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Thread: When and how to decide on Hospice

  1. #1
    Experienced User
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    When and how to decide on Hospice

    I was just wondering how you decide to go on Hospice. Does your oncologist ever bring the subject up? Or do they just always look for other options to treat you? At present the oncologist doesn't want to treat my husband because he is recovering from a fractured hip and is having issues with pleural effusion. He ordered the CT scan and said if he doesn't have to treat at this time he won't. I know a lot of people are told they have a certain amount of time left but no one has said anything like that to us except His cardiologist told us in March after he broke his hip that he has maybe 6 months to a year, but nothing from the oncologist. Should we ask what he thinks? This uncertainty has me crazy. I guess I need to ask more questions of the doctors.
    Judi
    9/16-68 year old husband diagnosed with Stage 3 unresectable pancreatic cancer
    9/16-12/16- Folfirinox 6 rounds of treatment
    12/16-CT scan, no signs of disease and normal tumor markers
    1/17-2/17- IMRT radiation 28 treatments with Xeloda
    3/17- CT scan, no signs of disease and normal tumor markers
    5/17- CT scan, no signs of disease
    7/17/17-Whipple
    7/31/17- Pathology report: "No residual tumor, complete response to treatment, grade 0. T0N0M0. NED
    8/17-CA 19-9 254
    11/14/17- CT scan mets to the liver-3
    11/17-Started Gemzar/Abraxane
    12/17-1/18-Hospitalized for pneumonia and bilateral pleural effusions, chest tubes placed. Needed 2 units of blood due to low hemoglobin
    2/18- Ca 19-9 went down from 4611 to 158
    3/18-CT scan, 2 liver lesions shrunk and one is gone
    3/11/18-fractured femoral neck
    3/15/18-hemiorthoplasty to repair left hip fracture
    6/21/18- acute multiple ischemic strokes
    7/18/18-suffering no more, passed away one year and one day after Whipple

  2. #2
    Experienced User
    Join Date
    Nov 2015
    Posts
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    I know what you mean. My husband diagnosed sept 2014 stage 4 was given less than a year. As a esult I quit my job for about one year, and he is still there. Just befo my husband's diagnosis his son was diagnosed with carinoid cancer, and was given years. He died january 2017. This is just affecting us more than it should. Who ever knows when......................

  3. #3
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Posts
    392
    Hello, Judi-

    I'm very sorry to hear that your husband has progressed to this stage, and I have to imagine that by asking the question, you make it more concrete--like an absolute.

    Although I don't have experience with such discussions, I would believe that the best way to get the understanding, is to ask your oncologist. Perhaps you could preface the question by acknowledging your husband's current physical state and the perceived progress of any treatments, and simply ask what options you might have. I'm certain that as an oncologist, you have to have difficult conversations with your patients at times.

    I wish you and your family peace through whatever course the answers take you.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

  4. #4
    Super Moderator Top User ddessert's Avatar
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    Oct 2013
    Posts
    2,268
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    7
    BobInBonita started seriously considering hospice when he’d exhausted all the best treatments and then a few. He was tired of the side effects and would have considered an immunotherapy clinical trial if one became available.

    He stopped treatment for a while and then decided to do some more. I believe his last one was nanoknife IRE on his lung spots. So his decision to halt treatment was not irreversible.

    Eventually he did opt for hospice and quality of remaining life.

    His lung mets were rather slow growing and he remained in hospice for quite some time. In the last few months, he wondered if he’d given up too soon. The last few months dragged on for him with a slow progression in pain and fatigue. In hospice, there was no easy way to get a new scan to see how much longer it might take. It was taking so long to die that he wondered if it was not the cancer killing him, but perhaps some other treatable side effect.

    I think at the beginning of home hospice care, he was in relatively good health and pleased to not be going through chemotherapy. He knew that it was not going to cure him and it was just a matter of time. The choice became how to spend that time.

    Of course everyone’s personal journey is different, but that is what he was thinking about. Others may die rather quickly after joining hospice.
    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-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

 

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