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Thread: Dad is Choosing Hospice

  1. #1
    Super Moderator Top User ddessert's Avatar
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    Dad is Choosing Hospice

    Wow, that seems very quick, but dad has chosen to enter hospice.

    Dad (82 yo) has had a rough time from diagnosis, unblocked a ureter, first chemo treatment, unblocking a bile duct, 2nd Treatment, and now this decision to enter hospice. In the process, he has lost a lot of weight, sleeps poorly, and has become more mentally confused. We also feel that his doctors have not been true advocates for him as weve had to fight to get him every single procedure or treatment.

    Our entire family has been behind him 100% to get him to treatment and were backing him on this decision as well. I hold out a little hope that the two treatments hes had will take hold, the chemo will clear from his system, and he will improve somewhat in the near term. But in the meantime, we will be making sure that he has the right hospice care for him and that the rest of his days are as stress-free as possible.

    We will also be turning our attentions to my mother to be sure that she is set. As a couple from the 1950s, dad has taken care of most things and my mom may not be prepared for the finances, home repair, taxes, living alone, etc.
    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. #2
    David, this must feel hard for you, in some ways, since you have learned so much about available treatments. And yet it seems that he knows what he wants, and it's great that you all support him. I hope he does benefit from the two treatments he's had, and that he stays positive and comfortable.
    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
    Administrator Top User lisa1962's Avatar
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    David,

    My sincere thoughts of comfort and strength to your entire family. Without a doubt, must have been a difficult decision for your Dad but with the support of the family, he made the choice that felt right for him.

    I fully understand how complex as this is between your Dad and your Mom as it similar with my parents. Heartbreaking to lose a spouse especially after so many years of marriage.

    I will keep you all in my thoughts and prayers David and hope for peace and comfort for your Dad in the time ahead.

    Lisa

  4. #4
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    Thinking of you, your dad and your family!

  5. #5
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    David, I hope you and your family have some good moments with your dad thanks to the treatments you were able to wrestle out of the staff there. What an honorable and loving family to follow his wishes. My best thoughts and prayers are with you.

  6. #6
    Moderator Senior User BrigitteM's Avatar
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    David,

    I'm very sorry for your father, you and your family. I cannot imagine what it must have been to discover you needed to fight so much the medical community to get the appropriate care for your Dad. It makes me so angry that not every patient isn't getting the care they should have, even in well-known hospitals.

    I wish you the best quality time with your Dad and I send you all my support. Warmly, 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

  7. #7
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    I'm so saddened by this news. My heart goes to you, your dad and your family.
    Oct 2017 - Mom's annual checkup found elevated CA19-9 (280 kU/L)
    Nov 2017 - Diagnosed. Pancreatic Adenocarcinoma on body/tail of pancreas, ~3cm mass
    Dec 2017 - Distal pancreatectomy, 3.5*3*2 mass removed, 2/17 lymph nodes.
    Jan 2018 - CA19-9 dropped to 30 kU/L 4 weeks after surgery.
    Feb 2018 - 3 rounds of S1
    June 2018 - CA 19-9 from 50 to 170 KU/L. CT + PET confirmed recurrence at remainder of pancreas + peritoneal mets.
    July 2018 - Started Gem/Abraxane
    Sep 2018 - Peritoneal mets disappeared on CT. CA 19-9 dropped to 35.
    Nov 2018 - Finished 4th round of Gem/Abraxane. Clear CT. CA19-9 dropped to 22.

  8. #8
    Super Moderator Top User ddessert's Avatar
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    The nurse tells us it is a matter of days now for my dad. All the immediate family is here now.
    He is still fighting and trying to figure out how to beat this, but his body betrays him.
    Thankfully no pain. He is sleeping a lot.
    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

  9. #9
    Administrator Top User lisa1962's Avatar
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    My thoughts and prayers go out to all of you David.

  10. #10
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    David,
    My thoughts and prayers are with you and your family. I can't imagine how difficult this is for your Dad and family. I'm sure having his family with him means for world to him...you are an amazing and loving son.

 

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