B-PLL/DLBCL

[Phs2385]

Hi Everyone,

My dad was on obinutuzumab/venetoclax combination first-line treatment for CLL with aggressive features. The CLL is out of his blood, but lymphoma is now in his femur and kidney region. Our CLL specialist has shared with us it could be DLBCL or B-PLL; the bone biopsy will determine the diagnosis and treatment path. My dad's bone biopsy is on Wednesday with results to be shared with us on Friday.

I want to get a headstart on research, and this group is absolutely the best source of patient expertise out there. Would you please share with me you or your loved one's DLBCL or B-Cell PLL--specifically the journey to getting properly diagnosed (what features were present that led to the diagnosis) and the treatment paths taken? I know that both are aggressive, but is prognosis grim for both? I have very little knowledge, and I seek to educate myself with your help, which I am so deeply grateful for.

Once we know which cancer we are fighting, I plan to join the Facebook groups and search for old Health Unlocked threads, but I want to start the conversation now while I am on Spring "Break" to help my mind make sense of all of this.

I appreciate you all, and I am with you as we stay strong during this ordeal.

With Gratitude,

Christine

[cormac67]

From reading your posts, I see a year ago he was diagnosed with B-PLL. Did he change to a different diagnosis within the year? My husband has B-PLL (I responded to one of your previous posts) and there was no bone marrow test done, it was blood work. And I like to think his prognosis is anything but grim, just more aggressive then CLL but responding to all the new treatments out there. Hope you get answers.

[Phs2385 in reply to cormac67]

Hi there,Upon pathology review, the diagnosis became CLL with aggressive features. After a year of treatment, the CLL is no longer in his blood but the cancer in his femur is indicative of B-PLL or DLBCL transformation--we will find out this week.

Thank you so much for telling me about your husband, and I am thinking of you both.

Christine

[Jm954 Administrator]

Hi Christine,I'm glad they are getting a biopsy and that will make everything clearer. There is not much you can do until you know exactly what lymphoproliferative disorder you are dealing with.

Lymphoma can arise in any tissue of the body and to have infiltration in the kidney, although unusual, is not rare. It is still a lymphoma, not kidney or bone cancer and so can be treated accordingly.

Let us know what his results are and what they propose as a plan. In the meantime, I'll be thinking of you both.

Jackie

[Smith123456]

i suspect that most of us here -who have b-pll-including myself will tell you it gets treated using the same drugs as high risk cll. I know of no-special drug-for b-pll. i am on imbruvica./venclexta/gazyva which is a triplet used for cll.