IF you have DLBCL, get genotyped!!! It could save your life!

Hi everyone,

My mum was diagnosed with DLBCL fall 2012.  Back then, we were all CLUELESS about lymphoma and all the various available treatments.  We did A LOT of research, and thankfully ended up getting mum REPOCH, which is one of the best treatments to date for DLBCL.  She went into remission for almost a year, and then relapsed early 2014.

That's when we discovered just how much we DIDN'T know the first time around (and believe me, we ALL did endless amounts of research the first time).  

Given that mum relapsed, treatment got a lot trickier, so we sought out clinical trials and landed at NIH.  THAT is when the learning began.  Mum is still in treatment, and we're hoping/praying for a cure, but had we known what we know now, I don't think we would even be in this situation (i.e. mum would/should never have relapsed).

I want to share this info with all of you in hopes that you avoid the same mistakes.

First of all, GET YOUR DLBCL GENOTYPED!  There are 2 main forms of DLBCL:  ABC and GCB, and they respond VERY differntly to different chemo drugs. 

GCB DLBCL has a far higher rate of cure, and in particular REPOCH (which was developed at NIH) when given in the right concentrations has shown to have a 100% cure rate (YES, I said 100%).  NIH published a 5 year study last year showing these results.  What's troubling for me is that my mum has GCB DLBCL and got REPOCH, but she relapsed, which makes me wonder if we'd had her treated at NIH (given that they designed the protocol) whether she'd be cured right now... But as I said, back when she was first diagnosed, we knew NOTHING about genotyping.

ABC DLBCL has a lower cure rate, and doesn't respond as well to REPOCH.  However, they have found that when they combine REPOCH with certain cell growth inhibitors, ABC responds really well!  

So, the point is, GET GENOTYPED, and then research cures for YOUR type of DLBCL.  Do NOT just let your oncologist give you the "standard treatment" for DLBCL.  As I said, NIH (and other premier cancer centers) have shown that depending on your genotype, the treatment should be VERY different!

If you're doctor won't genotype you, go to NIH!  Seriously!  There are numerous DLBCL cancer trials going on there (most are for relapsed DLBCL since it's a lot harder to treat than newly diagnosed DLBCL, but there are tirals for newly diagnosed DLBCL as well).  You may decide not to get onto a trial, but the benefit of applying is that they will genotype you for free!  Plus, to be honest, if I could get treated at NIH even as a "newly diagnosed" patient, I'd do it.  They are brilliant!

Good luck everyone!!!