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Thread: Anyone else have DLBCL with double expression?

  1. #11
    Experienced User
    Join Date
    Apr 2015
    Location
    California
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    Quote Originally Posted by Betsometer View Post
    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.
    I don't know the entirety of your story, but if your doctor doesn't think sub-type matters, I would get a second opinion. Studies have shown that ACB and GCB are different enough to where their prognosis varies greatly using specific drugs for their subtype. For example, people with GCB subtype respond extremely well to R-EPOCH (DA) while ACB shows no real improvement and needs the addition of different drugs. I
    Age 21 at diagnosis with DLBCL Stage 4 GCB subtype
    March 2nd 2015: 6 cycles of Dose Adjusted EPOCH + neupogen shots +6 intrathecal chemotherapy for prevention of CNS relapse due to skull-base tumor
    Currently completed all 6 cycles! - 06/26/2015 / 1 more intrathecal and pet ct on 7/24/2015
    Stage 1a melanoma excised with 1cm margins on 8/14/2015
    "No residual melanoma found" on 8/22/2015
    In complete remission, chest mass continues to shrink on it's own 9/29/2015

  2. #12
    Hello One day at a time.
    I was searching for someone who has the same type of lymphoma that my husband was just diagnosed with. DLBCL double expressing. He will be starting the R-EP-OCH treatment for 6-8 months and within each month he will have a 5 day stay in the hospital. We would just like to hear from someone who has gone thru this same thing.
    I have never entered a forum before so i apologize if this is past the allotted time to post on a thread. You are the first person that I have found that seems to have the same type.
    If you have anything you would like to share we would much appreciate it.

  3. #13
    Senior User
    Join Date
    Feb 2011
    Location
    Monroe, WA, USA
    Posts
    471
    Hi!
    Sorry to learn of your husband's diagnosis, and welcome to the forum. You'll find loads of support and suggestions here. I would recommend that you start a new thread that describes your own situation - this thread has been inactive for quite a while.
    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!

  4. #14
    Regular User
    Join Date
    Oct 2015
    Location
    Texas
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    21
    Quote Originally Posted by *Fightforlife* View Post
    Hello One day at a time.
    I was searching for someone who has the same type of lymphoma that my husband was just diagnosed with. DLBCL double expressing. He will be starting the R-EP-OCH treatment for 6-8 months and within each month he will have a 5 day stay in the hospital. We would just like to hear from someone who has gone thru this same thing.
    I have never entered a forum before so i apologize if this is past the allotted time to post on a thread. You are the first person that I have found that seems to have the same type.
    If you have anything you would like to share we would much appreciate it.
    I have DLBCL with double expression and ABC sub-type. Double expression can be due to over expression by any of the two proteins. Depending upon which two proteins are over expressed and presence /absence of a few other proteins in the tumor cells, the outcome can be quite different. So, really comparing two cases may be difficult if you are looking for a definitive outcome. Good luck with the treatment for your husband.

    Best
    Male: 53 yrs
    July-2015 diagnosed with NHL DLBCL Stage IV
    Extranodel involvement - Knees; elbows & knuckle joints
    Completed six cycles of DA-RECHOP on 11/15/15
    Received Intrathecal MTX/Cytarabine - prophylaxis with DA-RECHOP
    PET/CT scan on 11/25/15 - clear
    Two cycles of high dose MTX completed on 12/20/15 - prophylaxis
    Jan-2016 Skin lesions on left knee (site of previous lymphoma)
    Skin Biopsy - Negative Suspected Dermatitis issue
    PET/CT scan on 01/22/2016 - clear except for inflammation site on left knee
    Excisional Biopsy 01/27/2016 - Confirmed relapse of DLBCL or it never went away
    Brain MRI on 02/24/2016 - Negative So I qualify for carT cell trial
    PET/CT Scan on 3/14/2016 - Confirms extra-nodal involvement in left leg
    carT cell infusion 3/2016
    Failed carT cell trial Started immunomodulatory oral drug 5/2016
    Started mobilization Chemo in Aug-16 (needed Mozobil to mobilize CD34+ cells in peripheral blood)
    Auto SCT in Sept-16

  5. #15
    Regular User
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    Sep 2017
    Location
    PNW, US
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    1 Day,

    I too have a pathology report with an overexpression of MYC--in 74% of observed nuclei. No mention of Bcl2--other than it is "present"--along with Bcl6. I'm curious if the very presence of Bcl2 is the same thing as an overexpression? After all, aren't most lymphomas a result of Bcl2 overexpressions/translocations? This is a very confusing. My diagnosis is Follicular Center Origin--but with many areas showing diffuse architecture and "highly concerning" for DLBCL. Hoping you have had a good outcome and can provide some insight.

    Best,

    Brian

  6. #16
    Regular User
    Join Date
    Sep 2017
    Location
    PNW, US
    Posts
    34
    My oncologist discussed double hit vs double expression and extra copies of MYC with University of Washington pathologists who, in turn, reevaluated my pathology at his request. While they again ruled out MYC rearrangement, they noted that I show three copies of MYC on chromosome 8. Despite recent literature to the contrary, UW pathologists at this time do not believe that extra copies of MYC in any way represent an adverse prognosis and reject recent studies that concluded a poor outcome for a number of reasons that I am still unclear about. My guess is that most of the "double expression = double hit" studies were done with groups over-represented by poor IPI, FLIPI,FLIPI2 scores and, maybe, denovo DLBCL--where mine is Follicular grade 1-3a and <50% diffuse with possible transformation to DLBCL.
    Anyway, the fact that my oncologist went extra steps to address my concerns is reassuring--even if I remain a bit more concerned than he is.

    I finished RCHOP round 3 (of six) yesterday and feel fine today--but my Neulasta auto-injector kicks in tonight and I'm guessing this is going to knock me back a bit. I have a mid-point CT scheduled for next week and am hoping to see dramatic reduction or absence of lymphandopathy in my chest, abdomen, and left shoulder. This should put to rest my concerns and validate my oncologist's confidence in my recovery.

 

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