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Thread: Stage 4 - Diagnosed about 1 month ago

  1. #11
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    Quote Originally Posted by BrigitteM View Post
    Dear Legodude
    Folfirinox is a very aggressive regimen but also one that has shown the best results; although some pancreatic tumors don't respond to it. Make sure your oncologist knows about every of your reactions to the chemotherapy. Feeling overwhelmed, tired, and sick is normal and very understandable. We can also offer tips to deal with certain side effects. Don't hesitate to ask. You are not alone

    Do you know the name of your mutations? This information might help to point to additional treatment.

    Warmly,
    Brigitte
    Thank you, Brigitte. I try to cover everything with my oncologist every time I see her (every 2 weeks). My wife usually goes with me to make sure I don't forget anything. We're keeping a close eye on the Oxaliplatin. It seems to be giving me the most trouble (hives, neuropathy).

    I do have good news this week. I had a CT scan on Monday. The tumor in my pancreas has shrunk significantly. It's about 1/10th the size (by volume) as compared to my first scan (Apr 23). The multiple tumors on my liver have also shrunk, but they didn't provide any measurements of those. The lymph nodes around my pancreas have also shrunk. CA 19-9 is still high, but decreasing some. It's about 77000 now. I had 6 Folfirinox infusions prior to this latest scan.

    My mutations are TP53, ATM, and KRAS. I've looked through dozens of clinical trials. They are all for when standard treatment is no longer tolerable or stops working. I'll keep looking.
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

  2. #12
    Super Moderator Top User ddessert's Avatar
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    ATM gene mutations are suspected to be sensitive to platinums (like the Oxaliplatin you are getting in FOLFIRINOX) as well as PARP inhibitors and perhaps some others (like MMC, radiation?).

    I would certainly check into that before Oxaliplatin takes its toll (neuropathy) and is removed from your treatment plan. Too often I see oncologists that don’t understand the link drop the platinum and go to either FOLFIRI or Gem/Abraxane, which can be a huge mistake.

    If your oncologist is not aware of the link (ATM-Platinum-PARPi-PanCan), ask her to consult with Dr. Kim Reiss-Binder at UPenn who is running clinical trials in these mutations. Dr. Reiss-Binder is very generous with her time and expertise and should have no problem talking with your oncologist and discussing future treatment options. She is also running trials on using PARPi in place of platinums for patients who have developed neuropathy or can’t tolerate platinums.

    The Oxaliplatin may be doing the heavy lifting on combatting the tumor so it’d be a shame to have to drop it.
    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
    @pancanology

  3. #13
    Hey folks:

    I have a question, and yes, I did do a search both here on this forum and via Google.

    What does the acronym NED mean ?

    I take it refers to some sort of remission, but darn if I can figure out the acronym !

    EDIT:

    Okay, found it at the link below.

    NED = No Evidence of Disease

    https://www.cancer.net/cancer-types/...ypes-treatment
    Last edited by RamblinWreck; 08-19-2019 at 01:48 AM.

  4. #14
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    Quote Originally Posted by ddessert View Post
    ATM gene mutations are suspected to be sensitive to platinums (like the Oxaliplatin you are getting in FOLFIRINOX) as well as PARP inhibitors and perhaps some others (like MMC, radiation?).

    I would certainly check into that before Oxaliplatin takes its toll (neuropathy) and is removed from your treatment plan. Too often I see oncologists that don’t understand the link drop the platinum and go to either FOLFIRI or Gem/Abraxane, which can be a huge mistake.

    If your oncologist is not aware of the link (ATM-Platinum-PARPi-PanCan), ask her to consult with Dr. Kim Reiss-Binder at UPenn who is running clinical trials in these mutations. Dr. Reiss-Binder is very generous with her time and expertise and should have no problem talking with your oncologist and discussing future treatment options. She is also running trials on using PARPi in place of platinums for patients who have developed neuropathy or can’t tolerate platinums.

    The Oxaliplatin may be doing the heavy lifting on combatting the tumor so it’d be a shame to have to drop it.
    Thanks for that info! Much appreciated.

    No, I doubt my oncologist knows much more than what the mainline chemo treatments are. At least that's all the info she presents to me. She's not giving me any options outside of that.

    And we have discussed the effects of the Oxaliplatin. She said she'd either drop it or switch to gem/abrax when the neuropathy got worse. And it is slowly getting worse with each treatment.

    I see her tomorrow, and I'll certainly bring up Dr. Reiss-Binder. Thank you again for that info.
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

 

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