It is time for Hospice

I thought I would write an update on where we are with dad's treatment. Last I wrote back in May, he was having some difficulties while undergoing whole brain radiation for mets to the brain that had come back after his craniotomy in December. While we have had some good days since he came from from the hospital (he came down with pneumonia 3 weeks into a 4 week rad schedule, but he finished all 20 wbrt treatments on schedule anyway!), things have mostly just gone downhill. We hoped it was just the effects of the radiation, all the fatigue and weakness and lack of appetite, etc. Even though he had to walk with a walker, his vitals were always pretty strong, so the doctor started him back on Xeloda and Herceptin for the primary esophageal tumor in June, and weaned him off the decadron, but his body just couldn't handle it. After 2 weeks, he was barely eating, sleeping all the time, and getting weaker in his legs. I made the decision last week that he needed to get fluids, which his doctor agreed to, and we spent 3 out of the 5 days at the cancer center getting fluid infusions, plus his onc put him back on 4mg of Decadron a day. We also got the results of his scans, 7 weeks out from the wbrt. No progression of disease, but nothing shrunk either. No change. And no change in the size of the tumor in the esophagus, either. It was last Friday that his doctor decided that more chemo would just be toxic to dad at this point, and that it might be time for hospice. It took some gentle convincing, but he agreed to it today. At our appointment today, the doctor said he thinks that dad has developed leptomeningeal metastases, which means the cancer has traveled to the lining of the brain and possibly the spinal fluid, which would explain why his symptoms seem more severe than the scan would suggest, but he does not want to put dad through the ordeal of an MRI or spinal tap just to find out. Our goal now is to keep him comfortable and safe. He has outlived his original prognosis of 6-12 months now, at almost 14 months, and he has put up a good fight. I think it really is time to lay down the sword, and he thinks so, too.


  • paul61
    paul61 Member Posts: 1,391 Member
    Sad to hear - but the right decision
    I am sorry to hear that things are not progressing well for your Dad. I know hospice is a difficult decision because it involves accepting that some things are inevitable. I think it is the right decision to evaluate the quality of one's life in addition to the quantity.

    May your Dad be free of pain, at peace, and surrounded by the love and support of his family.

    Best Regards,

    Paul Adams
    Grand Blanc, Michigan

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • TerryV
    TerryV Member Posts: 887
    I am SO SORRY!
    I lost my Nick to EC with mets the brain and leptomenengial disease. How awful for you all.

    I'm sorry for what your father (and your family) is going through. EC is a horrid disease and so awfully aggressive.

    I hope hospice keeps him comfortable and that you are able to enjoy some quality time together.

    PROUD wife to Nick, age 49
    dx T3N1M0 05/19/11
    26 rads & 2 weeks inpatient Cisplatin & 5FU
    THE 09/08/11
    NED until 05/11/12
    dx mets to brain (3 tumors and a mist of smaller tumors) and Leptomenengial disease
    15 WBR
    lost to FEC 06/19/12