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 55 of 55 FirstFirst ... 545535455
Results 541 to 544 of 544

Thread: One haploidentical transplant experience (ongoing)

  1. #541
    Senior User
    Join Date
    Sep 2016
    Location
    Colorado
    Posts
    270
    Great News, Jim! Keep up the good work!
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists)
    June 2017, Only partial remission with Brentuximab
    July, 2017, ICE x 2 (worst yet). Awaiting PET-CT scan.

  2. #542
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,639
    Quote Originally Posted by David52 View Post
    Plus, to not put too fine of a point on it, you (and I) is old! Neither of us should be out and about. So lets just keep whacking at those stats.
    65!!! It's getting serious! You and I are pushing the age stats forward in allo transplants.

    Quote Originally Posted by VMarie View Post
    Great News, Jim! Keep up the good work!
    Thank you! I was rather surprised to hear that nothing major is going on in my marrow. during ECP on Monday, I hope to get a full report, or at least a copy.
    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.

  3. #543
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,639

    MDs or MDS?

    Big day yesterday, even if I left home blissfully unaware. I was expecting a blood draw and the usual ECP treatment. On arrival, I found out that I had not only that, but also a Dexa scan of my bones, to check the status of the osteoporosis. From there, it was off to pulmonary function testing to check for evidence of GvHD in my lungs. Then, 10 vials of blood for what seems like every test known, and then off to follow up for grip-strength testing and a timed walk related to the clinical trial I am in. My lungs, grip strength and walking were all satisfactory. After that, it was an appointment with the long-term follow-up transplant folks.

    After some listening to my lungs, having various sections of skin pinched and mobilized for sclerosis evaluation, checking joint flexibility and having photos taken, it was off to ECP. A plus is that the ECP seems to be improving the scleroderma, a thickening/tightening of the skin associated with allogeneic transplants. The attending physician was surprised at the GvHD, as most Haploidentical transplants are essentially free of that unwanted side effect. Ah, but that applies to others! However, the quick lunch that I had wolfed down in between seems to have had some cross-contamination, which caused a flare of the rash on my upper body. Great timing!

    So, a skin punch biopsy was done as I was connected to the ECP centrifuge (a non-exploding version!). But, I also learned that my marrow, while clear of lymphoma or leukemia, showed 2% cells with what is known as "20q Deletion" a genetic error that is seen in cases of MyeloDysplastic Syndrome, technically a marrow cancer. It is a condition that will be watched and is not treated unless it progresses substantially.

    Oh, still waiting for a call back from the podiatrist, as one big toe nail is now ingrown while I stubbed the other and it will have to be removed. In the lab, I saw a three year old who was in chemo for a childhood cancer. I have nothing to complain about.
    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. #544
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
    Posts
    6,026
    You make my journey look like a veritable walk in the park, POGuy. It is truly amazing what you have endured (and continue to endure) in the name of both science and survival. You are an amazing person.

    Good health,

    kermica

 

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
  •