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Thread: New Member, unfortunatley

  1. #1
    Newbie New User
    Join Date
    Jun 2018

    New Member, unfortunatley

    Good day all. My name is Howie and I have been recently diagnosed with leukemia AML on March 6 2018

    I had no idea I was sick. While moving some furniture I found myself having to sit down every 2 minutes to catch my breath. I thought it was my heart. I made an appointment and saw my local GP the next day. He instructed me to go to the ER at the local hospital as they could do the appropriate testing. Blood samples were taken and after a few hours a nurse comes rushing down to put a mask on me. I found it a little odd. About a half an hour later a doctor appeared and he informed me that I most likely had leukemia! What a kick in the ass.

    I was admitted to Vancouver General Hospital, in British Columbia on March 9. While I had my first round of chemo I unfortunately developed an infection in my leg where I had a previously partially torn a hamstring. This infection set me back a long way, as the doctors deliberated on how to deal with the infection. The infection became so great that I fell into a state of delirium. That was one of the most horrific experiences in my life. It was as if demons had taken my brain and opened a Pandora's Box of wicked hallucinations for me to cower from. Worse yet they had to take an MRI of my leg and arm (another infection), I was reeling when in that machine..... ready to die. To top it off when I was back in my room I was being attended by two nurses, I was unsure in my state what they were up to. She told me to take a deep breath and that was when I got my catheter. OMG I was not ready for that. I howled as they plunged that thing into me, so much so that I actually laughed at how high my voice went.

    At long last the doctors performed a surgery to remove the infection from my thigh. They tell me it was about 11x4x3 cm. (sorry about metric) I figure the size of a bratwurst. Once that was treated I finally regained some normalcy. The swelling of my leg subsided, my appetite returned and I felt somewhat better.

    Now I have completed my second course of chemotherapy, and am having yet more complications. I have in the past have had occasional flare-ups of gout, but now this apparently has been like a perfect storm. The entirety of my feet are in great pain, if I try to stand on them I go to 8/10 on my pain scale. I am being treated with prednisone and it is slowly helping to where I can at least walk. I suffer greatly from night sweats! It was discovered with a CT scan of my chest that I likely have a fungal growth now which could be the cause of the night sweats. Tomorrow I go into daycare to have a procedure done on my lungs to identify the fungus.

    Woe is me.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear of this. Out of all the bad, the good is that the BC Cancer Agency is very good. I would imagine that the plan is to get you into remission and then transplant you? As well, I do not know about Canadian availability, but the US FDA just last year approved the first new/additional AML treatment in like, 40 years. Still, with both AML and ALL originating in the marrow, the surest solution is to nuke and replace the marrow. I had that done in my 60s and I survived it, so the goal for you I imagine is to get you some new marrow?
    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.


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