DLBCL or B-PLL

[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

[SVEN63]

Hello Christine, I had a bone biopsy and it came back inconclusive so hopefully your Dad gets a positive diagnosis to determine appropriate treatment. I also had a lymph node removed and it came back negative, so sometimes it takes a few biopsies to determine accurate diagnosis. I had a subsequent endoscopy done and biopsy scrape in my stomach confirmed Non Hodgkins Lymphoma, DLBCL. It is an aggressive form of cancer and I was in stage 4. I immediately went on R-CHOP treatment which consisted of six treatments every three weeks. My cancer is gone for now. Stage 4 patients typically have a 57% 5 year survival rate. Depending on your Dads stage and what cancer he may have his survival rate may be higher. DLBCL can be cured with RCHOP. Best of luck and if you have additional questions dont hesitate to reach out. Sven

[Phs2385 in reply to SVEN63]

Thank you, Sven; we are going the clinical route: Loxo-305, and if that does not work, we will select a chemotherapy treatment (Obinutuzumab-EPOCH-Venetoclax). I pray for your continued remission.

[SVEN63 in reply to Phs2385]

Thank you and best of luck. Please keep us posted. Praying for your Dad as well!