EBV+ DLBCL, non germinal center B cell

greentea55
greentea55 Member Posts: 11 Member
edited February 2021 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Does the subject look familar to anyone? Still waiting to see the Doctor

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #2
    Subject

    greentea,

    I assume that by 'Subject,' you are referring to the diagnosis ?    EVB-DLBCL is quite rare; I do not recall others discussing it here previously.   It's response to chemo, according to the NIH, is not very good.   You will need an excellent care team from a premiere cancer center.  This is not one for the local hematologist.....  NIH recommended, in 2016, that patients with this have their doc research any available clinical trials.

  • greentea55
    greentea55 Member Posts: 11 Member
    edited February 2021 #3
    Yes is is rare and quite hard

    Yes is is rare and quite hard to treat, I have a hemotologist that deals with lymphoma at the Simon cancer center. One foot in front of the other, I will try conventional or clinical. thanks for response Max

  • greentea55
    greentea55 Member Posts: 11 Member
    #4
    non-germinal

    Would think more would respond who HAVE non-Germinal DLBCL, like to hear of any different treatments other than R-Chop as new combos are being discovered

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited April 2021 #5
    greentea55 said:

    non-germinal

    Would think more would respond who HAVE non-Germinal DLBCL, like to hear of any different treatments other than R-Chop as new combos are being discovered

    Non-G

    Curiously, greentea, I was diagnosed last year with a profoundly rare condition known as P.T.G.C., 'Partial Transformation of Germinal Centers.'    Benign, but large tumors all over, one the size of a tennis ball (around 6.5 CM) was removed for the biopsy.    NO known treatments or protocols, but some researchers recommend Rituxan, as PTGC has lots of CD-20.

    Please share what you learn in the future, although of course your diagnosis is/was NON-germinal.  NIH reports and journal articles say PTGC is strongly linked to NLPHL and/or follicular NHL, and can easily become either of those lymphomas, or even be one of them AND PTGC at the same time.

    Kermit said 'it aint easy bein green,' and it aint easy being us, either.

     

  • greentea55
    greentea55 Member Posts: 11 Member
    edited April 2021 #6
    Max Former Hodgkins Stage 3 said:

    Non-G

    Curiously, greentea, I was diagnosed last year with a profoundly rare condition known as P.T.G.C., 'Partial Transformation of Germinal Centers.'    Benign, but large tumors all over, one the size of a tennis ball (around 6.5 CM) was removed for the biopsy.    NO known treatments or protocols, but some researchers recommend Rituxan, as PTGC has lots of CD-20.

    Please share what you learn in the future, although of course your diagnosis is/was NON-germinal.  NIH reports and journal articles say PTGC is strongly linked to NLPHL and/or follicular NHL, and can easily become either of those lymphomas, or even be one of them AND PTGC at the same time.

    Kermit said 'it aint easy bein green,' and it aint easy being us, either.

     

    Non_germinal DLBCL

    Finding some are getting treatment other than standard R-Chop, immunochemotherapy regime R-ACVBP compared with R-Chop.

    I am having standard R-Chop

  • Lym999
    Lym999 Member Posts: 43 Member
    #7
    Non-Germinal

    You can have Large Diffuse B-Cell Lymphoma that is the non-germinal type. I had that exact thing and was given Revlimid to go along with the regular R-Chop, making it 2R-Chop. It isn't all that common but does happen in some cases. I haven't seen very many who have had non-germinal Large Diffuse B.   

  • po18guy
    po18guy Member Posts: 1,465 Member
    #8
    Only if it helps

    My first lymphoma did not have EBV involvement, even though it triggered a relapse of mononucleosis. The second lymphoma was a T-Cell variety known as Angioimmunoblastic T-Cell Lymphoma. The tumor cells were EBV+, yet it folded when hit with a novel chemo combination of existing drugs. I know not if it even applies, but a researcher at Fred Hutch conducted a cliniucal trial of four existing drugs which were used in a new (novel) combination. Those drugs were: Treanda (aka Bendamustine), Rituxan, Etoposide and Carboplatin. It is called TREC and is intended to reduce the toxicity of the salvage regimen known as ICE used in relapsed or refractory lymphomas. In my case, Rituxan would not benefit me, as the lymphoma was not of B Lymphocytes. So, I received "TEC." It is completely anecdotal, but it eliminated two dozen tumors, spleen and small intestine lymphoma (stage IV) in only two infusions. And that was two different lymphomas simultaneously, one EBV- and the other EBV+. I would suppose that it is at least worth asking about.

  • greentea55
    greentea55 Member Posts: 11 Member
    #9
    po18guy said:

    Only if it helps

    My first lymphoma did not have EBV involvement, even though it triggered a relapse of mononucleosis. The second lymphoma was a T-Cell variety known as Angioimmunoblastic T-Cell Lymphoma. The tumor cells were EBV+, yet it folded when hit with a novel chemo combination of existing drugs. I know not if it even applies, but a researcher at Fred Hutch conducted a cliniucal trial of four existing drugs which were used in a new (novel) combination. Those drugs were: Treanda (aka Bendamustine), Rituxan, Etoposide and Carboplatin. It is called TREC and is intended to reduce the toxicity of the salvage regimen known as ICE used in relapsed or refractory lymphomas. In my case, Rituxan would not benefit me, as the lymphoma was not of B Lymphocytes. So, I received "TEC." It is completely anecdotal, but it eliminated two dozen tumors, spleen and small intestine lymphoma (stage IV) in only two infusions. And that was two different lymphomas simultaneously, one EBV- and the other EBV+. I would suppose that it is at least worth asking about.

    non-germinal B Cell

    Thank you po18guy for your response, I know there are a lot more of us out there. I would not have known mine was non-germinal if I had not read the biopsy

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