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Thread: 50 months post diagnosis stage 4

  1. #1
    Experienced User
    Join Date
    Nov 2015

    Thumbs up 50 months post diagnosis stage 4

    My husband was diagnosed spt 2014 stage 4 pancan - liver mets. they gave him less than one year. Here we are, latest scan stable , so his oncologist will put him on edoxan ( oral chemo) because he feels tired. She says this is less agressive than taxol. IF stable or only small progression in 3 months, he will stick to this, otherwise he will have to come back with taxol. Anyone experience with this chemo? Thanks

  2. #2
    Experienced User
    Join Date
    Dec 2017
    Great news! Congratulations

    Was there surgery or was it just chemo? Can you share with us what treatment your husband has received? Thank you very much
    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.

  3. #3
    Regular User
    Join Date
    Apr 2016
    Congratulations from a fellow Belgian (I guess)!
    I hope that the endoxan will do and will be more tolerable.
    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

  4. #4
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
    Wow! This is really good news. As for Endoxan, it seems to be a pretty common drug used for several conditions including blood cancers or breast cancer. I've not heard about its use for pancreatic cancer, but it would be good to know the oncologist's rationale and see how it works for your husband.

    You might have more luck on blood cancer or breast cancer forums.
    Last edited by BrigitteM; 11-23-2018 at 06:24 PM.
    __________________________________________________ ___________________
    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

  5. #5
    Experienced User
    Join Date
    Nov 2015
    My husband had folfirinox, then folfiri because of neuropathy. Then 5 fu maintenance.Folfiri again. Cancer came back so they put him on Gemzar for about 10 months. Then taxol and now, as scans are more or less the same since april 2018, and as he fells relay tired and a bit desoriented at times, they put him on edoxan ince yesterday.

  6. #6
    Experienced User
    Join Date
    Nov 2015
    Thanks , he is treated at the CHU at Liège not happy about the oncologist though. It's just a matter of luck, or the right DNA

  7. #7
    Newbie New User
    Join Date
    Feb 2019
    That is encouraging. Did he have any surgeries or completely treated with Chemo?


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