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Thread: Whipple

  1. #21
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
    Thank you for giving us some news on a regular basis. Twelve years! This is so inspiring for me. I am at 2 years post surgery and would love to be able to add the figure 1 next to the 2! I have some lung nodules that are increasing, but my markers were slightly lower, so I am still considered NED. I am crossing my fingers.

    __________________________________________________ ___________________
    1/12/2016 No symptoms except ongoing fatigue; blood test revealed elevated liver enzymes
    1/18/2016 Liver ultrasound, then MRI confirmed enlarged bile duct
    1/21/2016 ERCP and placement of a temporary stent
    1/28/2016 CT-Scan showed a lesion on the head of pancreas
    2/09/2016 2nd ERCP + EUS + FNA
    2/12/2016 DX Borderline resectable pancreas ductal adenocarcinoma - Stage 3 @ 61
    2/24/2016 FOLFIRINOX 3 cycles (6 infusions)
    5/12/2016 CYBER-KNIFE Stereotactic Radiation 3 sessions
    6/16/2016 WHIPPLE + portal vein and right hepatic artery reconstructions - 0/19 nodes pos - no mets. Restaged to 1A
    8/31/2016 FOLFOX for 3 cycles (6 infusions)
    Sept 2016 Know Your Tumor - PANCAN.org
    11/4/2016 CT Scan clear - NED
    May 2017 Liver lesion - DX mild fatty liver disease - NED
    Aug 2017 Several small lung nodules - slow growth - NED until August 2018
    Aug 2018 Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    March 2019 Lung nodules are stable

  2. #22
    Regular User
    Join Date
    Dec 2006
    I can't seem to stay away from this forum and felt the need to lift up others today, as they battle this terrible disease. If you read the entire thread you can see it has been 13 years, 8 months since the Whipple procedure. I was 68, four months when I had the Whipple and in 2 weeks I will turn 82 years old.
    My journey started on December 16, 2005 and I have been totally blessed. I have never gained my original weight back from 162 to current weight of 145. After the Whipple, I developed a pain in upper stomach that would just come on suddenly. I would take gas-x to relief the pain. About 6 months ago it completely went away. I have no idea what the cause was.
    I wish all only the best but just wanted to check in and give some hope. All the credit goes to GOD for leaving me here.

    Ampulla of Vater Carcinoma
    Whipple Procedure 12-16-2005
    Tumor Staging: pT2 pNO pMX
    Moderately differentiated invasive Adenocarcinoma of Ampulla of Vater, 3.0 CM Tumor Invading but not through Muscularis Propria
    Two Oncologist stated no benefit would be gained with Chemo or Radiation so none was performed

  3. #23
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries
    Thanks, Ken! It’s been over 6 years since my Whipple and I occasionally get those same gas pains that are resolved by Gas-X. They’re so bad and sudden that I’m carrying Gas-X with me just in case. I will be pleased if it goes away for me like it did for you.
    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

  4. #24
    Newbie here.

    What does "NED" mean ?

  5. #25
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries
    No Evidence of Disease

    Saying you’re “Cancer Free” is impossible because we probably all still have cancer cells lurking about inside. Perhaps they are too small to see in scans? Perhaps they’ve landed on organs that don’t allow them to grow any further?

    NED is our way of saying that all our bloodwork and imaging tests don’t show any cancer but we can’t be sure it’s really all gone.

  6. #26
    Newbie New User
    Join Date
    Jan 2014
    More good news! I posted on here a few years ago that two people I know were surviving pancreatic cancer after whipple surgery and chemo treatments. Guess what? They are both still living! My friend's sister is in her 50s and had a setback and more chemo. She is surviving... still attending weddings, seeing grandchildren born and travelling.

    My friend's husband, also in his 50's is feeling fantastic and has been declared cancer-free for a number of years already. He even ran a half marathon a few years ago.

    In other words, pancreatic cancer is NOT an automatic death sentence. Yes, it's a grim disease, but don't give up hope if you or a loved one have it. There are survivors, and you or your loved one may be one of them!

  7. #27
    Thank you Prairie Gal !
    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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