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Thread: Anybody else in here have Refractory (terminal) AML??

  1. #1

    Arrow Anybody else in here have Refractory (terminal) AML??

    I thought I'd sign up and see if there is anybody to compare notes with. Apparently I'm so far off the reservation that my case is VERY unusual, and all my oncologist tells me is that I'm really weird. People have been telling me this for decades, but they were referring to my personality traits. I'm a retired 3M "lifer" and mad scientist with 35 years in the company, and 25 in the 3M Healthcare sector. I'm on azacitidine, which I've gotten very used to, and next week is my 1st anniversary of my original AML diagnosis. The refractory detail came after the usual 7-3 induction, and while the idarubicin didn't even make me nauseous, much less puke, it completely nuked my immune system didn't touch the AML, and I nearly died. Thankfully, the ordeal completely wiped the 1st month from my memory. After this initial disaster, I was given a 50% chance of living until last Christmas.
    As the summer and fall wore on, nothing more really happened to me, and my original oncologists ( and me) started realizing that my condition was not typical. My wife had been planning for us to go down to Louisiana eventually because that was where the 1st grandchild was located. My oncologist told us to get our butts in gear while I was still healthy, and we wound up in Covington, Louisiana (aka "The North Shore") the 1st week in November. I was nearly dead of exhaustion, but the AML was still missing as far as making me weaker or sicker. A couple of bone marrow biopsies have been done, and while there are still CD34 cells with the 3:3 intermediate risk mutation in my bone marrow, it's still below the 20% formal diagnosis level.

    Since then another 6 months have passed, and the AML is still hiding out, and neither my oncologist or Las Vegas will touch the "OVER" bet on my longevity with the proverbial 10 foot pole. When I meet with my oncologist I bring my 2nd therapy dog Annabelle, and we indulge in small talk because I'm so far off the grid that there isn't anything else to say.
    Last edited by Dead Man Walking; 05-12-2017 at 02:11 PM.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,207
    Sorry to hear of your strange journey. Where are you being treated?

    Great pic, but forum rules do not allow images
    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. #3
    My oncologist is in the main Ochsner complex by the Mississippi near the south end of the Causeway Blvd. in New Orleans, and there is an Ochsner Infusion Clinic in Covington on the North Shore that is 4 minutes away from my house. In my spare time I do therapy dog work in the main Ochsner complex in the pediatric ward, which includes kids with leukemia. My own leukemia is pretty much a secret downtown apart from my oncologist, but it gives me a lot of insight as to what the kids are going through. My therapy dog Annabelle (picture not included ) is THE heavy hitter in the complex, and cheers up the kids, the parents, and the staff. We have 7 years experience in a hospice, 5 years experience (concurrent) in a critical injury/rehab hospital, and 3 years in a top notch children's hospital. My youngest client in the hospice was a 15 year old boy who looked about 12 and had terminal brain cancer.

    After the initial 7-3 failure, with all the experience noted above, I pretty quickly accepted my fate, BUT did have the revelation that the AML was going to have to come back and actually kill me, and until that happened I didn't have to worry about it. Two weeks ago my WBC count was all the way up in the normal level.

    The personal timelines in here are pretty impressive and varied compared to what I have gone through, and about all I could post is
    Azacitidine
    nothing....
    Azacitidine
    nothing
    .
    .
    .
    .
    .

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,207
    Please consider consulting with doctors at MD Anderson in Houston, or Moffitt in Tampa. They are two of the absolute best centers in the US, which employ some of the best and brightest, have some of the highest experience in treating relapsed/refractory disease, and offer the latest in clinical trials. I would not hesitate to travel to either if I thought it would improve my outcome. Since your blast cell level is still low, it may be that a less aggressive clone is at work - meaning that there is the potential to stop it. As well, if you can get to remission (or close), a transplant is your best hope.
    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.

  5. #5
    Thank you for the advice, and since I did live in the Twin Cities Metro when I was diagnosed, I had a consult with the oncology people at the University of Minnesota. I was enrolled in the genetic matching program, and no matches were found. My only sibling is my younger half brother, and I didn't even know he existed until I was 52 years old. (I was adopted) As such, a match is unlikely. There is the possibility they could take my own cells, feed them steroids, methadrine, and agent orange to turn them into killer cells, and put them back into my own body. Unfortunately, this is a treatment that is FAR more challenging that the traditional 7-3, and all the 7-3 treatment did was knock out my immune system and nearly kill me. As such, killer cells would be an all or nothing roll of the dice, and seeing as my AML is very well controlled with azacitidine, such a gamble seems very unwise. My birth mother died at age 61 of rheumatoid arthritis, so longevity is apparently not in my genes. My oncologist is shopping around for clinical trials, but seeing as I turn 68 the week after next, my chances for exclusion are pretty high. I already missed one trial because of this due to my age, and that one attached the chemo to an enzyme that is unique to the CD34 cells in my body, so the kill ratio of CD34 cells to normal cells is very high.
    Last edited by Dead Man Walking; 05-11-2017 at 05:46 PM.

  6. #6
    Experienced User
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    56
    Which of of the two groups is your Relapsed/refractory AML? One group is AML that is sensitive to the conventional chemotherapeutic agents like cytarabine and anthracyclines and the second is AML that is intrinsically resistant to or has developed secondary resistance to standard intensive chemotherapy.

  7. #7
    Second group. The standard 7-3 treatment bounced off the AML like a bb off an Abrams tank. All the 7-3 did was nuke my immune system, and the resulting infections damn near killed me. If I hadn't been at Mayo in Minnesota, I'm pretty sure I would have died. A hastily chosen Plan B was azacitidine, and it's kept me alive with the AML hiding out somewhere for a year now. Based on a clinical study that I referenced in the leukemia section, it looks like 2 more years may be possible. I meet with the MDAnderson Leukemia Department Head next Thursday in Houston.
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 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 Onc 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
    12/4/17 Diagnosis: Uncontrolled refractory AML

  8. #8
    Experienced User
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    I found the following article that speaks of Treating Patients with Relapsed/Refractory AML and with your comprehensive understanding of your AML, you might find it beneficial.

    Avenues of Salvage Therapy/Clinical Trials refer to link below for details

    http://journals.lww.com/oncology-tim...ory_AML.6.aspx

    For patients with relapsed or refractory AML who fall into the second category, several investigational treatment approaches exist

    Molecularly Targeted Therapy
    Antibody-based Therapy
    Epigenetic Therapy
    Additional Salvage Treatment Options

  9. #9
    My oncologist tried to get me into a clinical study where IF the cell mutation had a specific enzyme in it, (which it did), a treatment was available that would target ONLY cells with that enzyme, so the chemo would be highly specific to the cancer cells and leave normal cells alone. Unfortunately, the age cutoff for this study was 65, and I'm 68. (Where's the "moon" smiley on this board??)
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 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 Onc 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
    12/4/17 Diagnosis: Uncontrolled refractory AML

  10. #10
    Experienced User
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    It boggles the mind that medical centers/ doctors set age cutoffs as if setting up lines is set in stone. Wouldnt it be better for Dr's to look at the individual and his or her medical history, treatments, genetic makeup, profile, details of the subtype of AML, and how good or poor of a candidate they would be for the trial and its treatment measuring the benefits and risks. You could be a better candidate at 68 than a 55 year old.

 

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