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

swedeness

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!!!

 

 

jimwins

Thanks for sharing

Thanks for sharing this useful information.  I hope your mom does well

Dabi

Can they genotype it after

Can they genotype it after its already gone or only when it's taken out and sent to lab?

Unknown

Dabi said:

Can they genotype it after

Can they genotype it after its already gone or only when it's taken out and sent to lab?

Possibly

i had some additional tests done several months after biopsy using stored samples of the biopsied tissue. Many labs store samples of your tissue. Wouldn't hurt to ask.

yesyes2

unknown said:

Possibly

i had some additional tests done several months after biopsy using stored samples of the biopsied tissue. Many labs store samples of your tissue. Wouldn't hurt to ask.

Genotyping

It's my understanding that genotyping for DLBCL is relatively new.  And is still only being used in cliniclal trial setting.  It has been done for several years for FNHL and other indolent lymphomas.  I first learned about genotyping at the yearly LRF meeting in 2010 and have been attempting to get geno typed myself since than.  As recently as Jan. 2015 I was told by a Stanford doctor that it isn't available unless participating in a clinical trial. The doctor said that insurance companys also will not pay for this test and it's not ready for office use.  If someone else knows anything different please post as I'm very interested.

Unknown

yesyes2 said:

Genotyping

It's my understanding that genotyping for DLBCL is relatively new.  And is still only being used in cliniclal trial setting.  It has been done for several years for FNHL and other indolent lymphomas.  I first learned about genotyping at the yearly LRF meeting in 2010 and have been attempting to get geno typed myself since than.  As recently as Jan. 2015 I was told by a Stanford doctor that it isn't available unless participating in a clinical trial. The doctor said that insurance companys also will not pay for this test and it's not ready for office use.  If someone else knows anything different please post as I'm very interested.

Correct

i have indolent form, and was not aware it could not be done for DLBCL variant. Will ask my oncologist to verify this.

yesyes2

unknown said:

Correct

i have indolent form, and was not aware it could not be done for DLBCL variant. Will ask my oncologist to verify this.

Sorry, error

I believe that I was thinking of a blood test to see if there is any residual disease after remission is obtained.  The name of the test isn't coming to mind right now, too much chemo brain, but is the same sort of testing done on patients with Leukemia.  It's a test done to determine likelyhood of relapse by looking for any residual cancer cells in the bloodstream.  It is not Genotyping and I am sorry if I confused anyone.  That was not my intention.  Although isn't genotyping relatively new?  I know i've not had it and was treated by UC San Francisco and Stanford.