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Thread: Follicular Lymphoma

  1. #11
    Quote Originally Posted by po18guy View Post
    There are valid arguments either way. Although watch and wait strikes one as doing nothing, it is considered active surveillance. The blessing in this is that new drugs and treatment regimens are being developed while you watch and wait. Thus, any future treatment will very likely be more effective and less toxic.
    Thank you, I have been told my someone on the know that two new drugs should be available in about two years

  2. #12
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    Quote Originally Posted by Down Under View Post
    Thank you, I have been told my someone on the know that two new drugs should be available in about two years
    New drugs - particularly in clinical trials - are coming out all the time! There will likely be several new therapies released long before two years are up.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    12/2016: Remission continues (>5 years) Down to one checkup/year!

  3. #13
    The Fatigue is really causing issues now. I was told there is treatment for it which I believe is to start treatment ?

    Would this help ? Also would I be causing issues long term starting treatment to help with the fatigue as opposed to being on a watch and wait and saving treatment for a time the disisease worsens ?

    Any advice would be appreciated.

    Thank you

  4. #14
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    Monroe, WA, USA
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    Treatment won't change if you wait until it worsens, and besides, you can't really predict in a meaningful way what the future may bring, with regard to prognosis. Fatigue from disease is definitely a side effect, and is also an indication that the disease is becoming more pronounced. Watching and waiting until you're really sick is not a very good option - you need to consider your quality of life now - the one that you're currently experiencing - against the "what ifs" of the future. Further, starting treatment now vs. starting treatment in two months will have no significant impact on the eventual outcome of the disease. If it's going to relapse, it's going to do that with little regard as to when you started treatment, although the choice of what kind of treatment may play a huge role in relapse vs. remission.

    Many people with your symptoms feel immediate improvement upon starting treatment, even though fatigue is also one of the side effects of treatment.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    12/2016: Remission continues (>5 years) Down to one checkup/year!

  5. #15
    Hi Defens,

    Thank you , really appreciate your advice. Your comment re the type of treatment is interesting. I have read so much and watched many experts on Podcasts and They all have differing opinions on when to start treatment and what drugs to use for the treatment. There are so many drugs they can use in different combinations.

    I suppose all I can do is leave those choices to my Specialists as they are the expert.

    Thank you

  6. #16
    Just wondering if a bit of a persistent Cough I have developed has anything to do with my FL Stage 3.

  7. #17
    Super Moderator Top User po18guy's Avatar
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    Pacific NW, USA
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    Quote Originally Posted by Down Under View Post
    Just wondering if a bit of a persistent Cough I have developed has anything to do with my FL Stage 3.
    I would say that it is likely, being caused by the release of cytokines, which are proteins that the tumor cells release. This would be another reason that might lean in the direction of earlier treatment.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    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
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 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 type of 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 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 those drugs 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

  8. #18
    Quote Originally Posted by po18guy View Post
    I would say that it is likely, being caused by the release of cytokines, which are proteins that the tumor cells release. This would be another reason that might lean in the direction of earlier treatment.

    Thank you....I've never heard of Cytokines. Mind you I am new to this whole issue and no doubt we all learn along the way of illness and treatment . It's a sort of ticklish cough deep back of throat but no other symptoms you would associate with a cold or flu

  9. #19
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Location
    Pacific NW, USA
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    Cytokines can be both good and bad. They are very important in cell signalling as far as immune response goes. The Neupogen/Neulasta injections we received to stimulate our marrow to produce additional white blood cells when we are neutropenic are a form of cytokine. Yet, there are probably innumerable types of cytokines, and some cause immune response such as inflammation or coughing.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    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
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 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 type of 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 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 those drugs 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

  10. #20
    Quote Originally Posted by po18guy View Post
    Cytokines can be both good and bad. They are very important in cell signalling as far as immune response goes. The Neupogen/Neulasta injections we received to stimulate our marrow to produce additional white blood cells when we are neutropenic are a form of cytokine. Yet, there are probably innumerable types of cytokines, and some cause immune response such as inflammation or coughing.
    Thank you, really appreciate you're feedback ��

 

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