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Thread: Hi all, new here

  1. #1
    Newbie New User
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    Seattle
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    Hi all, new here

    My husband has just been diagnosed with Mesothelioma and looking for some support/advise. I feel so alone.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Pacific NW, USA
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    Very sorry to hear this. Will he be/is he being treated at Seattle Cancer Care Alliance?
    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
    Senior User Dead Man Walking's Avatar
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    May 2017
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    Dear Debbie: Well, welcome to the forum, and you have indeed found a soft place to land. That free-fall feeling you get when you first find out that you or a family member has cancer really sucks. Everyone in here is a cancer survivor or a relative of a survivor, and somebody who has some knowledge or experience with this particular cancer should be along shortly. In the meantime, you can go here for a needed change of scenery: https://www.cancerforums.net/threads...-garden-by-DMW
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 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 Oncologist 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

  4. #4
    Newbie New User
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    Aug 2017
    Location
    seattle
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    Mesothelioma Dx

    Husband just diagnosed, we're devastated. Here for some help, comfort and a shoulder to cry on

  5. #5
    Newbie New User
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    Aug 2017
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    seattle
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    Tried repeatedly to log in as my original post debbie in Seattle, no luck, so I'm now DebbieP

  6. #6
    Newbie New User
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    Aug 2017
    Location
    seattle
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    Doc's want to remove my husband's lung

    My husband was just dx'd with Mesothelioma and the 'plans' are chemo and then remove his left lung. Is this a normal plan? We're new to this and are reeling.
    Also, anyone ever get a second opinion from another doc? How about Mayo Clinic?
    It bothers me that these doc's are just saying, "here's the plan", how about our options? Never given options?
    What is the litigation process with this? When I googled Mesothelioma, all there were was pages and pages of attorney's who can 'help' with this. What the heck?

    Thanks all.

  7. #7
    Administrator Top User lisa1962's Avatar
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    Jan 2013
    Location
    new york
    Posts
    3,079
    Hello Debbie and sorry to hear of your husbands diagnosis. Without a doubt, it's a difficult one.

    Now, i personally can not offer much in way of the correct treatment protocol other than perhaps a second opinion is definitly an option especially considering such a difficult surgery as currently suggested.

    I will be honest, our mesothelioma forum is not active. We of course will do our best to help guide you but it will be limited based on our minimal participation with this particular type of cancer.

    I do caution you to be careful in seeking legal council and to not randomly pick one out of the telephone directory. I would make sure you research in great depth for a legal team that will look out for your best interest not one seeking to make a big payday at your expense.

    I sincerely wish you and your husband luck as you have a lot to consider.

    Lisa

  8. #8
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Pacific NW, USA
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    Debbie, I have merged your threads into this one, as it is far easier to keep track of replies that way.

    As I mentioned, I would go nowhere except SCCA in Seattle. Mesothelioma is a difficult diagnosis, we cannot hide that fact. Yet, if removing a lung is thought best to prevent it from spreading, that might be the cost of living, as everything has changed.

    As to functioning with a single lung, men who range all the way from John Wayne to Pope Francis did/do rather well with a single lung.
    Last edited by po18guy; 08-25-2017 at 05:03 AM.
    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.

  9. #9
    Senior User boonems's Avatar
    Join Date
    Aug 2014
    Location
    The Woodlands, Texas
    Posts
    171
    So sorry about your husband. Dad passed away from meso in Nov of 2007.

    His was diagnosed very late and he was in his 70’s so he chose not to do treatment except for draining the fluids. When he needed to be drained more than once a week, he decided to stop all treatment. He peacefully died 3 1/2 months after diagnosis. After a biopsy confirmed meso, we did become part of a litigation, which has helped mom so much with medical bills and retirement.

    It’s been10 years and medical advances are amazing. Hoping they can actually help your husband survive this awful cancer. Sending thoughts and prayers your way.

    Mary
    8/29/14 Sister diagnosed with adenocarcinoma, pancreas body, 2B
    9/8/14 MD Anderson - Pancreatectomy w splenectomy
    12/23/14 Chemo round 2. Platelets 1.5 mil, White Cells 13,000
    1/14/2015 Diagnosed with Paraneoplastic Syndrome
    1/24/2015 Stopped all Chemo (Gem) due to potential kidney failure
    1/30/2015 Admitted to MDA with HUS and other life threatening issues caused by Gemcitabine
    2/20/15 She passed away peacefully from a brain hemmorage. I miss her so much.

 

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