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Thread: New guy on the block

  1. #11
    Regular User
    Join Date
    May 2017
    Posts
    33
    Sorry been awhile since I checked in, had my stem cell transplant Feb 22, 2017 so been about 15 months now. Still taking my Nilotinib - Tasigna 400 MG every day my doctor said he MAY try and start to take me off of it March 2019 MAY TRY.
    Anyway doing good been trying to enjoy each day as much as possible. Have some Graft Vs Host disease off and on seems that the sun brings it out and I love to fish.

    Have some skin issues but seems that is one side effect of the Nilotinib also muscle pain also s side effect but then I have had other operations and broken bones over the years. BUT the main thing as we all know my ALL is still inactive hope it stays that way.
    Made reservations for June 2019 to take my kids and grandkids to Disney World to celebrate my second late birthday I hope. Since I am also medically retired from the Marines we can stay at Shades of Green on Disney property that is the only way I can afford to do this for my family hope to give them all something to remember me by.

    For those just starting to deal with Leukemia treatment God Bless it is a long treatment but hang in there I have been through allot but am still inactive I have been blessed.

    Hope you all suffering from cancer treatment of any kind do good and may God Bless us all.

    Keep a positive outlook tell yourself I am going to win this war and keep on fighting you can get better.

  2. #12
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,337
    That's the Marine spirit! One day at a time, indeed! I was slow to begin with and am even slower now, but still making some sort of progress. Just passed the three-year mark. If you love to fish, check out Academy Sports online. They have tons of SPF/ UPF fishing clothes, both name brand and house brand. The typical REI and outdoors SPF clothing is $$$, but if you approach it from the fishing angle (as an angler, huh?), it is far more affordable. It's long sleeves and hat for me now.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    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 TEC (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 and precursor to Acute Myeloid Leukemia.
    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 measurable - 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. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    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. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    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.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

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

  3. #13
    Experienced User
    Join Date
    Sep 2012
    Posts
    91
    Quote Originally Posted by Brucecav View Post
    Sorry been awhile since I checked in, had my stem cell transplant Feb 22, 2017 so been about 15 months now. Still taking my Nilotinib - Tasigna 400 MG every day my doctor said he MAY try and start to take me off of it March 2019 MAY TRY.
    Anyway doing good been trying to enjoy each day as much as possible. Have some Graft Vs Host disease off and on seems that the sun brings it out and I love to fish.

    Have some skin issues but seems that is one side effect of the Nilotinib also muscle pain also s side effect but then I have had other operations and broken bones over the years. BUT the main thing as we all know my ALL is still inactive hope it stays that way.
    Made reservations for June 2019 to take my kids and grandkids to Disney World to celebrate my second late birthday I hope. Since I am also medically retired from the Marines we can stay at Shades of Green on Disney property that is the only way I can afford to do this for my family hope to give them all something to remember me by.

    For those just starting to deal with Leukemia treatment God Bless it is a long treatment but hang in there I have been through allot but am still inactive I have been blessed.

    Hope you all suffering from cancer treatment of any kind do good and may God Bless us all.

    Keep a positive outlook tell yourself I am going to win this war and keep on fighting you can get better.
    Hats off Brother.. ( Combat US Infantry ( Light) 89'-'92) Keep up the good work. Being a Marine, you know exactly how to "embrace the suck".... Nothing but love man... Tom
    Son Jacob - 21 years old
    Diagnosed Acute T-Cell ALL July 15th 2012
    Induction Phase from 7/17/12 to 8/15 ( Day 29) Hit Remission couple days prior
    He's on a "Clinic Trial" and qualified for Nelarabine in his Consolidation Phase/Maintenance Phase
    Started Consolidation 8/19/12 - Ended on 11/7/12
    Started Interim Maintenance on 11-28-12 - Ended on 1/23/13
    Started Delayed Intensification on 1/23/13
    Started Maintenance Arm B on 4/10/13 ( It will last 180 days
    Last Round of Nelarabine on 10/25 /13 - Port Removed on 10/30/13
    Started Maintenance Arm B ( No Nelarabine) on 12/16/13
    Continued maintenance ( 90 day lumbar with IT Chemo - 30 Day Vincristine push)
    Will have last Lumbar with Chemo in September 2015
    Off treatment in December of 2015

    Post Treatment issues:
    2016 - diagnosed with Necrosis of both knees ( in femur)

 

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