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

  1. #11
    Top User sdrutledge's Avatar
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    thank you Ash..sometimes i can't breathe, it hurts, and other times I wonder why I haven't cried today, but i know i may feel this way all my life. when he passed he had a fleeting smile. i hope he was seeing the face of God...and his late mother. you too are grieving, nearly a year...sending you strength..to lose a child is the cruelest torture...
    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. #12
    Super Moderator Top User po18guy's Avatar
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    In the Catholic faith, offering prayer for him, visiting the cemetery, or offering a mass is a spiritual work of mercy. There are benefits all around. All are positive activities that help you through this painful time and are believed to be of benefit to him, as well. From the Christian perspective, what we call "death" is merely a transition, and Jesus Himself called it "entering into life", which I find to be very comforting.
    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) 26% blast cells of 20q Deletion 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.
    08/17 Bone marrow aspiration/biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and a myeloid malignancy lend a certain symmetry to the journey.

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

  3. #13
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    I believe it to be a transition also and it does indeed comfort me to believe that I will see my son and others that have passed when I cross over. Thank you po for so eloquently sharing your knowledge and faith. It is a comfort to me. Prayers for all here on their journeys.

    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

  4. #14
    Top User Carol Wal's Avatar
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    We are Catholic also must admit I'm not the greatest but my faith and belief are strong.....Glad you had a mass said for Carlos hope the day went well....I love that you brought the same flower as you had in your wedding......How wonderful ♥♥

    Prayers & Blessings, carol
    Oct 9,2012 Hubby's ( 65 ) ERCP, Stent put in also told might be cancer
    Oct 23,2012 ( ERCP ) diagnosed. PC on head of pancreas.
    Nov. 5,2012 Whipple at Loma Linda Hosp.... could not be finished due to heart issues
    ( 4 1/2 hours into surgery )told it's also attached to Portal Vein, now only Chemo & Radiation

    1-30-13 Hubby started on his radiation and Pill Chemo ( Xeloda 3200 mg per day ) for six weeks
    3-12-13 ( Bowel blockage) in Hospital Fluid being drained
    4-18-13 New Stent put in metal with mesh
    4-19-13 2nd round of ( Xeloda ) 2 weeks on 1 week off till ? 4000 mg per day for 6 months ( changed to 3000 )
    6-12-13 Large Hernia at surgery site/won't be repaired due to his heart condition also losing toenails ( Xeloda )
    8-9-13 Taken off all Chemo just Living Life now and Keeping him Pain Free "In God's Hands"
    REMISSION NOW PRAYING IT WILL LAST 1-10-14
    3-12-15 Cancer is Back..Now in Hospice 4-10-15
    Passed on to Heaven 4-30-2015 Till you Hold me again...XOXO

  5. #15
    Top User sdrutledge's Avatar
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    This is where Carlos obituary is listed. he is on my mind even more this weekend, Easter and my birthday http://www.cardinalfuneralhomes.com/...px?obid=203633
    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.

 

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