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Has anyone Had "Non Germinal" Large Diffuse B-Cell Lymphoma

Lym999
Lym999 CSN Member Posts: 43 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Has anyone else had Large Diffuse B-cell Lymphoma that was dianosed as "Non-Germinal" I know it is rare compared to Germinal and I am curious if anyone else had that? I had to take another drug Revlimid for ten days after each of my six treatments to compensate for it being Non-Germinal. This is why they called my treatment 2 R-Chop than just R-chop. I know before Revilmid non-germinal people had a worse prognosis than others with Germinal. If anyone experienced this or knows anything about it I would love to hear from you.

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 CSN Member Posts: 3,831 Member
    #2
    Links

    This article has a multitude of embedded articles concerning non-germinal large B disease.    

    To open link, HIGHLIGHT the link, then click on "Go to......."

     

    https://pubmed.ncbi.nlm.nih.gov/30407302/

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 CSN Member Posts: 3,831 Member
    #3
    Max Former Hodgkins Stage 3 said:

    Links

    This article has a multitude of embedded articles concerning non-germinal large B disease.    

    To open link, HIGHLIGHT the link, then click on "Go to......."

     

    https://pubmed.ncbi.nlm.nih.gov/30407302/

    Particulars

    Lym,

    It is natural and beneficial to research the particulars of a diagnosis, but too much focus on 'my strain is WORSE,' or 'my strain is better' is probably mis-spent emotional energy.  All of these liklihoods and generalities are just that: statistically common trends. What a given individual will experience is unknowable in advance.   

    Non-germinal is, statistically, similiar to having T-cell disease: quite RARE and without definitive protocols to treat.   The most efficient focus in a case like that is to get a hematologist who is subspecialized specifically in non-germinal disease.   This will be more expensive, which is prohibitive for some people, and some insurances will or will not pay a differential to see such an authority, but doing so is recommended in a case such as yours.   I hope you have the resources to do so,

    max

     

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  • Lym999
    Lym999 CSN Member Posts: 43 Member
    edited September 2020 #4
    Max Former Hodgkins Stage 3 said:

    Particulars

    Lym,

    It is natural and beneficial to research the particulars of a diagnosis, but too much focus on 'my strain is WORSE,' or 'my strain is better' is probably mis-spent emotional energy.  All of these liklihoods and generalities are just that: statistically common trends. What a given individual will experience is unknowable in advance.   

    Non-germinal is, statistically, similiar to having T-cell disease: quite RARE and without definitive protocols to treat.   The most efficient focus in a case like that is to get a hematologist who is subspecialized specifically in non-germinal disease.   This will be more expensive, which is prohibitive for some people, and some insurances will or will not pay a differential to see such an authority, but doing so is recommended in a case such as yours.   I hope you have the resources to do so,

    max

     

    Non Germinal

    Thanks, Max, This is why I had to take 10 days of Revlimid after each chemo treatment. It used to be a worse prognosis with Non-Germinal, but with the Revlimid, it makes my prognosis as good or even better than ones who have just Germinal. I am curious if there are any others out there who had Non-Germinal Diffused Large B-Cell. 

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  • greentea55
    greentea55 CSN Member Posts: 11 Member
    #5
    Lym999 said:

    Non Germinal

    Thanks, Max, This is why I had to take 10 days of Revlimid after each chemo treatment. It used to be a worse prognosis with Non-Germinal, but with the Revlimid, it makes my prognosis as good or even better than ones who have just Germinal. I am curious if there are any others out there who had Non-Germinal Diffused Large B-Cell. 

    non germinal

    Hi Lym, My biopsy shows DLBCL ,non germical center B cell like type, also EBV positive, I start my journey March 1, no idea what treatment will be. I am 77

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