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Thread: Introduction and Follicular Lymphoma Question

  1. #41
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Pacific NW, USA
    Quote Originally Posted by Ifelloffaladder View Post
    Still obsessing, trying to figure out MYC tranlocation/overexpression and its place in my prognosis--which my oncologist insists is very bright. My hair was down to about 50%, so I buzzed the holdouts a couple hours ago.
    We each form our own survival curves, and contribute to our prognosis. Someone beats every cancer, no matter how bad it is. Aim for that. Your prognosis is leagues ahead of mine, which was 'poor' before it was downgraded several times. I didn't listen!
    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) 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 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.
    08/17 Bone marrow aspiration/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. Two sub-types of lymphoid malignancies and a myeloid malignancy lend a certain symmetry to the journey.

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

  2. #42
    Senior User
    Join Date
    Feb 2011
    Monroe, WA, USA
    The prognosis/survival curves you see published are simply averages from what (sometimes sketchy) data that is available from trials, general statistical compendiums, etc. As POGuy said, you basically make your own curve. When diagnosed, there may be some very general value in seeing a prognosis - but that pretty much flies out the window as soon as you start treatment and begin to see positive results, as you are seeing. Once you head down the treatment path, particularly if you're responding well, the averages don't mean much.

    My FLIPI2 scores prior to treatment showed a less than stellar prognosis, but neither my clinical trial manager, nor my oncologist were terribly concerned about them. With immediate response on the first treatment and continued response clear through to remission, I basically reset all those indicators to zero. Same with your translocations - IF they may have had some statistical value prior to treatment, once you started and started to kill off the lymphoma, the average prognosis associated with that particular genetic property no longer applies to you.
    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. #43
    Newbie Regular User
    Join Date
    Sep 2017
    PNW, US
    Thanks, I understand what you are saying. My FLIPI score prior to starting down this road was good--a single point for stage IIIa. Still, it bothers me that the pathology report simply ruled out "double-hit" via rearrangements (which is good)--but then noted the 2F signal pattern that identifies extra MYC copies on chromosome 8 WITHOUT noting whether Bcl2 was also overexpressed. This, it seems to me, is important. The report did note that both Bcl2 and Bcl6 are present, but makes no mention of their levels and/or frequency. I have to assume that an overexpression of Bcl2 would have been noted.

    Whether or not any of this would make a difference in my therapy, I can't really say. I've been reading some recent reports that indicate CHOP patients do better (minus the Rituxan) with concomitant MYC and Bcl2 overexpression for unknown reasons--but the jury is still out. In any event, I have no reason to doubt that my oncology team has taken all this into consideration. Just wondering--and maybe you or Po18 can answer this--what happens to the original pathology sample once it's analyzed? It is preserved for future use? In other words, is it possible I could request (or demand) a reevaluation of my sample? Or is that material now discarded?

    Anyway, hope you're not thinking I'm taking this too dark. I really do appreciate the positive advice. I'm just approaching my nadir post-Round2, I suppose. Looking at lymphoma/cancer prognostics--"statistics"--and knowing there is or was a real human being who now represents a number is just awful. Wife says I need to knock it off--but I just need all the facts because I'm a little OCD.

  4. #44
    Senior User
    Join Date
    Feb 2011
    Monroe, WA, USA
    I don't think you're overthinking this, really. Seems like you have a very analytical mind, as do I and many of the science-types on the forum. I like to know everything I can about my situation (I've just finished drilling holes in the roof of our brand-new RV to mount solar panels. Try to imagine the number of hours that went into studying blueprints, etc. before that first hole!!). At some point though, you just have to drill the damned hole...

    Your sample should be retained for future examination - more than likely in the form of preserved microscope slides. May even be some high-resolution imagery of it (which would be cool to look at, I'm sure.)

    And, I see your point on the statistics. I find myself way out on the leading edge of the curve as far as successful treatment goes, but there are other poor folks on the trailing edge of that same curve, and I feel badly for them.
    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!


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