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Thread: 5 year survivor!

  1. #1
    Regular User
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    Jun 2014
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    5 year survivor!

    My mum has just reached the 5 year milestone. I cant believe we have gone so far now. We really were not expecting this much time when mum was first diagnosed. I'm glad mum had the chance to go on overseas trips, saw her first grandchild among other experiences that we try to create for her.

    Mum is still undergoing chemo as a preventative measure, although recently her ca19-9 has started increasing again. Scans done 3 months ago indicated all clear though (the doc orders scans every 4 months) and we are due for another next month.

    I'm just wondering if it's a good idea to push for an earlier scan? Would it make a difference? Our doc doesn't think so and I know my parents put a lot of faith in him. What would you guys do?

    In the meantime the ca19-9 is just slowly creeping up.. I guess I'm kind of worried this means a recurrence. And if so, what other options are we left with? We've pretty much tried all the chemo options out there. Gemzar and s1 did not work for my mum at all. Folfirinox is the only one that has helped my mum suppress the Mets before. Now shes currently on folfox (or is it folfiri - my parents just told me it's a 2 drug variant from folfirinox); I'm guessing the doc will likely put my mum back on folfirinox if the scan confirms recurrence since we have previously seen results from it twice.

    Has anyone had experience that the same chemo cocktail that once worked for you, continues to keep working? I know theres such a thing as drug resistance, furthermore my mum has already tried it twice, thankfully with success. I'm just hoping to find some success stories here from other folks here.. and if anyone had experience or advice to share, I'd be glad to hear them!

    Thank you.
    2014
    May 30 - Mom admitted into hospital due to painless jaundice
    June 2 - CT scan confirmed ~4cm mass at head of pancreas.
    June 6 - Whipple successfully carried out!
    June 12 - Biopsy report out. Resection margins are clean, but unfortunately 11/16 lymph nodes were positive.
    July 30 - CT scan shows a 0.7cm mass at one of the lymph nodes at original site. Ca19-9 markers at 110, down from 1,700 when first admitted.
    Aug 6 - Blood work shows increase in CA19-9 markers to 120. First line of chemo will be Gemcitabine/Abraxane.

    2015
    Mar 11 - After 4 rounds of Gemzar today her CA19-9 suddenly shot up to 458, from 252
    Mar 16 - PET scan confirms mets to lung. switching to Folfirinox
    Apr 1 - CA19-9 rose to 699 after 2nd round of folfolfirinox. Unfortunately this is not an April Fool joke

  2. #2
    Hi. I'm in a similar situation. Going back to chemo drugs I've used before. FOLFIRINOX didn't work for me, it seems. How many rounds of that did your mother use before it started working?
    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.

  3. #3
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    Mum usually has about 4 rounds before we start seeing the decrease in ca19-9. Gemzar works better for you eh?

  4. #4
    Yes, Gemzar/Abraxane worked. FOLDIRINOX apparently didn't. I'm being taken off it after three tries, because the CA 19-9 kept doubling.
    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
    Moderator Senior User BrigitteM's Avatar
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    Sep 2016
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    374
    I don't know whether this trial is available in your area, but I am on a clinical trial that may be an option for your mother. The trial chemotherapy is Abraxane (Gemcitasbine) and a drug RX-3117 (cousin to Gemzar). For more information, check the website: https://www.clinicaltrials.gov/ct2/s...rx-3117&rank=1

    I started this trial in September 2018 and at my last scan the lung nodules are in check and show some shrinking. The chemo is relatively easy to tolerate. In addition, this drug combination has shown to work for stage 4 patients who had become resistant to the 2 first-line chemotherapies Folfirinox and Gemcitabine/Gemzar.

    Let me know if you want more information.

    Brigitte
    __________________________________________________ ___________________
    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

  6. #6
    Senior User
    Join Date
    Mar 2018
    Posts
    138
    brigette, did you mean the two therapies: Folfirinox and gemcitabine/abraxane or gemcitabine/gemzar? I'm curious because I'm now resistant to gemcitabine/abraxane and would like to know of other options.
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose
    - Ca-19 up to over 6,000
    April '19 - Started 5-fu, Abraxane, Oxaliplatin
    Ca-19 down to 600, missing many doses due to
    low platelets
    Aug '19 - Started Irrinotecan, abraxane, cysplatin
    missing doses, low platelets
    Sept '19 - Ca-19 holding steady, ct scan shows 2 small
    lung nodules - 3mm, 5mm, blood clot in pulmonary
    vein, primary and liver mets stable

  7. #7
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
    Posts
    374
    I apologize for creating confusion. There is what is been said of the drugs after Phase 1, and there is what the clinical trial requires from the patient for phase 2. For the phase 2 trial, patients must have metastatic pancreatic cancer and have not received any treatment for metastatic pancreatic cancer.

    I guess the other option is Folfirinox. I wonder whether it would be possible to request a compassionate use from the drug manufacturer.
    __________________________________________________ ___________________
    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

 

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