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Thread: Exploring hospice

  1. #1
    Senior User
    Join Date
    Jun 2012

    Exploring hospice

    So the decision has essentially been made, I am done with chemo. Being sick from the side effects for two weeks and then immediately going into another round of chemo is just not worth it given that the prognoses for progression of the disease is the same, with or without treatment. I will have a scan next week and have one more meeting with the oncologist to confirm that this is the right choice, but absent some miraculous improvement, I do not see this decision changing.

    We are meeting tomorrow with a representative from the most highly rated local hospice provider. By a happy coincidence, she is also a deacon from our church who has us on her list of parishioners for whom she is responsible to provide care.

    Many people have a misinformed opinion about hospice, believing that it is only for those who are actively dying (is that an oxymoron?). We have been encouraged to get them involved sooner rather than later as they also provide palliative care as the disease takes a greater toll on my body. It also allows us to establish a relationship with them so that we don't bring them into the picture while in crisis mode at the very end. Going on hospice is not waving the white flag and saying I am ready to stop suffering the slings and arrows of outrageous fortune and that I am ready to shuffle off this mortal coil within the next few weeks and my quietus make with the bare bodkin of hospice. It is a recognition of the reality of the disease and that with help we can make the transition to each of the next steps easier.

    I do not fear death, nor the process of dying. For I am convinced that nothing, not life, not death, nor powers, nor principalities, can separate us from the love of God which is in Christ. So while I live, I live to the Lord, and when I die, I die to the Lord, so whether I live or die, it is always in the care of the Lord. All the same, don't want to die uneasy, just let me go naturally. I know that not all of you share my faith, and this is not intended to push my faith on to you, but it is an honest statement of why am I am where I am.
    Diagnosed June 20, 2012 with adenocarcinoma of the pancreas.
    Surgery on July 19, 2012, distal pancreatectomy with removal of a portion of the stomach and colon adhering to the pancreas, splenectomy.
    Pathology report July 26, 2012, clear margins all around
    Stage 2 (T3N0) in July, changed to Stage 3 Oct. 10.
    Started Gemzar Sept. 17, 2012
    6 month scan clean, NED
    Completed chemo end of March.
    July 5, scan shows pseudocyst between what is left of my stomach and pancreas.
    July 12, two stents put in to drain pseudocyst, pain on left side reduced.
    Dec. 6, results of last scan, 10 mm and 6mm mets to liver, 3 small mets to lungs.
    March 25, folfirinox is working but bad reaction to oxaliplatin. Giving it one more try.
    Switched to folfiri, minor reaction.
    5 rounds of Xeloda.
    Done with Xeloda, starting gem/abrax in 3 weeks.
    Started hospice Feb. 11

  2. #2
    I share your faith and it provides me comfort with the transition from here to there.

    8-24-12 ER visit nausea and jaundice 8-25-12 pancreas, biopsy positive 9-19-12 Whipple procedure spots on liver, surgery stopped10-1-12 liver spots negative 10-10-12 New Whipple surgery pancreas tumor removed12-3-12 Chemo for 6 months. 7-3-13 Chemo complete 10-25-13 CT NED 12-3-13 CA19-9 went from 19 to 253 7-2014 PET positive for tumor at original whipple location right kidney blockage Right Kidney stent to bladder 7-7-14 start new chemo Folfirinox 10-22-14 PET shows tumor half the size
    12-16-14 Last of 12 chemo rounds 12-23-14 PET results NED 7-14-15 recurrence started back on Folfirinox 10-6-15 PET results NED CA19-9 in normal range last chemo 1-12-16 CT results NED CA19-9 in normal range CA19-9 4/25/16 CA19-9 rise to 514 restart Chemo Gemzar/Abraxane CT scan 4/29/16 Tumor return to original bed new spots on liver lung and stomach. 08/25/16 CA 19-9 865 09/08/16 CA 19-9 684 10-01-16 CA 19-9 464
    Fighting one day at a time. My faith is my guide

  3. #3
    Senior User
    Join Date
    Aug 2005
    Prayers to you and your family..

  4. #4
    Regular User
    Join Date
    Sep 2014
    Prayers for your family. I know your faith is comforting for them and others. I saw that kind of faith in action as my wife went through hospice. She touched many lives as I know you will also.
    February 2014: Wife Diagnosed
    March 2014: Biopsies reveal mets to kidney, liver, and lungs
    March 2014: start abraxine and gimzar every two weeks
    July 2014: scans indicate up to 20% shrinkage of tumors
    August 2014: severe neuropathy in hands in feet delay chemo a couple of weeks
    September 2014: back to chemo
    Scans and ca-19 indicate that gem/abrax is no longer working
    October 9, 2014: begin Folfirinox
    October 15, 2014 neutrapenic and dehydrated, spent week in hosp.
    Nov 6: another Folfirinox round
    Nov 24: very sick and weak from treatments
    Dec 8: back in hospital
    Dec 19: discharged home to hospice care. Doctors have run out of options
    Dec 25, 3:00am: My love for 33 years went to be with her (and our) savior Jesus Christ.

  5. #5
    My thoughts are with you Ed! HUGS
    Spouse/Caregiver of 56 yr old male
    Diagnosed Primary CNS Lymphoma 2/2011
    HDMTX Chemo- 8 cycles
    HDMTX Maintenance Chemo- 11 cycles
    Complications: clots, kidney issues, slow clearance of
    chemo, dermatitis
    11/2013 Recurring clots in lungs/legs
    Scan 12-27-13 all clear
    Scan 3-13 all clear
    Next scan in October, done and all clear!
    Went early for scanxiety in Aug 2014, all clear!
    Scan Feb 2015, all clear!

  6. #6
    I know this was a very hard decision. I am sorry.
    I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing.

    Only I will remain.

  7. #7
    Ed, it sounds like a good plan to get hospice involved early for so many reasons.. I'm so glad that you have your faith to comfort you. Sending you my best wishes.
    Oct 12: Hubbie 57 stage 4 PC 4.7 cm tumor tail of pancreas mets to liver and peritoneum.
    Folfirinox 4 rounds - tumour shrunk to 2.7 cm
    7 rounds folfox severe neuropathy changed to folfiri.
    CT no evidence original tumour.
    Sep 13 chemo changed to gemzar /abraxane.
    Jan 14chemo break for 12 weeks- peripheral neuropathy in hands.
    Mar 14chemo break 8 more weeks.neuropathy no better. CT =enlarged lymph nodes chest area.
    May 14 ct showed 3cm tumor invading spleen. Folfiri recommended
    April 15 Folfiri not working. Tumour doubled in size since Jan! changed to gemzar/ abraxane
    July 15 more disease progression liver tumours increasing changed to folfox
    Sep 30th more progression lung, diaphragm and lymph nodes
    Oct 2015 treatment stopped. In gods hands now.
    Nov 2015 started home hospice
    Dec 6 chest infection
    Dec 18 admitted to hospice for pain control
    Dec 22 I brought my darling home where he wanted to be.
    Dec 26 Passed away peacefully. Forever in my heart. xx

  8. #8
    Ed I am so sorry it is coming to this. I think your decision is a very solid one for you and your family. Joe and I have talked this over several times. He is not to that point yet but we both feel when the time comes it is best to get hospice involved as soon as possible to make the transition easier for everyone. One of our, well Joe's, in home health nurses went to working hospice and she gave us the low down on how it all goes. Starting in early will give some relief to your family as the palliative care lets your wife be your wife and not caregiver. Takes some of the burden of medical decisions off of her and lets the nurse take care of it. She said it was not much different then when she is coming to the house to check Joe after his surgery. And it establishes a relationship.

    I do share your faith. Always praying for all of us here. Patients and family.

    73 Year old Husband has/had:
    1-23-13 Mass on pancreas. Stent placed. Adenocarcinoma diag.
    Jan 31,2013. Stage three due to non operable.
    2-18-13 Port placed.
    2-19-13-First Folfox rounds reduced after third and tenth through 7-26-13.
    8-2-13 CT scan Mass strands have moved away from SMV.
    8-14-13 Whipple. Pathology clean margins no lymph involvement. Hospitalized 24 days.
    11-5-13 Still too weak after surgery and pneumonia for chemo
    12-10-13-CT scan clear NED Blood work Ca 19-9 35 No chemo or radiation at this time.WT184.6
    2-26-14 Next CT scan and Blood work Still NED Doing great so far.
    6-3-14 CT Scan still NED Ca 19-9 31.5
    8-26-14-CT Scan Ca 19-9 31.4 and Still NED
    12-2-14- CT Scan Ca19-9 30.1 NED with Concern area on lung Check next scan. WT211.7
    7-7-15 Biopsy on lung nodule positive for re-occurrence of PC. Ca 19-9 47. Xeolda
    4-26-16 Tumors in lungs=3 growing started Gemcitibine. Ca 19-9 339.

  9. #9
    Senior User
    Join Date
    Apr 2014
    Ed, it is good that you are piloting your own destiny. I hope that you are comfortable, and I am wishing you many high quality moments. Hugs.
    Fall 2013: cyst found on tail of pancreas
    Dec 2013: puncture biopsy - diagnosis mucinous cystadenoma
    Jan 2014: distal pancreatectomy by laparoscopy - spleen preserved
    Feb 2014: path report: 3mm adenocarcenoma inside 9cm cyst, T1N0MXR0
    Apr 2014: Started Gemzar (6 month protocol)
    Sept 2014: Final chemo. Scan NED, markers ca19-9=8.1, cea=0.7
    Jan 2015 -Jun 2016: NED
    Jan 2017: 14cm cyst on ovary, ca 19-9=138, cea=0.6, ca 125=48
    Feb 2017: Hysterectomy, ovariectomie, omentectomy - mucinous adenocarcinoma cyst with spread to omentum. Ovaries, uterus, tubes clean
    Mar 2017: start gemzar/xeloda protocol, ca19-9 =370, cea and ca125 normal
    June 2017: scan shows 2 spots on liver and maybe 2 (millimetric) on lung. ca19-9=197
    Sept 2017: ca19-9=14 , spots on liver stable or decreased, but spots on lung are a bit bigger.
    Dec 2017: ca19-9=15, millimetric growth of 2 lung mets, possible millimetric spots on liver. GEMOX starting Jan 2018

  10. #10
    Top User
    Join Date
    Jan 2013
    Dear Ed, so happy the decision is made and that you are happy with it. I, too, believe that hospice really helped our family deal with the issues of medication and letting the mom be the mom and not the nurse. She was absolutely the very best and I considered her to be my angel and so did my son. May your experience and their expertise give you many more good days and memories. Prayers continue for all here as we travel life's journey.

    Caregiver to son, 32 , 5/18/2011 Stage IV
    Sigmoid colectomy , liver biopsy 5/18/2011
    6cm sigmoid tumor, low grade (well-to-mod. differentiated)
    6 of 33 lymph nodes +
    FOLFOX /Avastin 6/2011-8/2011
    Rt hepatectomy on 9/20/2011---70%
    FOLFOX /Avastin 4 cycles 1/31 stopped-low platelets
    3/5 CT clear
    4/ PET scan showed peritoneal mets
    4/24 splenic embolization for low platelets
    FOLFIRI/ Avastin 5/12-8/12
    Consult for HIPEC 8/12 denied---tumors too many, possibly in ureter.
    5FU/ Avastin 8/2012-2/2013
    12/5/12 scan tumors stable
    12/12 aranespt
    3/5 tumor progression in abdomin
    Restart FOLFIRI/ Avastin with lower dose of Irinotecan 3/11-3/25
    nuelasta shots
    ER - bowel obstruction 4/4
    Port removed 4/12
    Port replaced 5/9
    ER 30 hrs
    Erbitux in, Irinotecan lowered 5/20 & 6/17
    9/17scan indicates stable
    9/18-27 & 10/7-11 small bowel obst.
    Erbitux & Irinotecan 11/5, 12/2
    Bowel obst. 12/31
    1/8 urether stent
    1/17 Hospice
    3/27 started his heavenly journey


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