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Thread: Just diagnosed - is there any hope

  1. #1
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    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?

    Jeff

  2. #2
    Super Moderator Top User po18guy's Avatar
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    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.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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) 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 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.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    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.
    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.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
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    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
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    Hi

    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

    http://cancerguide.org/median_not_msg.html

    Good luck
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    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
    http://cancerforums.net/viewtopic.php?t=9620

    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
    Senior User Dead Man Walking's Avatar
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    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 2 pre-op physicals for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy are AML 25% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 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 Wife & I move to LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia"...

  6. #6
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    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?

    Jeff
    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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