Dec 18, 2012 - 7:12 pm
Hi.. I'm a 42 yo diagnosed with a high grade "double hit" lymphoma in July 2012: it is considered one of the most aggressive sub classes of DLBCL with an add'l mutation characteristic of BL. I've completed six cycles of DA R-EPOCH. I've seen four oncologists, including three specializing in lymphoma. My primary onc recommended 8 cycles of DA R-EPOCH + CNS Prophylaxis. The 2nd onc from MSKCC recommended 6 cycles of DA R-EPOCH + CNS Prophylaxis + "mop up" with SCT. The other two lymphoma specialists recommend a more aggressive regimen, essentially higher dosages of MEGA chemo, but they don't think CNS Prophylaxis or SCT is necessary since my BMB was negative for lymphoma & the cancer had not metastasized.
The onc from John Theurer Cancer Center at Hackensack UMC recommends "mopping up" with a more intensive treatment called IVAC, which includes MEGA IV dosages of Ifosfamide, Etoposide, Methotrexate & Cytrabine. I'm ruling out SCT: the decision is whether to finish my treatment with R-EPOCH or to try the more aggressive IVAC for at least 2 more cycles. BTW...After cycle 3, the CT Scan showed that the tumor in the mesentery shrunk from the size of an avocado to the size of an olive. I had a PET Scan today. I expect the tumor to be gone; although the cancer could be microscopically present in the blood & lymphatic system. Would very much welcome any input and experience with this regimen. Thanks!
-DX: "Double-Hit" NHL | High Grade, Bulky Stage II Translocations: BCL2 (common with DLBCL) & c-MYC (common with BL)
-Treatment: DA R-EPOCH & CNS Prophylaxis, Aug - Dec 2012 (6 cycles) + R-IVAC starting Jan 2013