrollment ends? The new little nodules will hopefully turn out to be nothing, but I hate to see you go too long before you know. That would also give three data point to better see a trend. If the scans don't work out because of insurance, maybe the CA19-9.

    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.

  4. #4
    Experienced User
    Join Date
    Jan 2017
    I am hoping that it is a small bug also David! It could be anything. It's very small. I will keep you in my thoughts and wish that little 2mm nodule away.
    9/16-68 year old husband diagnosed with Stage 3 unresectable pancreatic cancer
    9/16-12/16- Folfirinox 6 rounds of treatment
    12/16-CT scan, no signs of disease and normal tumor markers
    1/17-2/17- IMRT radiation 28 treatments with Xeloda
    3/17- CT scan, no signs of disease and normal tumor markers
    5/17- CT scan, no signs of disease
    7/31/17- Pathology report: "No residual tumor, complete response to treatment, grade 0. T0N0M0. NED
    8/17-CA 19-9 254
    10/17-CA 19-9 537
    11/14/17- CT scan mets to the liver-3
    11/17-Started Gemzar/Abraxane
    12/17-1/18-Hospitalized for pneumonia and bilateral pleural effusions, chest tubes placed. Needed 2 units of blood due to low hemoglobin
    2/18- Ca 19-9 went down from 4611 to 158
    3/18-CT scan, 2 liver lesions shrunk and one is gone
    3/11/18-fractured femoral neck
    3/14/18-pleurx catheter placed in right lung to drain pleural effusion
    3/15/18-hemiorthoplasty to repair left hip fracture

  5. #5
    Experienced User Dand's Avatar
    Join Date
    Jul 2016
    David... Congratulations... Keep the good news coming... appreciate your great knowledge that you have shared with many of us.
    BRCA2 Positive
    7/26/16-CT Scan with Liver Biopsy diagnosis Stage IV Pancreatic Cancer + metastatic of liver.
    8/2/16-Clinical Trial Cisplatin/Gemcitabine + Veliparib
    8/15/16- CA 19-9=37,750 U/mL/CEA 126.5 ng/mL
    9/05/16- CA 19-9=19,778 U/mL/CEA 74.9 ng/mL
    9/21/16- CT Scan -13.10% down from Bl (SD)
    9/26/16- CA 19-9=24,528 U/mL/CEA 61.3 ng/mL
    10/17/16- CA 19-9=24,792 U/mL/CEA 42.9 ng/mL
    11/2/16-CT Scan -22.30% down from Bl
    11/07/16- CA 19-9=24,895 U/mL/CEA 30.2 ng/mL
    12/09/16- IR VA Power Port
    12/14/16-CT Scan -26.20% down SD)
    12/19/16- ???? Skipping because of word limitations
    4/3/17- CT Scan -41.50% down (SD) (PR)
    5/24/17- CA 19-9=1,934 U/mL/CEA 10 ng/mL
    6/5/17-CT Scan -50% down (PR)
    6/19/17- Stage II Trial Mono Veliparib
    7/17/17- CA 19-9=1,336 U/mL/CEA 9.1 ng/mL
    8/6/17-CT Scan -over 65% down (PR) no new sites
    11/20/17- CA 19-9=380 U/mL/CEA 7.6 ng/mL
    1/1/18- CA 19-9=304
    4/22/18 CA 19-9=182 U/mL/CEA 6.5 ng/mL

  6. #6
    Senior User
    Join Date
    Aug 2016
    David, I hope your NED status always stay with you forever, and you will never tired share your knowledge with us here. Best wishes from me.

  7. #7
    Senior User
    Join Date
    Aug 2015
    Oh, I am so hoping to hear that it is, indeed, some small bug or something. Your journey certainly gives everyone hope and I, for one, am looking forward to hearing that you stay NED for years and years to come.

  8. #8
    Keep us posted, David. You are an inspiration to us all.
    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

  9. #9
    Regular User
    Join Date
    Apr 2017
    That's excellent news...Best wishes for indefinite NED status!!

  10. #10
    Experienced User
    Join Date
    Oct 2016
    All the best for continued NED status, Dave.


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