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Thread: new to AML...

  1. #1
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    new to AML...

    My father has just been diagnosed with AML. I understand that it advances quickly and requires immediate treatment. He will start chemo in two days. My mother said that the doctors will put him on a 28 day program, beginning with 7 days of chemo at twice a day (two different kinds), followed by another 7 days of chemo, and I'm not quite sure what the rest is.

    It has all come so fast, and I am very worried...

    Why does it seem rushed? Why is there chemo twice a day? Are there are other forms of treatment we should consider or research? Is this form of treatment attempting to eliminate the cancer?

    I am new to this forum and to cancer. I would be grateful for any help navigating these early stages...

    Thank you,
    C

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to welcome you under these circumstances. Acute Myeloid (Myelogenous) Leukemia is indeed an aggressive leukemia. There is not much time to wait after diagnosis, and the sooner the better regarding treatment. As to treatment regimens, there are many of them, but only a few apply to AML. Depending on your dad's age and overall health, doctor may also consider a stem cell transplant, as that may be the most certain chance for a lifetime remission. Here is a link to informatio about AML: https://www.lls.org/leukemia/acute-myeloid-leukemia
    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. #3
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    Thank you very much for the quick response. I saw him today. He is staying positive. I think they want to start chemo tomorrow. I will continue to keep track of his treatment.

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
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    Location
    Pacific NW, USA
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    Here is a link to the Leukemia and Lymphoma Society's booklet on AML. You can also email them and they will mail you a hard copy.

    https://www.lls.org/sites/default/fi...assets/aml.pdf
    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.

  5. #5
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    AML subtype: Acute monocytic leukemia (M5)

    My dad (65) is in his second day of 7+3 induction chemotherapy. He has Acute monocytic leukemia (M5).

    Does anyone have any thoughts or guidance regarding this subtype?

    Thank you very much...

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
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    I have moved your post to your existing thread to keep all replies under one roof, so to speak. AML is rare. Each of its sub-types is quite rare. I hope that someone with some M5 experience can contribute here, but our journeys are so utterly unique, that we often must blaze our own trails. I would hope that your dad is being treated at a major center, university or research oriented.
    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.

  7. #7
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    3
    Hi Lakelight,
    I am sorry your father and you as the caretaker are going through this experience. I too was whisked into treatment very quickly, going from an ER visit for my strange fever/body aches to a flow cytometry test, bone marrow biopsy, to chemo in exactly one week. My AML subtype is M4 (Acute myelomonocytic leukemia), but I went through Induction (7+3) with Daunorubicin (the first three days) and Cytarabine (ARA-C, for 7 days). After Induction, you enter a stage called Consolidation, in which I did four rounds of chemo each in the hospital for five days. This involved a high dose of Cytarabine every 12 hours. His treatment and dosage maybe slightly different than mine because of his age.
    What I recommend is not focusing on so much on the subtype, but asking your fathers doctor about his chromosome abnormalities/proto-oncogene's and what this means. This provides a picture of not only prognosis (good, intermediate, poor), but also what is recommended within the treatment process with the factoring in of other information (age, general health, presenting WBC counts, etc). This will provide you with a slightly clearer picture as to what the goal of treatment is (combined with what your fathers goal is). You may not exactly know what the next steps are until after his two week biopsy to confirm the marrow is gone and his four week biopsy to confirm what has grown back is free of cancer (remission). Options exist if remission is not achieved from consolidation or if a stem cell transplant is not a viable.
    To be blunt, this will be quite a battle ahead. Unfortunately, AML is still a very difficult disease to treat. While science has come along ways, my doctor and I often discuss that the treatments used for AML are still essentially the same now as they were in the 1970s. Advancements have been made in dosage/timing/mixing and certainly with the bone marrow transplant process. Leukemia was one of the first cancers to be "mapped" out, with doctors knowing what type of chromosome/gene abnormalities exist now. They simply do not know what to do with this information yet, but we are slowly getting there.

    A question for you: Is your father at a National Cancer Institute or teaching hospital? These centers have doctors who only specialize in blood cancers and also have access to a wide array of clinical trials and experience in transplants. You should consider going to a center after induction if you are not already at one and getting a second option. My doctor sending me to a NCI drastically changed my treatment between consolidation and a bone marrow transplant.

    Prayers for you and your family.

  8. #8
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    My father had AML and everything did happen very quickly. He went to the doctor for what he thought was maybe pneumonia or bronchitis that he was just not getting over. The doctor saw something that he didn't like and sent my dad to the ER. 4 hours later, still in the ER, he was told he had leukemia. About a week later, he did the 28 days doing chemo. It was a hard chemo and it was hard for us to watch him go through it. There were times he was in atmosphere controlled room to make sure he didn't pick infections from others and times when he had no resistance so we couldn't go see him if we had a cough. There were points we weren't sure the chemo wasn't doing him more harm than good. We were told that they were giving him the toughest chemo his body could take. But at the end of the month, he was in remission so it was worth the fight. I wish I remembered now what his subtype was. But there are a lot of factors besides type and subtypes. Overall health going into the battle is a big deal as well as the attitude.

    Talk to the doctors with your parents. There was a lot of things said that my parents were in too much shock to be able to absorb and that we had to help translate to my parents later on. If you don't understand or aren't sure what the doctor is saying, ask the doctor if you can repeat it in your own words. It is a new language to learn, many medical terms that blow right past us.

 

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