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Thread: Friend with refractory AML

  1. #1
    Senior User
    Join Date
    Apr 2012
    Posts
    110

    Friend with refractory AML

    Hi Everyone,

    I'm new to the leukemia forum. But not new to cancer forums which has been a support to me during my illness. I'm a lymphoma patient currently in remission. Sadly Im writing here for my dear friend who was diagnosed with MDS in February this year after being in remission from DLBCL for two years. She had her lymphoma treatment at Memorial Sloan-Kettering. And treatment for the MDS at Memorial Sloan-Kettering as well but MDS progressed to AML. Since that time she has participated in a clinical trial to Columbia-Presbyterian with a drug that targets CD33. We found out definitively today that the drug is not working. They are now suggesting sertraline (Zoloft) in combination with timed sequential cytosine arabinioside (ara-C) with cytarabine. The goal is to get to transplant. She has a sibling 100% match ready and waiting. I understand from my own physicians who I have inquired with about her case that this disease is very difficult to treat. Not that any are easy. I'm looking for any input about options, success, trials etc. keeping in mind that she is already a patient at Sloan-Kettering and has an excellent team of doctors. Just want to make sure we are not over looking possibilities. There is such a wealth of information here on cancer forms with all of you contributing your experiences. Any input is greatly appreciated. Thanks so much.
    Mary
    Diagnosed Sept. 2011
    Non-Hodgkin's Lymphoma - Diffuse Large B-Cell Stage 4
    6 rounds R-EPOCH and Prophalaxis Methotrexate at rounds 1, 3 & 5
    PET after round 2 NED, PET after round 6 NED
    Remission officially Jan. 2012
    May 2012 PET NED
    Nov 2012 CT NED
    March 2013 relapse, started R-ICE X 2
    June 2013 Autologous Stem Cell Transplant
    August 2013 Auto Transplant failure
    Dec 2013 - Participating in clinical trial at NIH, Allogenic transplant for relapsed lymphoma that is NOT in remission
    Feb 2014 started Ibrutinib in conjunction with transplant
    March 2014 PET NED
    March, April, May struggling with gvhd of gut
    May 2014 status of lymphoma unknown until GVHD treatment complete.
    Sept 2014 CAR Therapy, immediate response
    Nov 2014 PET and MRI NED
    Feb 2015 PET NED
    March 25 2015 PET NED, GVHD of skin with sclerotic changes.
    Aug 20 2015 PET NED, skin and eye GVHD continues, moderate/severe covering 80% of body. Treating with ECP, prednisone and low dose Ibrutinib

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,304
    Mary, due to various flareups, I have been a member in absentia for awhile now. Very sorry to hear this news, and yes, AML is very difficult - even more so if certain mutations are present. There has not been true progress made against AML in almost 40 years - unheard of in the cancer world. Still, if it can be battled back, or possibly to a standstill, transplant is the way to go. Here is hoping and praying that a good outcome will result from all of this.
    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
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Posts
    9,858
    Blog Entries
    2
    Mary

    A bit of hope for you.... My brothers father in law was diagnosed with AML about 5 years ago. He is alive and well today with no signs of cancer. It can be done it is a tough one to beat but it can be done.
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #4
    Senior User
    Join Date
    Apr 2012
    Posts
    110
    Thank you the support. Since my post MSK has said they will do transplant no matter what. It has to work. I will be praying on that.
    Diagnosed Sept. 2011
    Non-Hodgkin's Lymphoma - Diffuse Large B-Cell Stage 4
    6 rounds R-EPOCH and Prophalaxis Methotrexate at rounds 1, 3 & 5
    PET after round 2 NED, PET after round 6 NED
    Remission officially Jan. 2012
    May 2012 PET NED
    Nov 2012 CT NED
    March 2013 relapse, started R-ICE X 2
    June 2013 Autologous Stem Cell Transplant
    August 2013 Auto Transplant failure
    Dec 2013 - Participating in clinical trial at NIH, Allogenic transplant for relapsed lymphoma that is NOT in remission
    Feb 2014 started Ibrutinib in conjunction with transplant
    March 2014 PET NED
    March, April, May struggling with gvhd of gut
    May 2014 status of lymphoma unknown until GVHD treatment complete.
    Sept 2014 CAR Therapy, immediate response
    Nov 2014 PET and MRI NED
    Feb 2015 PET NED
    March 25 2015 PET NED, GVHD of skin with sclerotic changes.
    Aug 20 2015 PET NED, skin and eye GVHD continues, moderate/severe covering 80% of body. Treating with ECP, prednisone and low dose Ibrutinib

  5. #5
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,304
    Quote Originally Posted by Mary Z View Post
    Thank you the support. Since my post MSK has said they will do transplant no matter what. It has to work. I will be praying on that.
    Amen to that!
    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.

  6. #6
    So good to see you posting,PO...
    His fight is over. How brave he was. 47 years of love.

  7. #7
    Newbie New User
    Join Date
    Jul 2018
    Posts
    7
    What was your mutation?

 

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