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Thread: Introduction and Follicular Lymphoma Question

  1. #41
    Super Moderator Top User po18guy's Avatar
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    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 ("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.

  2. #42
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    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
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    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
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    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!

  5. #45
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    Leg and assorted muscle cramps. Now 1-1/2 weeks post round 3 RCHOP. Feeling pretty good and I remain active, hiking and running/walking hills at about 1/3rd of pre-diagnosis. I've been having leg cramps at night lately and wonder if this is a side effect of my chemo regimen, the Neulasta I'm on--or the cancer itself. I've also noticed some new, mild stabbing muscle pains in my abdomen, ribs, hands, hips. Has anyone else on RCHOP experienced these annoyances?

    Going in for my mid-point scan on Wednesday. Not a PET--just a with-contrast CT to see if the affected nodes have diminished in size/returned to normal. Praying for some good news!

  6. #46
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    Hi, the night cramps and leg pain that goes with them are normal and something I experienced but don't recall the other mild stabbing pains you refer to, is the any tingling or numbness with them? just wondering if it could be some form of neuropathy, but just guessing so could be miles off.
    Good luck with the scan and lets hope for some big improvement

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  7. #47
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    Good report today. Three sessions in, all lymph node areas are responding well to RCHOP. SCV node went from 9mm short axis in July to 4mm now; Retroperitoneal sample nodes went from 14x13mm in July down to 6x5mm now; and mediastinal node samples went from 21x12mm in July, down to 12x6mm now. No new adenopathy anywhere! Three more RCHOP sessions to go. Yahoo!

  8. #48
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    That all sounds positive and should produce the outcome you want, have they discussed the issue re scar tissue from bulky disease and how some may never go?
    Make the next 3 sessions much more tolerable when you know its working, did they show you the scans so you could compare the before and during treatment ones? if not worth asking to see them, I founding seeing the change and some areas becoming disease free as a big positive and much better than just being told.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  9. #49
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    Thanks John, I have not heard of the scar tissue problem. My presentation was not considered bulky; largest nodes were 2.1cm--but there are/were a lot of them. Not sure if CT has an algorithm that calculates total mass. I would think it would be easy for anything with a Z-axis function like computed tomography. In any event, I'll definitely ask my oncologist about this issue when we meet next week. And yes, I'd really like to see the CT with my own eyes. So far, my onco has been really good about letting me do this, e.g. my PET scan, etc. His analysis of my CT was conveyed by phone yesterday, so I didn't get to see it.

    Thanks again,

    Brian

  10. #50
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    Session 4 RCHOP now done. For some reason, this one seems to be dragging me down more than usual. No nausea, just kind of zombie-like state.

    Reviewed my mid-scan with oncologist who is very pleased that lymph nodes have returned to normal sizes and treatment response appears strong. A small amount of concern re a thyroid nodule that was 8mm in July and is now 12mm. It did not light up on my PET scan in July. Also, some minor calcification in coronary arteries that was not there three years ago when I had an angiogram (for chest pain that turned out to be work-stress related).

    Also, my hair is growing back, albeit very slowly. Is this normal? Didn't expect to see hair again until well after treatment was completed.

    Brian

 

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