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Thread: Dad's Treatment Starts Tomorrow

  1. #11
    Super Moderator Top User ddessert's Avatar
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    Thanks.
    My dad’s oncologist seems to be very conservative and won’t step outside what he considers standard treatment territory. I’m hopeful that my father has the outstanding response I think he’ll get and teach this oncologist a lesson that the standard is not always the best way to go.

    “Accept the standard treatment and expect the standard result”

    It’s a hard lesson to learn because you are rejecting what is deemed “best” by professionals for the median patient. But there is only one median patient and it is unlikely that your are it.

    I’m interested in those outliers that survived a long time...
    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

  2. #12
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    I'm with you wanting to know the outliers. I have finally understood the good and bad of treatment at major centers. You get standard chemo or their clinical trials and that's it. Most oncologists at the centers are way too busy to personalize a treatment plan or investigate opportunities elsewhere. I wanted other options. I now see a private oncologist who will refer for outside treatment/trials where it looks best for me. I spoke with one of his patients who is over 11 years out - had stage 4 - for real. I like that he is not answerable to a hospital board - just his patients. Unfortunately it seems to be the case that private oncologists are becoming a rarity.

  3. #13
    Super Moderator Top User ddessert's Avatar
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    I think we're on the same page. While the major cancer centers are a huge step up from the local/regional ones, you are right that they can be limited in what they offer. Not all of them, but many.

    There are a handful of oncologists that seem to go out of their way for their patients. Dr. Eileen O'Reilly at MSKCC and Dr. Allison Ocean at Weill Cornell (and Let'sWinPC) both come to mind. But our medical system does not encourage personalized treatments or plans.

    You're the first one I've heard talking about a private oncologist. How did you find out about them?
    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

  4. #14
    Jamiepat can you tell us more about the Stage IV patient who is eleven years out?
    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.

  5. #15
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    David and Jackie, I found him by googling "oncologists" in the Seattle area, plus had a friend who sees him. Here is a link to his website. http://www.lifespringcancer.com/our-practice/our-team/ Look under "publications", then "research", then click on the first treatment and you will see a paper they presented at this years ASCO conference outlining a therapy used there. It looked pretty darn impressive although there are not the huge numbers of people going through as in the bigger centers.
    As for the 11 year out patient - she is for real, was stage 4 and is still alive. I asked about any special treatments - she said her grandkids were keeping her alive - so sweet. She did not have surgery, did have a short immune treatment I believe. He has other patients that have made it past the couple of year mark as well. The metronomic therapy is easier to tolerate and he changes chemo combinations to avoid developing resistance. I really feel that this guy WANTS to CURE people and I'm hoping to be on their next poster board. If I'm not that's o.k, at least I'm not stuck in a center that let me progress for 5 months without switching chemos (this was not SCCA - but another one). I'm starting to believe all that stuff about hospitals just wanting their 6% from treating with chemo. The private oncologists don't get that benefit. I wish we had a voice addressing treatment conventions and clinical trial conventions.
    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

 

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