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Thread: One haploidentical transplant experience (ongoing)

  1. #581
    Regular User
    Join Date
    Jan 2015
    Honolulu, Hi
    I've been on Prednisone 3 years - I keep trying to go down, but it hasn't worked so far.

    At my annual checkup, Dr. Popplewell suggested I try going down to 4.5mg every other day. I tried it, and about a month later, I got a new skin rash on hands. Went to see Derm and they said "Dyshydrotic Eczema". I assumed it was GVHD related, and bumped up steroids. Just now, during a little Googlefest, I found out that Dyshydrotic Eczema is a side effect of IVIG infusion - I had one a week before rash appeared. This is a common problem for me, is it GVHD? Or is it something else? I pretty much always default to - it's GVHD... but sometimes it's not...

    I feel for you PO. Don't like being on any amount of Pred.

    They say it can take 3 years or more for the body to adjust - maybe you'll eventually be able to go down. Or maybe they'll invent a cure for GVHD. Wouldn't that be nice?

    I'm not giving up hope that eventually I'll be able get off steroids. I hope you will be able to one day too.

    1/31/14 - Dx T cell lymphoma (ALCL ALK-neg CD30) 50+ nodes Stage IIIB
    4/15/2014 - 4 rounds of CHOP. PET scan clean but two new areas. 5th round of CHOP.
    5/15/2014 - New nodes in neck, fever returns, leave for City of Hope
    5/28/2014 - One round of ICE at City of Hope, admitted to hospital, high fever, nodes in lungs.
    6/15/2014 - 3 rounds of Brentuximab, prep for ALLO SCT.
    7/15/2014 - PET scan shows only one active area under port.
    8/7/2014 - ALLO SCT at City of Hope, brother 100% match
    10/7/2014 - Day 60 PET shows same node 1.5cm under port, everything else clean. Reduce immunosuppressants to get GVL effect.
    11/15/2014 - Day 100 PET shows same node is bigger, and there's a new one.
    11/18/2014 - Brentuximab again 5 rounds, return to Hawaii
    11/25/2014 - GVHD skin rash, back on steroids 30mg/day
    1/13/2014 - GVHD eyelids, back on steroids 30mg/day
    2/9/2015 - First clear PET NED
    2/9/2015 - Chronic GVHD, lips, skin, eyes - steroids 5mg/day
    9/31/2017 - Clear scan - NED

  2. #582
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Pacific NW, USA
    I have put the facility on notice that I am weary of the status quo. Shooting heroin would scarcely be more damaging than prednisone, and a lot more pleasurable. I am fully aware that many have exponentially worse GvHD than you or I do. I really, truly feel for them. All of this and we are never certain if the transplant was the correct option - particularly for those of us who were in full response at the time. Water under the bridge.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") 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 Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    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.
    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 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.
    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. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

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


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