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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
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 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 Move to NOLA - 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%
    4/16/17 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.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  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 ("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.

  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
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 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 Move to NOLA - 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%
    4/16/17 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.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  4. #24
    Senior User Dead Man Walking's Avatar
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    Well, I am back from Europe, and I made a beeline to the LSU Vetrinary Oncology school in Baton Rouge to pick up Annabelle after 3 weeks of radiation treatment for the carcinoma in her nasal cavity. As noted above, she pretty much cast a spell over the entire Vet school, and she handled it was well as I am with cruising along with my azacitidine and Clenexta. So we're back in business to some extent next week. and if being a 1%'er wasn't enough with my indolent leukemia and weird mutations, we may very well be the only extant therapy dog team where both handler and dog are cancer survivors. What an absolutely unique and almost alien experience.
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 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 Move to NOLA - 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%
    4/16/17 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.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  5. #25
    Super Moderator Top User po18guy's Avatar
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    Welcome home! And, we know who was happier to see you!
    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.

  6. #26
    Senior User Dead Man Walking's Avatar
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    UNEXPECTED SPEED BUMP

    Okay, got back from Europe. picked up Annabelle from LSU, had my chemo week, and on Thursday about on schedule "the damn breaks" and I stop making firebricks. Cruising along taking my venclexta pills, and one night I might have taken an extra 2 or 3, so things got looser than normal, but no big deal. things stayed that way, and then I started feeling crappy with a slight aura, which meant it was a Blue moon, because I hardly ever get sick. It got worse, and damned if I didn't show a little bit of a fever. Then it gets worse from there and, on Saturday I wound up in the ER. Turns out I do have a low grade fever, but due to my AML they check my RBC, WBC, and platelets, and damned if all three of them are just about at the bottom of the barrel. Oh Shinola!! This has never happened before! So I get more RBC, which brings those up to their low but steady level. Unfortunately, my WBC and platelets are still barely above zero after more IV , so I'm officially neutropenic. The fever persists, and I am at the local ER so the cancer doc doesn't know me from a hole in the ground. He starts making relapse noises, which I don't appreciate, and I'm wondering if he's going to suggest the 3+7, so I do tell him that Dr. Kantarjian says I have indolent leukemia, and this doctor has apparently met Kantarjian himself, so he's no yokel. Now due to the brickmaking and then the dam breaking, I have suffered a painful amount of damage back there, and it's pretty obvious that there are tears, and Lord only knows how bad the damage is. This brings up two possibilities, with infections at more or less critical layers and locations. Then I start getting pain and pressure in my left lower quadrant, and that strongly suggests that my diverticulitis is back. That's got more that enough potential for a serious infection, and thankfully my doc switches to IV drugs for diverticulitis. Still, he keeps making possible 3+7 noises, and the bottom line for me that I need to get this checked out pronto. So I gat a signed release based on the promise that I see my oncologists in 48 hours, and for normal mortals that is a pretty impossible task. However, Annnabelle has been healing nicely, so I can just walk in the ONC ward with her in the lead, and I'll get seen no problem.

    So: The potential outcomes are that I had brick trauma infection, a case of diverticulitis, or that my indolent leukemia decided to wake up and get a job for totally unexplainable reasons. The doctor suggested that he could do a quick and dirty flow cytometry test with a blood draw to see where my CD 34 levels are at outside of the marrow, and while that seemed like rushing in to things a bit with a complete stranger, after a few minutes thought I decided that my impenetrable attitude had gotten me this far, so I told him to run the test. It's been two months that I have been on venclexta, so there's good news to hope for too.

    One other bit of news. The LSU Vet department has a public relations manager with a decent budget, so last Friday Annabelle and I sat down and did an hour long interview about both Annabelle's and my cancer, and all the different kinds of kids and adults we have worked with. I ramble on quite a bit, but even if you leave 80% on the cutting floor, it should be interesting. It remains to be seen how this neutropenic situation all winds up, but I'm getting a BMB done for sure regardless.
    Last edited by Dead Man Walking; 10-17-2017 at 01:29 AM.
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 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 Move to NOLA - 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%
    4/16/17 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.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  7. #27
    Super Moderator Top User po18guy's Avatar
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    Oh crud! Anyone talk about a marrow biopsy?
    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.

  8. #28
    Senior User Dead Man Walking's Avatar
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    I'm calling up my oncs and I'll just ask them when they want to see Annabelle today. She's definitely recovered to her old moochy, "rub my belly" self. Under the circumstances, I was going to ask for a BMB anyway. I'm fairly convinced it was diverticulitis, but after a neutropenic episode you can't be too careful, and all my BMB's are general rather than local sedation anyway.
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 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 Move to NOLA - 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%
    4/16/17 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.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  9. #29
    Senior User Dead Man Walking's Avatar
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    Met with my Oncs today, and as usual the most important topic of discussion was Annabelle's cancer and how SHE was doing. They viewed my blood tests that had been done the last few days, and contrary to what I was told at the hospital about my WBC, RBC, and platelets being near the bottom of the barrel, my Oncs said my numbers weren't really all that different. (??!! WTF?? I think there may be an important message here for cancer survivors, and that message is:

    A: For doctors who see "semi-professional patients" like me and World Championship Class patients like po18guy all day long, you get used to them living no matter what the numbers say, so Don't Panic!

    B: Doctors who see occasional cancer patients can get a LOT more bent out of shape about some low numbers, and make it sound like a lot closer to the end of the world!! Keep that in mind!

    I am going to be having a BMB next week, and we'll see what comes out. My ONC told me that there is also a new version of the 3+7 out that is a lot easier on patients, but based on my refractory mutations and the fact that the 3+7 never made me puke or get nauseous once, what good is that going to do me when my inv (3:3) mutation farts in the general direction of the chemo? Obviously, much more discussion is needed on that subject. As usual, I will be under general sedation lest another fired employee from the cheap muffler shop down the street gets a job in the OR that I'm going to!!

    So that the news from Lake Ponchatrain, where the water never freezes, and all the politicians are below average.....
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 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 Move to NOLA - 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%
    4/16/17 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.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  10. #30
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Pacific NW, USA
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    It is a fact that blood numbers that are shocking to primary physicians are run-of-the-mill for oncologists and hematologists. The reference point for the vast majority of physicians is the normal range of healthy human blood numbers. In the cancer world, everything is upside down. Numbers which are little more than sufficient to survive, even with transfusions, is often optimum in oncology. Therefore, the expression of shock on a primary or emergency physician's face must be taken with a grain or two of salt. What would they think of my zeroed-out, flatline blood numbers post-transplant? Were they staring at a "dead man walking" to employ a pun? Not at all, as it turns out. I suspect that snake eyes blood numbers might trigger a cardiac event in some of them! But, like garden weeds or cockroaches, some of us are not that easily eradicated.
    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.

 

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