39 years old mom of two recently diagnosed with Non hodgekins DLBCL (ABC subtype)
Hi everyone, I’m 39 years old mom of two recently diagnosed with DLBCL (ABC subtype), Stage IV, CD20 positive, Ki-67 ~80%, FISH negative for MYC/BCL2/BCL6 rearrangements (not double/triple hit).
My PET showed multiple nodal regions involved + renal/extranodal involvement. MRI brain was done recently and reportedly did not show CNS lymphoma, though my CNS-IPI is high 4/5, so my oncologist is reviewing whether CNS prophylaxis is needed.
I’ve started R-Pola-CHP (Pola-R-CHP) and completed cycle 1. A few questions for people with similar journeys:
Anyone here with Stage IV / high-risk DLBCL / ABC subtype who achieved complete remission? I would really appreciate hopeful real experiences.
Anyone with high CNS-IPI score (especially with kidney/extranodal involvement) who did NOT develop CNS disease and still did well?
Did anyone’s doctors choose CNS prophylaxis? If yes:
- intrathecal chemo?
- high-dose methotrexate?
- or observation only?Has anyone received Pola-R-CHP on a 14-day schedule instead of the usual 21-day schedule? If yes, what was the reasoning?
Did your palpable lymph nodes shrink quickly after cycle 1? How early did you notice response?
Did anyone experience scary neurologic-type symptoms (head pressure, tingling, heaviness) that turned out to be anxiety / cervical tension / non-CNS causes?
For parents with young children—how did you safely get through chemo cycles without constant infections?
Looking for balanced but hopeful experiences. Thank you 💛