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Thread: Motherīs Myeloma is back..

  1. #1

    Motherīs Myeloma is back..

    Hi all of you. I am normally a member of the prostate cancer forum but I thought I could post a question here. My mother was diagnosed with MM at the age of 64, since then she has had two stem cell transplants. The first one held the MM back for 7 years and the second also 7 years. But now after 14 years it is back again and her doctor has been clear from day one that she cannot have a third transplant. It is progressing slowly and so far she is without symptoms. Her doctor has not yet told her what treatments are in her future, I guess he donīt want her to worry in advance.

    So what do you guys think can be done in her situation? What should we be prepared for? I should have said that we are located in Sweden also.

    Grateful for any advice.
    Born in 1962
    PSA 6.5, free PSA 10% Oct 2014
    10 biopsies taken Oct 2014
    6 biopsies G 3+3
    2 biopsies G 3+4
    T1c
    Total of 30 mm cancer of 130 mm biopsy samples
    da Vinci surgery jan 7th 2015, nerves spared on one side and "almost all" on other side
    Catheter out jan 23
    Feb 2nd, one shield/day almost continent
    March 17 2015 PSA<0.1
    Final stage pT2, no external invasion, no vesicles invasion, no lymph node invasion, small positive margin
    August 24 2015 PSA <0.1
    February 18 2016 PSA <0.1
    September 12 2016 PSA <0.05
    April 14 2017 PSE <0.05
    October 2017 PSA 0.05....
    Jan 2018 PSA 0.05
    Aug 2018 PSA <0.05
    Feb 2019 PSA 0.06

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,219
    Sorry to hear this. Have any clinical trials been mentioned? The trend is toward less toxic and more tolerable, especially for the elderly. I was in line for a trial of Ixazomib to control my GvHD, but the trial filled before I could qualify. I would imagine that she has received that drug? There is also a US trial of a ROCK2 inhibitor-class drug (Kadmon025), but that may not be available elsewhere. In any event, if it is slow growing ("smouldering"), treatment may not be needed for some time, allowing more experimental drugs to arrive.
    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 po18guy, I donīt know what she has gotten so far, I will find out. And yet no experimental treatments have been mentioned. I guess that the doctor still thinks as you, that there is time yet to decide.
    Born in 1962
    PSA 6.5, free PSA 10% Oct 2014
    10 biopsies taken Oct 2014
    6 biopsies G 3+3
    2 biopsies G 3+4
    T1c
    Total of 30 mm cancer of 130 mm biopsy samples
    da Vinci surgery jan 7th 2015, nerves spared on one side and "almost all" on other side
    Catheter out jan 23
    Feb 2nd, one shield/day almost continent
    March 17 2015 PSA<0.1
    Final stage pT2, no external invasion, no vesicles invasion, no lymph node invasion, small positive margin
    August 24 2015 PSA <0.1
    February 18 2016 PSA <0.1
    September 12 2016 PSA <0.05
    April 14 2017 PSE <0.05
    October 2017 PSA 0.05....
    Jan 2018 PSA 0.05
    Aug 2018 PSA <0.05
    Feb 2019 PSA 0.06

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,219
    Some forms of Myeloma have a stage at which they are detectable, but are not really progressing. Perhaps it is a less-aggressive clone at work - one that is more indolent in nature than before. We will hope that this is the case.
    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.

  5. #5
    Hi again, the drugs she is receiving now is called Velcade (Bortezomid) combined with large doses of hydrocortisone and some type of chemo. This as I understand it is common (at least in Sweden) when no more stem cell transplants can be performed. She is doing ok but we donīt know yet how well the treatment is working. She has been in this treatment for about two weeks now.

    Unfortunately she also had a blood clot in her lung which hurts as hell but I hope they can fix that since she got to the hospital in time.

    As always any experience from you guys are welcome
    Born in 1962
    PSA 6.5, free PSA 10% Oct 2014
    10 biopsies taken Oct 2014
    6 biopsies G 3+3
    2 biopsies G 3+4
    T1c
    Total of 30 mm cancer of 130 mm biopsy samples
    da Vinci surgery jan 7th 2015, nerves spared on one side and "almost all" on other side
    Catheter out jan 23
    Feb 2nd, one shield/day almost continent
    March 17 2015 PSA<0.1
    Final stage pT2, no external invasion, no vesicles invasion, no lymph node invasion, small positive margin
    August 24 2015 PSA <0.1
    February 18 2016 PSA <0.1
    September 12 2016 PSA <0.05
    April 14 2017 PSE <0.05
    October 2017 PSA 0.05....
    Jan 2018 PSA 0.05
    Aug 2018 PSA <0.05
    Feb 2019 PSA 0.06

  6. #6
    On the 12th of february my mother passed away, the balancing act of harder and harder side-effects and a worn-out body finally resulted in blood-cloths in her lungs and also a new tumor was find in her bowels. When the treatments were stopped she only lasted for two weeks. Having said this I still would like to say that the treatments she received gave her 15 good years, one so and so and one she probably did not appreciate. I bow to the staff of the hospitals in Örebro and Karlstad Hemathology departments who gave her all this time.
    Born in 1962
    PSA 6.5, free PSA 10% Oct 2014
    10 biopsies taken Oct 2014
    6 biopsies G 3+3
    2 biopsies G 3+4
    T1c
    Total of 30 mm cancer of 130 mm biopsy samples
    da Vinci surgery jan 7th 2015, nerves spared on one side and "almost all" on other side
    Catheter out jan 23
    Feb 2nd, one shield/day almost continent
    March 17 2015 PSA<0.1
    Final stage pT2, no external invasion, no vesicles invasion, no lymph node invasion, small positive margin
    August 24 2015 PSA <0.1
    February 18 2016 PSA <0.1
    September 12 2016 PSA <0.05
    April 14 2017 PSE <0.05
    October 2017 PSA 0.05....
    Jan 2018 PSA 0.05
    Aug 2018 PSA <0.05
    Feb 2019 PSA 0.06

  7. #7
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,219
    So very sorry to hear this. May she rest in peace and may the memory of her love remain forever.
    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.

  8. #8
    Thank You.
    Born in 1962
    PSA 6.5, free PSA 10% Oct 2014
    10 biopsies taken Oct 2014
    6 biopsies G 3+3
    2 biopsies G 3+4
    T1c
    Total of 30 mm cancer of 130 mm biopsy samples
    da Vinci surgery jan 7th 2015, nerves spared on one side and "almost all" on other side
    Catheter out jan 23
    Feb 2nd, one shield/day almost continent
    March 17 2015 PSA<0.1
    Final stage pT2, no external invasion, no vesicles invasion, no lymph node invasion, small positive margin
    August 24 2015 PSA <0.1
    February 18 2016 PSA <0.1
    September 12 2016 PSA <0.05
    April 14 2017 PSE <0.05
    October 2017 PSA 0.05....
    Jan 2018 PSA 0.05
    Aug 2018 PSA <0.05
    Feb 2019 PSA 0.06

 

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