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Thread: in over my head...help me ;)

  1. #1
    Senior User
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    in over my head...help me ;)

    So, see below for my story, but long story short, diagnosed 3/18 w/stage 2 pc....3 mos gem/abrax....distal pancreatomy/splenectomy...3 mos Folirinox.
    Ned since 1/19...BUT a node showed up in my surgical site in the past month and EUS was done. It's cancerous.
    I am meeting w/radiation tomorrow....but my ONC also said according to my Guardian 360 test that i could qualify for a cliinical trial using Olaparib that matches my mutation. BUT if i start radiation (asap) then i cant do the trial which has no specific start date.
    She has left it up to me??? I'm leaning towards starting radation ASAP if they take me. AM i the only one who thinks my ONC has a little too much faith in my knowledge and decision making abitlity?
    +++++++++++++++++++++++++++++
    53 yrs old
    3/8/18 went to ER w/what i thought to be gall bladder issues...CT and MRI found 1.5 cm spot on body/neck of pancreas
    Followed up with EUS No mets/contained
    3/18 started 4 cycles of Gem/Abrax
    5/18 CT scan showed tumor shrinkage .97cm
    7/18 Pre surgery CT scan shows slight tumor growth (1.2cm) could be necrosis.
    8/3/18 distal pancreatomy/splenectomy-open procedure. No mets, 1 lymph node involvement.(distant) Staged 2B
    9/18 CA19 33 NORMAL
    10/10/18 Starting 3 mos Folfirinox adjuvant therapy.
    5/19 CT scan shows enlarged lymph node at surgical site. EUS biopsy determines cancer. Local and contained.
    6/19 Begin radiation. View Ray MRI 5 day regimen.
    8/19 CA19-9 down! no signs of lymph node!!!
    10/2 3 weeks of abdominal/right side pain. CT scan shows small (1mm) soft tissue nodule suspect for Peritoneal Mestastasis. CA 19- way up (1010)

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Because olaparib matches your mutation, do the platinum treatments also match?

    You had FOLFIRINOX, did your CA19-9 drop while taking it? If it was working well, it could also be an option. If both platinums and PARP inhibitors are options, there may be more science behind the platinums. Although the PARPi may have fewer side effects.

    A problem with radiation is that it is a localized treatment. If there are also small and as yet unseen metastases around, they will be unaffected by the radiation treatments. However, chemotherapy (and olaparib) are systemic treatments and will treat cancer cells anywhere.
    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. #3
    Senior User
    Join Date
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    So sorry to hear your news. About the start date for the trial - you might be waiting forever. I would try to get a definitive answer or move on. I take it that this trial was local? If you really want to try the parpi , I would look for an open trial elsewhere - there are quite a few and they may not require much time out of town. Don't be afraid of the travel. Also, check those trials to see if they will exclude you from them if you have had prior radiation. This is the time to do some of your own research so you have a better idea of your options.
    I'm doing different combinations of Folfirinox now, and I have to say this is a difficult one. I understand where you were at after going from gem/abraxane to folfirinox. I get it, I get it - yuch!
    Best wishes, hang in there and let us know how it's going.
    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 started blood thinner
    Oct. '19 Switched back to POLF treatment - Paclitaxel,Oxaliplatin,
    Leucovorin, 5FU

  4. #4
    Senior User
    Join Date
    Mar 2018
    Posts
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    thx Dave! When i was on Folifirnox i was right out of surgery and NED...but my ca 19 did go up by small amounts. WE chalked it up to inflammation. After Folifirnox was completed, about a month after my ca 19 did get down to 35 my lowest (highest was 84)
    But after that every 3 weeks my ca19-9 went up by about 10....thats why we finally ordered the EUS and biopsy. Found the node and my ca19 is up to 200.
    I really like the Radiology ONC, he is very decisive and seems to think this 5 day more intense radiation will be a good thing. He will target the node and the small tissue mass that has been lurking in my surgical site. Then we will discuss a systematic approach with possible gemcitibine. Or maybe there will be clinical trials then. I think im good w/zapping this while i can. Praying the 5 day regimen which is MRI guided, won't break me THx so much for your responses! I hope you are doing well.
    +++++++++++++++++++++++++++++
    53 yrs old
    3/8/18 went to ER w/what i thought to be gall bladder issues...CT and MRI found 1.5 cm spot on body/neck of pancreas
    Followed up with EUS No mets/contained
    3/18 started 4 cycles of Gem/Abrax
    5/18 CT scan showed tumor shrinkage .97cm
    7/18 Pre surgery CT scan shows slight tumor growth (1.2cm) could be necrosis.
    8/3/18 distal pancreatomy/splenectomy-open procedure. No mets, 1 lymph node involvement.(distant) Staged 2B
    9/18 CA19 33 NORMAL
    10/10/18 Starting 3 mos Folfirinox adjuvant therapy.
    5/19 CT scan shows enlarged lymph node at surgical site. EUS biopsy determines cancer. Local and contained.
    6/19 Begin radiation. View Ray MRI 5 day regimen.
    8/19 CA19-9 down! no signs of lymph node!!!
    10/2 3 weeks of abdominal/right side pain. CT scan shows small (1mm) soft tissue nodule suspect for Peritoneal Mestastasis. CA 19- way up (1010)

  5. #5
    Senior User
    Join Date
    Mar 2018
    Posts
    157
    thx Jaimie, i think about you!! Folifirnox was rough for me....my digestion was just a mess...i couldnt leave the house b/c i never knew when i would have to go! I never thought i would poop normal again. BUt will say that after being off treatment for 7 mos...im pretty much back to normal. 2 citrucel tablets every morning. OMG that has made such a big difference. It came from my sisters gastrointologist.
    Ask your doc about the Olaparib trial (also known as astro zeneca) My doc says it has some legs! Wishing you the best!
    +++++++++++++++++++++++++++++
    53 yrs old
    3/8/18 went to ER w/what i thought to be gall bladder issues...CT and MRI found 1.5 cm spot on body/neck of pancreas
    Followed up with EUS No mets/contained
    3/18 started 4 cycles of Gem/Abrax
    5/18 CT scan showed tumor shrinkage .97cm
    7/18 Pre surgery CT scan shows slight tumor growth (1.2cm) could be necrosis.
    8/3/18 distal pancreatomy/splenectomy-open procedure. No mets, 1 lymph node involvement.(distant) Staged 2B
    9/18 CA19 33 NORMAL
    10/10/18 Starting 3 mos Folfirinox adjuvant therapy.
    5/19 CT scan shows enlarged lymph node at surgical site. EUS biopsy determines cancer. Local and contained.
    6/19 Begin radiation. View Ray MRI 5 day regimen.
    8/19 CA19-9 down! no signs of lymph node!!!
    10/2 3 weeks of abdominal/right side pain. CT scan shows small (1mm) soft tissue nodule suspect for Peritoneal Mestastasis. CA 19- way up (1010)

  6. #6
    Experienced User Dand's Avatar
    Join Date
    Jul 2016
    Posts
    98
    Read my wife signature... she has been on PARP inhibitor similar to olaparib for about 3 years... good luck.
    BRCA2 Positive
    7/26/16-CT Scan with Liver Biopsy diagnosis Stage IV Pancreatic Cancer + metastatic of liver.
    8/2/16-Clinical Trial Cisplatin/Gemcitabine + Veliparib
    8/15/16- CA 19-9=37,750 U/mL/CEA 126.5 ng/mL
    9/05/16- CA 19-9=19,778 U/mL/CEA 74.9 ng/mL
    9/21/16- CT Scan -13.10% down from Bl (SD)
    9/26/16- CA 19-9=24,528 U/mL/CEA 61.3 ng/mL
    10/17/16- CA 19-9=24,792 U/mL/CEA 42.9 ng/mL
    11/2/16-CT Scan -22.30% down from Bl
    11/07/16- CA 19-9=24,895 U/mL/CEA 30.2 ng/mL
    12/09/16- IR VA Power Port
    12/14/16-CT Scan -26.20% down SD)
    4/3/17- CT Scan -41.50% down (SD) (PR)
    5/24/17- CA 19-9=1,934 U/mL/CEA 10 ng/mL
    6/5/17-CT Scan -50% down (PR)
    6/19/17- Stage II Trial Mono Veliparib
    7/17/17- CA 19-9=1,336 U/mL/CEA 9.1 ng/mL
    8/6/17-CT Scan -65% down (PR) no new sites
    11/20/17- CA 19-9=380 U/mL/CEA 7.6 ng/mL
    1/1/18- CA 19-9=304
    7/13/18-To Present CT Scan -80% down (SD PR)
    7/15/19 CA 19-9=105 U/mL/CEA 6.8 ng/mL

  7. #7
    Senior User
    Join Date
    Mar 2018
    Posts
    157
    can you only get PARP inhibitor thru a trial? Has she been taking that alone or in combo w/any other treatment? THanks
    +++++++++++++++++++++++++++++
    53 yrs old
    3/8/18 went to ER w/what i thought to be gall bladder issues...CT and MRI found 1.5 cm spot on body/neck of pancreas
    Followed up with EUS No mets/contained
    3/18 started 4 cycles of Gem/Abrax
    5/18 CT scan showed tumor shrinkage .97cm
    7/18 Pre surgery CT scan shows slight tumor growth (1.2cm) could be necrosis.
    8/3/18 distal pancreatomy/splenectomy-open procedure. No mets, 1 lymph node involvement.(distant) Staged 2B
    9/18 CA19 33 NORMAL
    10/10/18 Starting 3 mos Folfirinox adjuvant therapy.
    5/19 CT scan shows enlarged lymph node at surgical site. EUS biopsy determines cancer. Local and contained.
    6/19 Begin radiation. View Ray MRI 5 day regimen.
    8/19 CA19-9 down! no signs of lymph node!!!
    10/2 3 weeks of abdominal/right side pain. CT scan shows small (1mm) soft tissue nodule suspect for Peritoneal Mestastasis. CA 19- way up (1010)

 

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