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Thread: 2 months into treatment.

  1. #1

    2 months into treatment.

    Hi. I'm Washington. 22, male.

    Finally decided to join in here after lurking for a month or so. I was diagnosed with AML (M2) at the end of May this year and started treatment early June. I have had two chemo sessions of D3A7. Never cared to know the names of the actual drugs that make up that treatment or their doses. Should I? Anyway. I had a remission after the first one and am currently in one too. The last dose of second chemo I received was on July 10th.

    Now all that's great but I have decided to go for a transplant already because my doctor has classified me as having intermediate risk. I have neither the FLT3-ITD mutation nor the NPM1. I do have chromosome abnormalities of which I have only understood that they are related to a deletion 8.

    I am up for transplant straight up because I don't want to destroy myself with consolidation chemos (am matched with my only sister). Besides, I don't want to put too much confidence in my current good clinical health/remission and mistake relapsing and making things untreatable.

    Problem is I don't want to be transplanted by my current doctor/hospital and am seeking second opinion and alternate options. Thinking about going abroad (not murican by the way). But in the meantime I can't discontinue treatment I am having and my doctor has started HiDAC chemo for tomorrow on. I'm not sure about it. Its high-dose consolidation and I dont understand the point of it when an intermediate-cytogenetic patient in complete remission could either go transplant or continue chemo. And I have already decided on transplant. Do I really need this third chemo and have to tie myself up for three more weeks, just to ensure I don't get sick again until I resolve the logistics of shifting hospitals?

    Kind of selfish that I joined here when I had a query. But I had to start at one point or the other. And would really like to contribute so I might as well get comfortable through this thread.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    10,443

    Seek out an excellent transplant cernter

    Welcome! I don't know where you are located, but that can make a difference in outcome - both as to the level of treatment and the quality of treatment. In the US for example, the Fred Hutchinson Cancer Research Center has perhaps the highest reputation in transplants. Patients arrive there rom all over the world for treatment.

    As to the consolidation therapy that you are receiving, it is a standard part of treatment. With aggressive cancers, a remission can be achieved very quickly. However, the limitation is medical science's ability to detect cancer cells. Beneath a certain threshold, they are not easily detectable, but are still proliferating in the body.

    Consolidation therapy is intended to "mop up" any remaining cancer cells in your body. Normally, that therapy uses different "resistance mechanisms" than the primary chemotherapy that you received. For dome unknown reason, a certain percentage of the cancer cells will not respond to your primary therapy, so a different approach is used to attempt to finish the job.

    Remission is a great sign, yet aggressive cancers have a propensity to relapse, which then makes subsequent treatment more problematic, since the cells that remain are those which are resistant (or immune) to treatment. We see this same process in the case of treatment-resistant bacteria, such as MRSA. Sadly, to save our lives, what we are also doing is breeding a superior cancer call.

    For this reason, transplant can be the greatest hope for a cure. When someone else's immune system is transplanted into your body, it normally identifies and attacks all cells that it senses are foreign. While some of these calls are your own healthy cells (Graft Versus Host Disease, or "GvHD"), the cancer also falls into the target range. Essentially, you want your sister's immune system to begin operating in your body as soon as possible, all the while protecting your vulnerable healthy cells from the same attack.

    A stem cell transplant is basically the reverse of an organ transplant. I you had an organ transplanted into your body, drugs are used to prevent your immune system from rejecting the new organ - which it may decide to attack. In the case of a stem cell transplant, it is someone else's immune system that has to "learn" every cell in your body so as not to attack it. It is a balancing act, but successes are increasing as knowledge is gained. The fact that your sister is a close match bodes well for you. Doctors will seek a balance between GvHD and effectiveness of your sister's immune system against the cancer cells that remain in your body.

    This is an area that requires a lot of pondering and searching. All the best to you on your journey.
    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
    Thanks for replying man

    Yes, I do realize the pluses of consolidation chemo but I also discovered that it doesn't really help the overall survival if it is followed by a BMT. Besides, as far as the mopping up is concerned, the GvHD can do that don't it?

    You're right this needs a lot of researching. I live in Pakistan and my likeliest option is India. I don't afford US. India does have some good transplant centres. But I am not sure how long it'll take for me to get there. Couple of weeks, probably more. Until then, the leukemia cells could get out of control and if I take this third chemo, it'll really be to fill that gap. Otherwise I would have gone for a transplant straight, if the desired facility was accessible.

    I am hopeful I'll find the right option for me. I still am in the second best transplant facility in the country but they seem to be unsure about AML outcomes. Let's see. Thanks again.

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,443
    The question remaining is if continued consolidation therapy will help get you to the transplant. These are not pleasant decisions to make, but make them we must. Here is a link to the doctors who treat leukemia at the facility where I am treated. You might email them and ask their advice - it is a world-wide network of doctors and they may be able to refer you to someone in India.

    All the best to you.
    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.

 

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