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Thread: Almost 5 years NED

  1. #21
    Regular User
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    May 2017
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    Frederick
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    Where did you go celebrate? hopefully with a good crabcake!
    eds
    1/8/17 Diagnosed with Operable PanCan
    1/31/17 Started Immune therapy clinical Trial at Hopkins
    2/13/17 Whipple Surgery
    5/8/17 Completed SBRT treatment at Hopkins
    5/16/17 Started first cycle of Chemo Gemcitabine and Xeloda
    6/1/17 Admitted back into Hopkins with Gas in Abdomen from perforated bowel
    7/5/17 After a week in the hospital and a months rest delay Chemo for 3 months
    7/21/17 Quarterly CT Scan shows no evidence of Recurrence
    9/29/17 Quarterly CT Scan shows local recurrence of growth on the pancreas body

  2. #22
    Regular User
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    Nov 2015
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    So happy for you!!!!!

  3. #23
    Regular User
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    May 2017
    Location
    Clemson, SC
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    I'm down right now due to my wife's condition, but your case is one of the hopes that I hold in my heart that keep us fighting.
    Dec 2016 - Wife stage IV Pan Can w/metastasis to liver @age 39, primary tumor 3.5CM, multiple liver Metastasis from 5CM.
    Jan 2017 - Started mFOLFIRINOX
    Mar 2017 - CA 19-9: 40,000 to 1,200, Tumor shrinkage on Liver 30%
    Mar 2017 - Stopped Chemo due to Parkinson symptoms causing by nausea medicine
    May 2017 - After 7 rounds of Chemo, back pain returned, CA 19-9 3,200
    May 2017 - Primary tumor shrinkage 50%, Liver cirrhosis.
    May 2017 - CA 19-9: 6,163. vomited blood due to Esophageal Varices, recovered after procedure
    June 2017 - Cancer progression, new nodes found on umbilicus. CA 19.9: 24,000
    June 2017 - Started Gemzar+Abraxane, SBRT for 5 Rounds, CA 19.9 16,000
    July 2017 - Not Responding to SBRT, Stent placed for Jaundice. Stomach swells due to ascites. CA 19.9: 21,000

  4. #24
    Newbie New User
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    Aug 2017
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    Dallas, TX
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    David, I am not sure if you remember me. My husband Robert and I met you and your wife a few years ago. Robert also had his Whipple at MDA 5 years ago this Sept and he is in the same Gvax trial at Hopkins.
    I am so happy to hear that you are doing well and still biking!
    Robert has been doing well too but he also has 2 lung nodules that they have been watching for a few years now. They have slowly been growing and last scan showed that 2 of them are a cm now and it was suggested that he get a biopsy. Rather than do a needle biopsy, whuch is not as accurate, we chose to have a wedge biopsy at UT Southwestern on 8-16-17. We are hoping beyond hope that these are not a reoccurance or at least that the vaccine has destroyed any cancer that was there. Our trial nurse told us that another trial patient had a needle biopsy of her lung nodules and it showed necrotic tissue only. So we are cautiously optimistic.
    Wishing you the best.
    Kristina Stacey

  5. #25
    Moderator Top User ddessert's Avatar
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    Oct 2013
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    Wylie, Texas
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    Yes, I remember! I have a new lung spot that looks to JH at an infection that is clearing up, and I hope it is. Will find out more in Nov.

    I remember telling you about the GVAX person with a resectible recurrence and when they pulled it out, it was just immune cells that looked like they'd taken care of the tumor. Let's hope that is in store for everyone in the trial!
    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-Dec 2016 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  6. #26
    I hope the news in November is good, David, We all look to you for guidance, and I can't adequately express my appreciation. Sending positive thoughts!
    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

  7. #27
    Newbie New User
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    Dallas, TX
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    That is definitely my hope for all of us.
    The Pulmonologist at UTSW asked if Robert always lived in Texas and mentioned that these type of lung infections are common in Texas. So, that was encouraging too.

  8. #28
    Top User Queensville's Avatar
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    Ontario Canada
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    You are truly a shining light.
    July 22 2011 Hubby (64) Diagnosed PanCan. Sept2011- Feb 2012: Abraxane/Gemcitabine. Feb-May 2012:Gemcitabine only. June-Sept 2012 5FU. Sept 4-no more chemo - Just living life. Multiple stents. Jan 2013/18 month mark. Mets everywhere. Looking for a bumper sticker that says 'Stay at safe distance - Driver suffering caregiver burnout'. Hospice Thurs Feb 28 2013. March 12 2013 he went off to his new adventure where we will one day meet again. It was 20 months from date of diagnosis until now.

  9. #29
    Top User Queensville's Avatar
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    I notice that you have Quebec PanCan Study. Is that Quebec Canada?
    July 22 2011 Hubby (64) Diagnosed PanCan. Sept2011- Feb 2012: Abraxane/Gemcitabine. Feb-May 2012:Gemcitabine only. June-Sept 2012 5FU. Sept 4-no more chemo - Just living life. Multiple stents. Jan 2013/18 month mark. Mets everywhere. Looking for a bumper sticker that says 'Stay at safe distance - Driver suffering caregiver burnout'. Hospice Thurs Feb 28 2013. March 12 2013 he went off to his new adventure where we will one day meet again. It was 20 months from date of diagnosis until now.

  10. #30
    Regular User
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    Oct 2016
    Location
    NYC AREA
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    David, I'm just getting back to biking and did a tour of Brooklyn this morning. We don't have bugs in NYC but I'm sure they are there where you are. If it's not a bug, like I mentioned to someone on the other board, it's a barnacle. Happens with age. Thinking of you.
    9/25/16 - Distal pancreatonomy to remove growing "cyst" on tail of pancreas
    9/30/16 - Path confirms PDAC, 0/16 lymph nodes, clear margins, categorized 2A
    11/06 - start Chemo - Gemcitabine/Xeloda
    5/15/17 - Scan show growth in previously unidentified lung nodules. 1 in each lung
    5/30/17- Lung biopsy confirms PDAC in lungs
    7/17 - awaiting to be placed in immunotherapy trial at MSKCC
    7/17 - began Clinical Trial of KO-947, an ERK inhibitor
    9/19/17 Taken off trial, not doing anything
    9/21/17 considering FOLFIRINOX followed by some local treatment for lungs. CA-19 21
    9/21/17 also considering clinical trial at NIH

 

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