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double hit lymphoma

hopefulsmurfette
Posts: 2
Joined: Apr 2020

Hello fellow cancer fighters! My Dad was recently diagnosed with double hit lymphoma. Is there anyone here who also has or knows someone who had double hit? Can you please share your experience? What chemo was given? This is new and scary territory. Any thoughts about R-CHOP versus R-EPOCH? Were you successful in curing the cancer or putting it into remission?  

 

Lym999
Posts: 21
Joined: Feb 2020

My oncologist had me checked for double hit Lymphoma. Double hit is very rare and happens only about 5% of the time. I guess I am very lucky not to have it and wish your dad the best. I love to hear about any updates on how he is doing or the treatments he is going through with.

Scubamom for two's picture
Scubamom for two
Posts: 25
Joined: Apr 2018

Greetings Hopeful Smurfette,

 

I was diagnosed with High Grade DLBCL and my tests showed some occasional MYC and was positive for BCL 2.  My presentation was less common as I had no enlarged lymph nodes and the Lymphoma attacked my bones and bone marrow.  Because the Lymphoma was so aggressive, my amazing nationally reknown Oncologist at MD Anderson in Houston recommended a very aggressive treatment plan.  I had 6 rounds of DA-R-EPOCH and 11 intra-thecal injections as a protective measure for my brain, along with two consolodation rounds of High Dose Methotrexate.  This plan is definately not for sissy's, but it seems to have worked as I have been in remission now for 2-1/2 years.  I do not want to scare you in any way, but my Doctor told me and I have also read a lot about how aggressive forms of DLBCL can often travel up the CNS in the fluid and infiltrate the brain.  My Oncologist in Houston ordered an MRI of my brain and they found a couple of very small suspicious spots near my cerebellum, so that is wy I received the IT chemo and the two HD Methotrexate treatments at the end.  With respect to which treatment, my lay-person understanding is that although R-CHOP initially has similar results, DA-R-EPOCH may be better for those with a high grade and/or double hit type of presentation in terms of durable remission.  Obviously, I am not a medical professional, so this is only my impression from pouring over the medical research and any information I have been able to see.  At any rate, I am so glad I chose to go get a second opinion and get treated at one of the very top centers in the country and the world.  I hope your dad is getting the best treatment and care.  There is a reported 60-70% cure rate after first line of treatment and all the experts say that once you get past the two year remission mark, it is very unlikely to have a relapse.  Stay strong!  For the majority of us, there is life after this diagnosis!

Scubamom for two

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