Treated for follicular 3B in 2017, now dlbcl

ilgalante
ilgalante CSN Member Posts: 3 *
in Lymphoma (Hodgkin and Non-Hodgkin) #1

hello,

my husband had aggressive follicular lymphoma 3b in 2017 which he was treated with rchop. Now, he was just diagnosed with DLBCL which they believe is closely related to the one he had in 2017.
im just looking for similar experiences. We have two very little kids and I am currently pregnant, so we are worried sick right now

Comments

  • PBL
    PBL CSN Member Posts: 393 Member
    edited August 8 #2

    Hello ilgalante,

    Sorry to read your news. Transformation of Follicular Lymphoma to an aggressive lymphoma such as DLBCL is known to occur at an approximate rate of 3%/year - and of course, this is an event which we FL patients all dread. Luckily, the aggressive component is likely to be wiped out clean, and there are plenty of treatment options available, including CAR-T cell therapy.

    If you are in the U.S. and not already being seen at one, I strongly suggest seeking advice from a hematologist - preferably one specializing in FL and DLBCL - at one of the NCI-Designated Cancer Centers (https://www.cancer.gov/research/infrastructure/cancer-centers/find), or if not in the U.S., at a university hospital. This is where you are most likely to find the most competent and up-to-date doctors.

    I hope this helps.

    Kind regards,

    PBL

  • ilgalante
    ilgalante CSN Member Posts: 3 *
    #3
    https://csn.cancer.org/discussion/comment/1723967#Comment_1723967

    thank you for your response.
    he had follicular 3b which was treated with rchop in 2017 and were told it would be cured. We never saw any evidence of follicular since 2017 so I’m not sure how it transformed when it hasn’t been there. Now he needs stem cell for DLBCL

  • PBL
    PBL CSN Member Posts: 393 Member
    edited August 8 #4

    ilgalante,

    Due to its indolent nature, Follicular Lymphoma doesn't generally "go away", especially when diagnosed at an advanced stage; that's why we get long-term follow-up. Even though your husband was put into remission (which does not mean that his cancer was completely eradicated) with R-CHOP, there very likely remained cancer cells at a microscopic level, which then resumed their natural course - and eventually transformed. Please look up a specialist, if not to change doctors, at least to get a second opinion. Doctors are able to work together, and a top-notch specialist may guide your husband's doctor, if that is what you both wish.

  • mossback99
    mossback99 CSN Member Posts: 51 Member
    #5

    Very sorry to hear this. My best wishes to you guys.

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