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Thread: Just diagnosed - is there any hope

  1. #1
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    Apr 2017

    Just diagnosed - is there any hope

    I am struggling to come to terms with my diagnosis and in the coming week(s) I guess I will be told what treatment I may or may not be a candidate for.

    I feel like there is no hope and I suppose like everyone who is diagnosed, after the shock is the burning question of time - how much - is there hope?

    Does anyone else feel like this?


  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Sorry to hear of this. Has the biopsy sample been reviewed by a second pathology laboratory for confirmation of the diagnosis? Due to the challenges posed by mesothelioma, I would suggest making enquiry into clinical trials that might be available.
    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
    Newbie New User
    Join Date
    Jun 2017
    I'm sorry to hear your diagnosis. My father was just diagnosed in April also. Initially I had no hope but the oncologist seemed very positive that it could be managed and he could have a few quality years. Now two weeks into his first dose of chemo he is so very sick and I'm starting to wonder if our hopes are unrealistic. I'd like to hear how you are doing and your experiences since your diagnosis. Best wishes to you.

  4. #4
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Blog Entries

    Of course there is hope...there always is.

    I am putting in a link written by Stephen J Gould a famous biologist who was diagnosed with abdominal mesothelioma. Please read it. Stephen went into remission and survived for another 20 years after his diagnosis


    Good luck
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  5. #5
    The 1st dose of chemo can make you feel like a home-made, half baked, 3 day old, and thoroughly awful **** sandwich. To begin with, being sick from chemo and being sick from cancer are two diametrically opposed ways of feeling awful, so DON'T get those two mixed up in your head or in your heart! It's WAAAYYY too early to jump to conclusions. The thing that you CAN start obsessing about is how do you and your father maximize the time you two have together?? THAT is worthy of spending some time on, and beyond that perhaps thinking about making some life changes, and what you could financially afford to improve the time that is left. Your life as you lived it just crashed and burned and will never come back, but you're both still here and alive, so you might as well "LET IT GO" and move forward, and don't look back over your shoulder. EVER!! The Stephen J Gould piece is really worth reading several times, and as you go through it start thinking about how you could make these concepts and attitudes apply to YOU in your current situation. The beginning is the worst, but as time goes on you can begin to get a handle on things, and if the situation just stabilizes and stays as it is, that's ALREADY a sign that the end may not be just around the corner. The point here is to create an acceptable QUALITY OF LIFE for the two of you that will allow you and your dad to move forward for as long as you can.

    And yes, this forum has people in it that should have gone by-by a long time ago, and if po18guy and I wanted to we could have a marvelous debate about who "should be deader by now", except neither of us gives damn any more, and we have our lives to live and people to talk to.

    So, welcome to the board, get yourself sorted out, and start figuring out what kind of "quality of life" that you want to go after with your dad.

    Good luck, and there's normally somebody around who has traversed some of the terrain that is in front of you, so ask questions and get help!!
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 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 Onc 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
    12/4/17 Diagnosis: Uncontrolled refractory AML

  6. #6
    Newbie New User
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    Jun 2017
    Quote Originally Posted by islandsjeff View Post
    I am struggling to come to terms with my diagnosis and in the coming week(s) I guess I will be told what treatment I may or may not be a candidate for.

    I feel like there is no hope and I suppose like everyone who is diagnosed, after the shock is the burning question of time - how much - is there hope?

    Does anyone else feel like this?

    The time you can/will survive depends on the type/subtype of the mesothelioma, how early it is caught, etc. There is a lot to find out before you decide you are at death's door. My husband is at 2.5 years since diagnosis, just finished his 2nd chemo and is doing better than he was a year ago. One of the most important things is to keep a positive attitude as much as you can, there are times you can't do it but as much as you can.


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