Diffuse Large B-Cell Lymphoma (DLBCL)

catwink22
catwink22 Member Posts: 281
in Lymphoma (Hodgkin and Non-Hodgkin) #1

The complete pathology report is not in, but initital findings are that the Follicular Lymphoma has morphed into an aggressive Diffuse Large B-Cell Lymphoma.  The tumor that I originally thought was 13mm is actually 13cm! yes - OUCH!  I start R-CHOP on Wednesday.  Actually looking forward to doing something and hopefully alleviating some of the pain.  Still need to tell some close family members, not looking forward to that (especially at the Holidays).  I like to stay in my "logical, next-step, focus on today" bubble.  It's easier for me to deal with what I know than what I don't know down the road.

 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    Yes

    cat,

    I'm sorry this bad news struck at this time, but I understand your point about getting with the program.

    Bless your full and complete recovery,

    max

  • Unknown
    Unknown
    edited December 2016 #3
    Sorry

    but DLBCL is curable! Keep us in the loop. I will be thinking of you.

  • catwink22
    catwink22 Member Posts: 281
    edited December 2016 #4
    Max Former Hodgkins Stage 3 said:

    Yes

    cat,

    I'm sorry this bad news struck at this time, but I understand your point about getting with the program.

    Bless your full and complete recovery,

    max

    Unfortunately more bad news.

    Unfortunately more bad news. I now have "Double Hit" Lymphoma. Will not have R-CHOP will be getting Hyper-CVAD. Thank you Max

  • catwink22
    catwink22 Member Posts: 281
    #5
    unknown said:

    Sorry

    but DLBCL is curable! Keep us in the loop. I will be thinking of you.

    Is "Double Hit" also curable?

    Is "Double Hit" also curable? I didn't know any of the NHLs were curable! That is promising thanks for the hope!

  • Unknown
    Unknown
    #6
    catwink22 said:

    Is "Double Hit" also curable?

    Is "Double Hit" also curable? I didn't know any of the NHLs were curable! That is promising thanks for the hope!

    Yes!

    I know several people, including one very close friend, who have been cured of DLBCL. As I understand it, and I hope I am correct here, double hit means you will still have the potential for the FNHL slow growing to come back at some point after your upcoming remission. Could be 1 year or could be 10 or even 20 years. But FNHL is manageable. When I went to my oncologist to start FNHL therapy he told me about his first patient some 26 years earlier, whom he was still treating for FNHL. Yes there is hope and good reason to expect that you will be fine for many years. One of our members, Rocquie, also had a transformation. Hopefully she can offer some advice and encouragement based on her experience. She is more articulate than I so I will defer to her.

    All my best.

  • catwink22
    catwink22 Member Posts: 281
    #7
    Thanks GKH

    Thanks GKH

  • pdxgal
    pdxgal Member Posts: 2
    #8
    Double hit DLBCL

    Hi Catwink22-

    I too had a follicular lymphoma that transformed to a DLBCL (double hit). I am undergoing R-EPOCH, and have completed 3 rounds and have 3 more to go. They are recommending a stem cell transplant at the end of my chemo. How are you doing on Hyper-CVAD?

  • ggraphix
    ggraphix Member Posts: 4
    edited January 2017 #9
    Triple Hit DLBCL

    My husband just finished two rounds of R-CODOX/ M/ IVAC for triple hit DLBCL and will come back next month to have a PET scan.  Transplant has not yet been discussed.

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