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Thread: Father just diagnosed with Chronic Myeloid Leukemia.

  1. #1
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    Father just diagnosed with Chronic Myeloid Leukemia.

    This is my first time to this site so I figured I'd try it out.
    My Father is 53 and a Gulf War Veteran. He developed Polycythemia Vera 2 years ago and we just found out he has developed Chronic Myeloid Leukemia possibly as a complication from the Polycythemia Vera. He has a host of issues now: very high blood pressure and the meds are not working to lower his levels (resistant hypertension). He has been going for Phlebotomies bi Weekly and those were helping but not anymore. He had skin cancer removed from several places on his face this year as well. And he is type 2 diabetic. So it seems like it's one thing after another lately.
    Long story short he is not telling me much and this all is brand new so we're not sure what to expect with this disease. The only cancer that has been in our family was his mother (died of breast cancer at 50) and his aunt also with breast cancer.
    Does anyone here have any experience with CML or your relatives having it? Some sites have said it's a death sentence where some say he will live a normal life span. So we're confused. Thanks so much and god bless.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this. Dads are not always the most communicative individuals. With his other health issues, it would seem that the CML is down the list just a bit. "Chronic" is the key word. That refers to time and the disease itself is slow growing and is considered to be a manageable illness, with one's lifetime potentially being near normal. It often responds very well to treatment and that treatment may consist of only a pill taken daily.

    Here is a link to the information page regarding Chronic Myeloid Leukemia from the Leukemia and Lymphoma Society. He will want to contact the Veteran's Administration, as exposure to certain factors in the Gulf War may have increased his chance of developing the CML. There "may" be assistance available from the VA.
    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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    Sorry to hear about your father's diagnosis. As po18guy has said, it can be a manageable illness. Very often one pill a day is all that's needed, if that medicine is tolerated well and continues to work. While I was doing chemo and getting my stem cell transplant for AML, I became friends with another patient. He had CML that responded well to pills for three years, after that he was unable to keep them down. His oncologist switched him to another medication, which didn't control his leukemia. He finally needed to get a stem cell transplant. So, this is an option with in extreme CML cases.

 

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