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Thread: Update on my mom

  1. #1
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    Update on my mom

    Hi all,

    I hope everyone in Houston is holding up amid all the hurricanes coming their way. I can't imagine how it is like on the ground over there.

    I just thought I'd give a quick update on my mom. Its been 3 years 3 months since she was diagnosed (woohoo!) and so far her condition has remained stable. All along she's had 2 lung mets, and those have always remained stable in size and no new mets popping up.

    Well (there's always a caveat to good news right?) her last scan showed that one of her mets have increased from 6mm to 9mm. That sounds to me like quite a significant increase except that her CA marker is still around her usual baseline and my mom's CA marker is usually very indicative of disease progression.

    My question to the super knowledgeable folks over here - have you guys ever experienced an increase in lung mets but not attributable to disease progression? Sounds like an oxymoron to me but we're just trying to stay positive. The doc says to wait and see and if it continues to grow, he suggests radiation.
    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', afraid I don't have an answer to your question but I was looking at the timeline and wondered what happened after April 2015. Did she stay on folfirinox? Move to something else?
    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

  3. #3
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    Hello! Sorry I haven't expanded on my signature because I've busted the word limit. So Folfirinox managed to work for my mom and has driven down her CA numbers to 110-130 which I've discovered is her new baseline (just like her new numbers post whipple). But neuropathy became really bad for her and so we switched her now to folfox (or is it folfiri, I really cannot remember which is which) as maintenance chemo and to help her out with the neuropathy problem. And that has been her current regime and she's been stable for around 7-8 months on that with no increase in number and size of mets.

    Well except for now that is.

  4. #4
    SO amazing that she has done so well. Sounds like she is an outlier. I have confidence that she'll be OK. I know lung mets are slow growing and new treatments are being researched all the time.
    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

  5. #5
    Moderator Top User ddessert's Avatar
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    Interesting. I guess that rise in CA19-9 in April was from FOLFIRINOX killing a bunch of cancer cells (a good thing) instead of it not working.

    Has she talked to a surgeon about the possibility of removing those 2 lung mets? 7-8 months of stability with no new mets would seem to meet the eiligibilty criteria for some surgeons.

    But no, I don't recall anyone having lung spot growth like this that was not a recurrence (sorry). This was a site that was previously confirmed on a PET scan, wasn't 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 - Radiation+Xeloda, 25 days in 5 weeks
    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-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  6. #6
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    Hi ddessert, yes you are right, unfortunately we did previously confirm those spots in a PET scan years back. Folfirinox has managed to hold off the lung mets' growth for almost 3 years now but lately one met has just grown bigger from 6mm to 9mm.

    The doc never suggested surgery to us as an option though. We were always under the impression that once the cancer had metastasized (hm did I get that spelt right), surgery is never an option. He did suggest radiation as an option though. Has that been done by anyone with success?

  7. #7
    I had surgery on my liver mets and was told that if there are three or less lung mets surgery could be an option, depending on location.
    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

  8. #8
    Moderator Top User ddessert's Avatar
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    Over the last year or so, surgeons at the major institutions have been considering resections in patients that have shown long term stability and no new mets. It seems to be a matter of whether they're confident enough to believe they can "get it all".
    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 - Radiation+Xeloda, 25 days in 5 weeks
    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-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  9. #9
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    More on lung mets...

    Quote Originally Posted by ddessert View Post
    Over the last year or so, surgeons at the major institutions have been considering resections in patients that have shown long term stability and no new mets. It seems to be a matter of whether they're confident enough to believe they can "get it all".
    Guys I'm on the road, but just had a nearly 2 hour visit with a lung radiological oncologist. David is right, some places are just beginning to consider surgery or other local treatment with lung mets as it can increase survival although not cure. It has helped lung mets patients (not pdac) live longer and though not proven the same is true in pdac, some may consider it on patients in part depending on their risk tolerance.
    9/25/16 - Distal pancreatonomy to remove growing "cyst" on tail of pancreas
    9/30/16 - Path confirms PDAC, 0/16 lymph nodes, clear margins, categorized 2A
    11/06 - start Chemo - Gemcitabine/Xeloda
    5/15/17 - Scan show growth in previously unidentified lung nodules. 1 in each lung
    5/30/17- Lung biopsy confirms PDAC in lungs
    7/17 - awaiting to be placed in immunotherapy trial at MSKCC
    7/17 - began Clinical Trial of KO-947, an ERK inhibitor
    9/19/17 Taken off trial, not doing anything
    9/21/17 considering FOLFIRINOX followed by some local treatment for lungs. CA-19 21
    9/21/17 also considering clinical trial at NIH

 

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