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Thread: Anyone else have DLBCL with double expression?

  1. #1

    Anyone else have DLBCL with double expression?

    I am a 59 year old otherwise healthy active woman, and I was diagnosed with Diffuse large B-cell lymphoma in March of this year after finding a lump in my neck. Things happened quickly after that with all the various diagnostic tests. I had a bone marrow biopsy (positive for lymphoma) and my 1st PET/CT scan showed I had cancerous nodes in several locations in my neck, chest, and groin, and my spleen was enlarged. I was Stage 4-B-S, the B for night sweats, and the S for spleen involvement. I completed 2 rounds of r-CHOP. I then had a repeat PET/CT scan which thankfully showed no evidence of disease. Yay! However, right around that time my husband and I went for a 2nd opinion, and that doctor ordered new pathology and found that I have a double expression of the proteins, MYC and BCL2. This is not the same as double-hit, although they are both extremely aggressive sub-types. They also found that my cancer is Activated B-cell origin, not germinal center origin. So my chemo protocol was changed to r-EPOCH, and I have now completed 2 rounds of that. I have handled the treatments well so far, and I have 2 more to go (for a total of 6 chemo rounds, every 3 weeks). I have 5 day inpatient stays at the hospital each time. I go back in this Tuesday, and my dose will be adjusted 20% higher this time. Typically when I come home from the hospital I am quite tired the first week, but then the second week I get my energy back. I hope this pattern continues. For the past week I have been feeling really well, and am so thankful that I haven't suffered from too many side effects to date. No mouth sores, nausea or diarrhea. I had a repeat bone marrow biopsy after round 3, and it came back negative for lymphoma. Also good! I completed a stem cell harvest last week, as this DLBCL sub-type is very aggressive. My stem cells will be frozen and available should I have a relapse. I am hoping that they never have to open that freezer for me! I am trying my best to focus on the positive, and my friends and family are providing me with so much love and support to keep me strong. I am curious to hear from anyone else with double-expression DLBCL to hear if your treatment plan is any different. I have read about a drug ibrutinib that is showing promise for B-cell malignancies, but I think it is still only used for relapse patients, not a front-line drug for initial treatment. The learning curve is certainly steep. Four months ago I knew nothing about lymphoma. Everything is different now!

  2. #2
    Administrator Top User Kermica's Avatar
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    Hi there 1 day and welcome to the place no one wants to be but many come to value. I moved your post over to the Lymphoma Board thinking you would get more (and more useful) responses than you would on the General Board and am a biot surprised that folks didn't jump in right away but weekends are sometimes a bit slow around here.

    I have to say that I am not familiar with the intricacies of double expression but it is a great example of how our doctors and researchers continue to refine their understanding of these diseases in order to provide the best possible outcomes for us.

    Regarding ibrutinib, my oncologist and I had a conversation about that on Friday last as I appear to be recurrent once again and we were discussing treatment options should that be confirmed. The current status of ibrutinib is that it is approved for CLL and mantle cell lymphoma at this point but not for other types of either leukemia or lymphoma. The trials are ongoing and the results in hand have been put forward for approval but that is still pending from the FDA.

    Again, welcome, though I wish you didn't have reason to be here. I am confident that others will be stopping by to introduce themselves and to offer support. We have quite a few DLBCL veterans here, though I don't know if any were double expression or not. Good luck with the rest of your treatments.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Pacific NW, USA
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    Sorry to welcome you under these circumstances, but welcome you are! I have something similar, but in the T-Cell world. In my case, this has been going on for seven years and we have managed to chase it away several times. However, mine also has developed at least two sub-clones with differing mutations. I am at the point now where I am scheduled for a tandem (auto + mini-allo) transplant, as we have basically run out of lymphoma drugs.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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 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 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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them 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

  4. #4
    Senior User
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    Apr 2012
    Location
    Maine, USA
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    104
    Hi there. Im sorry to hear about your diagnosis. I am a DLBCL patient and while they(dana farber and nih) couldn't find double expression (looked for myc many times) i still have a very aggressive and unusual type of lymphoma. You can read my signature to see where I've been. Its almost 4 years since diagnosis and my initial prognosis was not good. At the moment I am in "remission" and have been since November last year. As part of my treatment I took Ibrutinib for a few months. Its questionable if it was responsible for diminishing my disease BUT all signs did point in that direction. At NIH it has shown great promise for folks with DLBCL. Coincidentally, im at nih right now for my skin gvhd and they want to use ibrutinib to help treat it. Lots if the protein kinase inhibitor drugs have varied usages and results.

    What you'll find is that its trial and error. Everyone is different. So while the heading for our disease may be the same in reality they could be entirely different birds.

    You sound really strong and already informed. Keep that up! Go with your gut. And dont pay attention to the odds.

    Blessings to you and your family.

    Mary

  5. #5
    Thank you Kermica for your helpful reply and moving my post. I had a little trouble figuring out how to get it on the Lymphoma board. Also, I tried to post all the bio info. at the bottom of my post (info re. my DLBCL diagnosis, etc.). I typed it in on my profile page, but I must have put it in the wrong spot as I don't see it here. Please let me know where I go to do that.

    I see you have had quite a journey. All the best and hopefully they find a next step that will help you. Science and doctors are pretty amazing!
    3/11/15, diagnosed DLBCL, multiple nodes, spleen enlarged, bone marrow involved
    Stage 4-B-S
    3/24/15, started r-CHOP
    4/24/15, 2nd opinion, new pathology results, "double expression" of MYC & BCL2,
    activated B-cell origin,
    switched to r-EPOCH for remaining 4 chemo cycles, inpatient 5 day hospital stays.
    5/1/15, after 2 r-CHOP cycles, PET/CT NED
    5/21/15, after 2 r-CHOP's and 1st r-EPOCH, bone marrow biopsy repeated, NED
    6/16/15, start of chemo #5 (3rd r-EPOCH), 5 days in hospital
    Chemo #6 0f 6 (4th r-EPOCH) in July.

  6. #6
    Ahhh! Sorry, ignore earlier request about my bio Kermica - I see it appeared when I replied to you.
    3/11/15, diagnosed DLBCL, multiple nodes, spleen enlarged, bone marrow involved
    Stage 4-B-S
    3/24/15, started r-CHOP
    4/24/15, 2nd opinion, new pathology results, "double expression" of MYC & BCL2,
    activated B-cell origin,
    switched to r-EPOCH for remaining 4 chemo cycles, inpatient 5 day hospital stays.
    5/1/15, after 2 r-CHOP cycles, PET/CT NED
    5/21/15, after 2 r-CHOP's and 1st r-EPOCH, bone marrow biopsy repeated, NED
    6/16/15, start of chemo #5 (3rd r-EPOCH), 5 days in hospital
    Chemo #6 0f 6 (4th r-EPOCH) in July.

  7. #7
    Hi po18guy,

    Thanks for your welcome and reply. That is quite a journey you have had all these years. You are clearly a tough cookie to handle all that! All the best with the tandem transplant. I'm sure it's not an easy experience but I gather could have amazing results.

    I am happy to have my stem cells frozen in case of a relapse. The harvest was last week and went really well - done in one day. Everyone keep s saying to me, don't even think of a relapse, your scans are clear. However, with these super aggressive sub-types it's hard to not think about it. I know that I am in good hands and if the beast reappears my doctors will guide me to the next steps. In addition to a auto-transplant, I am hopeful that I could join a clinical trial with Ibrutinib if needed.

    All the best.
    3/11/15, diagnosed DLBCL, multiple nodes, spleen enlarged, bone marrow involved
    Stage 4-B-S
    3/24/15, started r-CHOP
    4/24/15, 2nd opinion, new pathology results, "double expression" of MYC & BCL2,
    activated B-cell origin,
    switched to r-EPOCH for remaining 4 chemo cycles, inpatient 5 day hospital stays.
    5/1/15, after 2 r-CHOP cycles, PET/CT NED
    5/21/15, after 2 r-CHOP's and 1st r-EPOCH, bone marrow biopsy repeated, NED
    6/16/15, start of chemo #5 (3rd r-EPOCH), 5 days in hospital
    Chemo #6 0f 6 (4th r-EPOCH) in July.

  8. #8
    Dear Mary Z,

    Thanks for your reply and helpful info. So glad you are in remission, and here's hoping the good folk at NIH will get your skin gvhd under control. I appreciate your comment, "don't pay attention to the odds"! Excellent - that's my new mantra of the day!

    All the best to you.
    3/11/15, diagnosed DLBCL, multiple nodes, spleen enlarged, bone marrow involved
    Stage 4-B-S
    3/24/15, started r-CHOP
    4/24/15, 2nd opinion, new pathology results, "double expression" of MYC & BCL2,
    activated B-cell origin,
    switched to r-EPOCH for remaining 4 chemo cycles, inpatient 5 day hospital stays.
    5/1/15, after 2 r-CHOP cycles, PET/CT NED
    5/21/15, after 2 r-CHOP's and 1st r-EPOCH, bone marrow biopsy repeated, NED
    6/16/15, start of chemo #5 (3rd r-EPOCH), 5 days in hospital
    Chemo #6 0f 6 (4th r-EPOCH) in July.

  9. #9
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,124
    The take-home message here is that you can do this. At least in the case of T-Cell lymphomas, a transplant once the patient is in first remission after primary therapy may be the best chance at a permanent remission. After primary (induction) therapy, I was not in remission long enough to collect my cells and transplant. Thus, we had to take a different path of repetitively harassing the cancer into remission as it relapsed. The latest episode provided some great results, but the time has come to nuke it as we have exhausted nearly all lymphoma drugs.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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 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 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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them 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. #10
    Newbie New User
    Join Date
    Sep 2015
    Posts
    1

    ABC vs. GBC nHL

    [QUOTE=However, right around that time my husband and I went for a 2nd opinion, and that doctor ordered new pathology and found that I have a double expression of the proteins, MYC and BCL2. This is not the same as double-hit, although they are both extremely aggressive sub-types. They also found that my cancer is Activated B-cell origin, not germinal center origin. [/QUOTE]

    My mother was diagnosed with DLBCL and is now looking into clinical trials. I am trying to help evaluate which would be the best one, and I would like to know if hers is ABC or GBC. When I asked the onocologist if her sub-type was GBC (what I suspected), he replied that it didn't really matter at this point. So I would be interested to know how your doctor determined the subtype. Also, my mom's pathology report (FISH results) listed both BCL2 and BCL6, but nothing about MYC.

 

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