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Thread: may you be free of pain now my dearest Carlos

  1. #1
    Top User sdrutledge's Avatar
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    may you be free of pain now my dearest Carlos

    For my wonderful husband and partner for over 20 years, Carlos Lugo Aguilar. born June 26, 1962, passed on November 27, 2014. Pancreatic Cancer is a vicious disease, and Carlos you gave it everything you had. I hope you are bathed in God's light. For you were the most charitable, forgiving sweet man I ever knew. I was blessed and I know I will never meet anyone like you again. I hope you can watch over me.
    Love Susan
    October 21012: Husband age 50 diagnosed with Stage IV pan cancer with mets to liver. 12 treatments of Folfirinox. Chemo break June 2013 - March 2014. Back on Folfirinox for 4 treatments, then cancelled. CT Scan, ultrasound, biopsy only confirm cancer is back but no treatment recommended. Another scan in a week. Radiation:5 treatments in 4 days, stereodatic radiation (aka cyberknife) late July. No effect. September 2 weeks in hosp with blood infection. Oct: 6 chemo (Gem) No effect. November - at home, me at home full time. Slow decline til Nov 20 when admitted to palliative care. Body and mind ravaged by disease, toxins, my beautiful Carlos passed away on Thurs Nov.27 . May he rest in God's gentle hands in eternal comfort.

  2. #2
    Top User sdrutledge's Avatar
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    Facing my first Valentines without you Carlos ...i'll read all our cards over the years and cry..tears of loss and tears of gratitude for having your love in my life....you'll always be my valentine and no one will ever take your place in my heart
    October 21012: Husband age 50 diagnosed with Stage IV pan cancer with mets to liver. 12 treatments of Folfirinox. Chemo break June 2013 - March 2014. Back on Folfirinox for 4 treatments, then cancelled. CT Scan, ultrasound, biopsy only confirm cancer is back but no treatment recommended. Another scan in a week. Radiation:5 treatments in 4 days, stereodatic radiation (aka cyberknife) late July. No effect. September 2 weeks in hosp with blood infection. Oct: 6 chemo (Gem) No effect. November - at home, me at home full time. Slow decline til Nov 20 when admitted to palliative care. Body and mind ravaged by disease, toxins, my beautiful Carlos passed away on Thurs Nov.27 . May he rest in God's gentle hands in eternal comfort.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Cherish those memories and the richness that he brought into your life. How much sadder would life be had you two never met.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.

    Believing in the redemptive value of suffering makes all the difference.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    To elaborate just a bit, it is comforting to recall just how rich life was for all of the time that you two shared together. The joys and the pains, but imagine how empty life would seem now had none of this ever occurred. We often focus on the pain and emptiness of a loss. Rather, I like to reflect on the amazing gains that Carlos brought to your life - something which may never be taken away. All of this is a part of you now and I hope and pray that it helps to sustain you daily.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.

    Believing in the redemptive value of suffering makes all the difference.

  5. #5
    Top User sdrutledge's Avatar
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    I you are so right. I tend to dwell on the void. I love looking at old photos of our travels I would never have the spirit of adventure without him ...we took care of each other , with work demands or family. It is so hard all on my own but hoping he watches over me. In going to light a candle today at church. Thank you for you kindness. You might like this, St Michaels Hospital has a ceremony three months after a patient passes, prayers a dedication and e bereaved can place a flower at the fountain there. I'm touched and actually looking forward to it. Bless you
    October 21012: Husband age 50 diagnosed with Stage IV pan cancer with mets to liver. 12 treatments of Folfirinox. Chemo break June 2013 - March 2014. Back on Folfirinox for 4 treatments, then cancelled. CT Scan, ultrasound, biopsy only confirm cancer is back but no treatment recommended. Another scan in a week. Radiation:5 treatments in 4 days, stereodatic radiation (aka cyberknife) late July. No effect. September 2 weeks in hosp with blood infection. Oct: 6 chemo (Gem) No effect. November - at home, me at home full time. Slow decline til Nov 20 when admitted to palliative care. Body and mind ravaged by disease, toxins, my beautiful Carlos passed away on Thurs Nov.27 . May he rest in God's gentle hands in eternal comfort.

  6. #6
    Top User weylandburns's Avatar
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    My prayers go with you when you place Carlos' flower.
    Weyland

    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

  7. #7
    Top User sdrutledge's Avatar
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    Quote Originally Posted by weylandburns View Post
    My prayers go with you when you place Carlos' flower.
    It is today! how incredible that you posted your note today. Thank you. I also plan to visit the ward he stayed in...I think it's another part of closure. I have a lily...like the ones we had on our wedding day.
    bless you
    October 21012: Husband age 50 diagnosed with Stage IV pan cancer with mets to liver. 12 treatments of Folfirinox. Chemo break June 2013 - March 2014. Back on Folfirinox for 4 treatments, then cancelled. CT Scan, ultrasound, biopsy only confirm cancer is back but no treatment recommended. Another scan in a week. Radiation:5 treatments in 4 days, stereodatic radiation (aka cyberknife) late July. No effect. September 2 weeks in hosp with blood infection. Oct: 6 chemo (Gem) No effect. November - at home, me at home full time. Slow decline til Nov 20 when admitted to palliative care. Body and mind ravaged by disease, toxins, my beautiful Carlos passed away on Thurs Nov.27 . May he rest in God's gentle hands in eternal comfort.

  8. #8
    Top User weylandburns's Avatar
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    That is incredible! I had no idea when it would be but it makes me happy to have been timely with my post.
    Weyland

    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

  9. #9
    Top User sdrutledge's Avatar
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    Today nearly four moths I am having a Mass said at nearby church we went t to from time to time. Being Spanish he was Catholic in his prayers. I'm really Protestant but very lapsed. I want to honour him and pray that God will always keep him out of pain.
    October 21012: Husband age 50 diagnosed with Stage IV pan cancer with mets to liver. 12 treatments of Folfirinox. Chemo break June 2013 - March 2014. Back on Folfirinox for 4 treatments, then cancelled. CT Scan, ultrasound, biopsy only confirm cancer is back but no treatment recommended. Another scan in a week. Radiation:5 treatments in 4 days, stereodatic radiation (aka cyberknife) late July. No effect. September 2 weeks in hosp with blood infection. Oct: 6 chemo (Gem) No effect. November - at home, me at home full time. Slow decline til Nov 20 when admitted to palliative care. Body and mind ravaged by disease, toxins, my beautiful Carlos passed away on Thurs Nov.27 . May he rest in God's gentle hands in eternal comfort.

  10. #10
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    sdrutledge, you are honoring him with a mass since that is part of the Catholic tradition---to pray for the deceased. My mother prays daily for my grandmother and my dad. Her mom died in 1965 and my dad in 2011. I, too, pray for my son, especially in the beginning of my grief journey. I pray you are doing better and learning to live without your wonderful mate.

    Amanda
    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%
    2012
    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
    2013
    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
    2014
    1/8 urether stent
    1/17 Hospice
    3/27 started his heavenly journey

 

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