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Thread: New diagnosis, sorta....

  1. #21
    Senior User Dead Man Walking's Avatar
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    This is sort of a followup post to my change in diagnosis, and perhaps a cautionary tale for those that might read this thread in years to come. I went from a supposedly healthy 67 year old who was going to have an artificial knee put in two weeks later to a Dead Man Walking in about 6 weeks flat, and nobody ever really explained the disease to me at all! I was given the standard 3 + 7, which turned out to be a complete disaster because I had a particularly nasty mutation [ inv t(3:3) ] which turns out to be resistant to chemo and has a very poor prognosis. That was apparently understood by the doctors, whoever they were, and as of July 2016 I was given a 50% chance of living until Christmas 2016. After I crashed and burned because the 3 + 7 bounced off my AML like a BB off an Abrams tank, a hastily chosen Plan B was azacitidine. The interesting part about this is that I have since uncovered clinical studies from 2009 which shows that azacitidine is clearly superior to Conventional Care Regimens (CCR), and a copy of that study is on the trail I have left through this forum. So there WAS an alternate pathway at the time of my diagnosis, but unfortunately I was still ignorant about my disease and possible treatments.


    The BIG fact about leukemia that I have only recently learned is that MDS and AML are two diagnoses for the SAME disease, with a rather arbitrary demarcation line being set at 20% blasts in the bone marrow. Below 20% you have MDS (aka pre-leukemia) which is a slow progressing disease that can go on for years, and above 20% you have AML, which is a very rapid disease and can kill you in a matter of a few months. After recently talking with my current oncologist about this, apparently the only way to differentiate between the two diseases is to wait and see who lives and who doesn't! In retrospect, it would have been nice to know that my 14 month slog out into the unknown wastelands on azacitidine was towards an MDS oasis, rather than a biblical 40 year wander in the wastelands. As a final comment on this situation, once I had been told that I had "indolent AML", my many searches through the literature found almost nothing, and that was because the difference between MDS and AML was an a priori definition!!! In conclusion, it's a good idea to learn as much as you can about your cancer before committing to one treatment, both from the LITERATURE and from YOUR DOCTOR(s). Note that I say literature and not internet!! In addition, getting a 2nd opinion from another (and perhaps leading) doctor in your field of cancer is an odds-on good bet.
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    05/30/16 Undergo 3+7 chemo regimen
    06/??/16 TSHTF!! 3+7 doesn't touch AML, knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML. [:tombstone:]
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    Three 5 week cycles of azacitidine.
    04/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added
    Oncologist estimates survival time now 2 - 4 YEARS!!!

  2. #22
    Super Moderator Top User po18guy's Avatar
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    While in temporary exile on a certain Pacific island, I asked my hematologist about your situation. He posited that you might have had CML or even CMML which had transformed. The 3+7 and/or Vidaza may have eliminated the AML, leaving you with the original leukemia cells, which are indeed indolent.

    As you and I have learned the hard way, diagnoses are missed completely or inaccurately settled upon. Second opinions save lives, and a consult with an acknowledged expert/specialist can make a night or day difference. The good news for both of us is that we are not living in a snapshot of current medical science vs. disease, but in a video in which the scene is constantly changing.

    Even though 20q deletion MDS is considered low risk, I had 26% blast cells in my marrow. So, would that be an "indolent" AML? Pending further investigation, you live with your indolent disease and I live with "Minimum Residual disease"
    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) 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 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.
    08/17 Bone marrow aspiration/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. Two sub-types of lymphoid malignancies and a myeloid malignancy lend a certain symmetry to the journey.

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

  3. #23
    Senior User Dead Man Walking's Avatar
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    This is an update which has to do with my health, and at the same time the health of my therapy dog, Annabelle. She was diagnosed last month with a carcinoma tumor in her nose, and needless to say, the thought of losing her was about the worst thing that could happen to me. My private war on cancer, which is what literally keeps me going, is detailed here: https://www.cancerforums.net/threads...re-cancer-down The treatment is 16 sessions of radiation at the veterinary school on the LSU campus, with one session every weekday. This requires general anesthesia and IV lines, and the main challenge is recovering from the anesthesia every day, in addition to being locked up in a steel cage for 3 weeks without getting petted by me and 250 Ochsner patients a week. The one thing LSU does is have one of the students call up every day with a progress report on Annabelle, and today I found out that Annabelle has essentially captured the fancy of the entire veterinary oncology department! If that wasn't enough, apparently other vet students are coming in to see her! They have padded benches in some of the halls for people to sit on, and apparently Annabelle spends time on a bench getting petted by everybody that goes by. With this kind of thing going on, Annabelle isn't going to just give up and let go, which means that I don't have to worry about the same thing happening to me, and that has been my greatest fear all along.
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    05/30/16 Undergo 3+7 chemo regimen
    06/??/16 TSHTF!! 3+7 doesn't touch AML, knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML. [:tombstone:]
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    Three 5 week cycles of azacitidine.
    04/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added
    Oncologist estimates survival time now 2 - 4 YEARS!!!

 

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