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Thread: Husband with MM

  1. #1
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    Husband with MM

    My husband was diagnosed with MM in July 2011 at the age of 44. He had pain in his leg and they found a tumor in his tibia. They began chemo and dexamethasone to reduce the size of the tumor since it had fractured parts of his bone then had surgery. Completed radiation then back on chemo /dex. Had a stem cell transplant in 2012 which only gave him 1 year which was considered a failure. Changed chemo to Revlimid and kept him on net he dex but he became very anemic and needed numerous blood rransfusions, even at the lowest dosge. Develepoed pain in his other leg and had surgery and radiation in 2013. Changed his chemo again a couple of months go to Pomalyst and kept the dex. He is so fatigued and in so much pain but the doctors say his numbers look good. I don't understand because he keeps saying he feels like he is going downhill. After 4 years of fighting this with no real remission I am just at my wits end on how to help him. I wish he doctors would be more honest. He can't even walk to the kitchen without being completely out of breath, is dizzy every time he stands up and sleeps all the time.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Welcome! However, I am dismayed to hear about the struggles that your husband has. I moved your post to its own thread, as it should receive more replies that way. Which type of transplant did he have?
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  3. #3
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    Thanks so much! I have never been on a forum or any myeloma group. Maybe I should have a while ago but...
    He underwent an autogulous stem cell transplant but the recovery time was not worth he extra months he received of no treatment.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    MM is a tough one. And, in blood cancers, autologous transplants do have a certain relapse rate. Has anyone spoken of an allogeneic (donor) transplant? He is young enough, but there are many qualifying conditions to consider, as well as a known mortality rate.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  5. #5
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    Yes it was discussed but they ruled it out for him. He has IGD myeloma which I understand is the rarest and one of the more aggressive.They took enough stem cells to do two transplants but I don't think he really wants to go thru that again, especially in light of the last results. Our next option is to see if he qualifies for a clinic study but that requires constant bone biopsies and my husband has an extreme phobia of needles...believe it or not. And that fear has not diminished in he least over the last 4 years. All statistics show a 5 year mortality rate and we are in year 4 so I am getting nervous.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    They can sedate him as needed for those biopsies. I know that phobias can be oppressive, but this is life-threatening! If was afraid of needles, I assure you that my wife would have me on a gurney in soft restraints with a sock stuffed in my mouth! My last BMB was a piece of cake. As to survival, at diagnosis in 2008, my T-Cell Lymphoma (AITL) had a median survival of two years. If I live to the end of April, I will have 7 years into this. I relapsed immediately after high-dose chemo involving 8 drugs, and was scheduled for palliative care only. I am here today solely because of a clinical trial which appeared at that exact moment. Otherwise, there is little doubt that I would have expired in 2009.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  7. #7
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    Jan 2013
    Location
    Lake Jackson, Texas
    Posts
    1,491
    cz2448, my neighbor just had two bone biopsies under sedation. After her second transplant she is now at 20%, but is functioning very well. One could not even guess that she has MM. Prayers for all on this journey.

    Amanda
    Caregiver to son, 32 , 5/18/2011 Stage IV
    Sigmoid colectomy , liver biopsy 5/18/2011
    6cm sigmoid tumor, low grade (well-to-mod. differentiated)
    6 of 33 lymph nodes +
    FOLFOX /Avastin 6/2011-8/2011
    Rt hepatectomy on 9/20/2011---70%
    2012
    FOLFOX /Avastin 4 cycles 1/31 stopped-low platelets
    3/5 CT clear
    4/ PET scan showed peritoneal mets
    4/24 splenic embolization for low platelets
    FOLFIRI/ Avastin 5/12-8/12
    Consult for HIPEC 8/12 denied---tumors too many, possibly in ureter.
    5FU/ Avastin 8/2012-2/2013
    12/5/12 scan tumors stable
    12/12 aranespt
    2013
    3/5 tumor progression in abdomin
    Restart FOLFIRI/ Avastin with lower dose of Irinotecan 3/11-3/25
    nuelasta shots
    ER - bowel obstruction 4/4
    Port removed 4/12
    Port replaced 5/9
    ER 30 hrs
    Erbitux in, Irinotecan lowered 5/20 & 6/17
    9/17scan indicates stable
    9/18-27 & 10/7-11 small bowel obst.
    Erbitux & Irinotecan 11/5, 12/2
    Bowel obst. 12/31
    2014
    1/8 urether stent
    1/17 Hospice
    3/27 started his heavenly journey

  8. #8
    Hi cz2448

    I am so very sorry you are both having to deal with this. My Mil was diagnosed in late 2013.


    I understand. The hardest part for the rest of us is not being able to do anything to help or make it better. Hang in there and do the best you can. (((hugs)))
    I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing.

    Only I will remain.

 

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