A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 59 of 59 FirstFirst ... 949575859
Results 581 to 582 of 582

Thread: One haploidentical transplant experience (ongoing)

  1. #581
    Regular User
    Join Date
    Jan 2015
    Location
    Honolulu, Hi
    Posts
    40
    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.


    Aloha,
    Alison
    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
    Location
    Pacific NW, USA
    Posts
    8,116
    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.

 

Similar Threads

  1. What symptoms did you or your loved-one experience?
    By EchoOfTheShell in forum Pancreatic Cancer Forum
    Replies: 9
    Last Post: 08-03-2012, 05:53 PM
  2. Replies: 1
    Last Post: 03-31-2012, 04:35 AM
  3. Any experience or advice about liver transplant?
    By Chit85 in forum Liver Cancer Forum
    Replies: 6
    Last Post: 01-11-2012, 03:40 PM
  4. Replies: 5
    Last Post: 07-10-2011, 02:24 PM
  5. One year and one month ago I found out I have colon cancer
    By topazil in forum Colon Cancer and Rectal Cancer Forum
    Replies: 12
    Last Post: 09-03-2009, 03:06 AM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •