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Thread: My brother has AML M5b

  1. #1
    Newbie New User
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    Jul 2017

    My brother has AML M5b

    Hi All

    My brother suffered a stroke in March of this year and was immediately diagnosed with AML thereafter. He had induction therapy and was in complete remission. Due to his stroke he was not strong enough for the consolidation therapy. He had to go to a different hospital for acute physical therapy, which he did very well. He is walking with the assistance of a walker and gained back partial use of his arm. His speech and memory were never affected. The oncologist had him on Vidaza as an out patient until he was stronger to receive the consolidation therapy. He had one cycle, and on his first day of his second cycle his blood tests came back suspicious. The second blood test came back worse. He relapsed. He's now back in the hospital and completing his last day of chemo, three different types that he was on for 5 days. He was told he had a 50% chance of surviving the chemo, but if he didn't do it, he'd be dead in 2 to 4 months. He is 53 years old. The Oncology team told him today that he is doing better than expected. I'm not sure if they are re inducing him for a remission and eventually a stem cell transplant or if they are just prolonging his life.

    Any thoughts?

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Very sorry to welcome you here under these circumstances. Your brother certainly has suffered. As to his treatment, I suspect that they are trying to do both things. The point of treatment is to cure, if possible, to prolong life if practical and to move to transplant, as that offers the best hope for a permanent solution. Both conditions complicate each other, but there seems always to be a way through it - especially with loving family and friends at the ready.

    There are AML survivors here who have defied the odds. Search the various other forums here and you will find many who have survived - even thrived - well past predictions. A lot of your brother's success will depend upon his attitude and perspective. So far, it sounds like he is doing better than expected and remains a fighter. All good signs.
    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
    Dear Teresa: I'm sorry to make your acquaintance under circumstances like these, but at least you found a soft spot to land and hang out for a while. You can read about my jaunt with AML in my signature, and for me Vidaza was a winning lottery ticket, with me hitting odds smaller than 1 in 20 to begin with, and now I'm so far off the map that there is no basis for prediction anymore at all. It's definitely good news that he survived chemo with a 50/50 chance, so you should feel good about that. If the oncology team said he is doing better than expected, that means that he exceeded whatever odds they actually gave him, so that's ALSO good news. My educated guess is that they are reconsidering their options and clinical approach to your brother, seeing as he has held in there this long already.

    As far as your statement of whether they are trying to reinduce and go for a stem cell transplant or "just" prolonging his life, I'd say it's a waste of time to try and think of things that way, both for yourself and for him. The issue is quality of life, regardless of the circumstances, for as long as you are both alive. I have no idea how your story will end up, but AML is an incredibly lethal disease, and you and your brother are already ahead of the game as far as I can tell. I'd encourage you to take things one day at a time, and if both of you see the sunset then it was a good day, and that's the way you should feel, period. Please feel free to keep asking questions as things go along, and there are a few of us in here with AML who will be glad to share.

    P.S. And speaking of sunsets, if you go to the "Lounge" you will find a series of Sunset posts that you might want to share with your brother when you visit with him. I took ALL the Volume 1 photos after I received my terminal AML diagnosis, and that's a full YEAR of pictures.

    Best regards, DMW

    Last edited by Dead Man Walking; 07-16-2017 at 08:09 PM.
    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

  4. #4
    Newbie New User
    Join Date
    Jul 2017
    Thank you both for your replies, it lifts my hopes up, which was waning for a bit. I'm glad I found this forum as there were so many other sites I've been on and where last posts were a few years back.

    Thanks again!

  5. #5
    Newbie Regular User
    Join Date
    May 2017
    Hi Teresa,

    Sorry to hear that your brother has to deal with a stroke and AML at the same time. I was in perfect health otherwise when I was diagnosed with AML. I can't even imagine how difficult it would be to have a stroke on top of leukemia. As far as leukemia treatment is concerned, lots of chemo is the first step before one gets a stem cell transplant. I had two rounds of induction chemo, two rounds of consolidation and another one to prepare me for the transplant. Chemo is very rough on the body, but it's good that your brother is handling it relatively well. Next month I will be celebrating the first anniversary of my transplant. I am still in remission. As I was going through my treatment, I set goals for myself: to see my first grandson born last September, celebrate Thanksgiving and Christmas with the family, camping trip this summer. I savored each one of these events and was grateful to be alive to enjoy them. Now I am ready to set new goals for this coming year. Encourage your brother to focus on positive things in his life. There is so much we can be grateful for every day.

  6. #6
    Newbie New User
    Join Date
    Jul 2017
    Hi Jane!
    I'm glad to hear that you celebrated your transplant anniversary! I hope you are feeling well. While my brother (his name is Joe) strives to do his physical therapy to strengthen his leg, he was put back with relapse. Now that he's home from the hospital and looking forward to building his strength; he's trying his best to gain back mobility. He's very thin, 134 lbs, from 230 lbs when all was started. Can I ask, how did you find out you had leukemia?

  7. #7
    Newbie Regular User
    Join Date
    May 2017
    Hi Teresa!

    I also lost 60 lbs while I was going through chemo, transplant and recovery. I am now gaining weight, as my appetite has returned. I don't care for sweet baked stuff anymore though. I am exercising at the gym three times a week, and my muscles are finally returning. At the lowest points in my treatment I had to use a walker to walk on the days when I had energy to walk. There were many days at the hospital when I only had enough energy to get up to go to the bathroom. It feels so good to start feeling normal again!

    My AML symptoms felt like flu, then extreme fatigue. Finally, I had chest pains and couldn't breathe. My husband took me to ER, since I thought I was having a heart attack. Turned out my hemoglobin was 4.6 - that's why I couldn't breathe. It took three weeks for me to start my treatment from the first day I began feeling tired. I was hoping my symptoms would go away.

  8. #8
    Newbie New User
    Join Date
    Jul 2017
    Hi Jane,

    It amazes me how different symptoms affects different people. If Joe didn't have the stroke we would have never been made aware of his leukemia. He's my mother's caregiver and he was always on top of his game. He was actually out clearing the driveway and walk since we had a bad snow storm a few days before. He didn't suffer any symptoms except for the stroke, which we now know was due to leukemia. When he was taken to the hospital and tests were done, the doctor asked him the last time he had blood work done. It was six years before due to rotator cuff surgery. The doctor said to him "then I guess you were never told your white blood count is twelve times higher than it's supposed to be". We knew then that it was Leukemia. It was just a day or so after that it was confirmed.

    I'm glad that you are starting to feel normal again, please keep me informed of your progress as I am already a big fan of yours! Take care and the best of luck to you!


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