Diffuse large B cell lymphoma (Non-GCB subtype)

Hi  and welcome to the Community.

So sorry to hear about your nephew being diagnosed with this type of NHL. I am not sure if we have had someone actually say they have this exact sub type but most likely they may have not known as more research is showing more than 80 subtypes of Lymphoma.

The time it took for his diagnosis is actually rather normal but it is important to get as clear a picture as possible to move on to treatment.

Even although I have been on my cancer journey for 20 years for another rare type of NHL some of the details for me will still go over my head. The most important thing to understand is that this can be treated - yes it may be hard work but good results can be achieved.

I had a look in the Lymphoma Action Site (see below) and noticed “At the moment, most people with DLBCL NOS have the same treatment. However, scientists are carrying out research to find out if different treatments are effective against types of DLBCL that developed from different cells. In the future, this might help doctors choose the most appropriate treatment for each individual person”

What are his team saying about treatment - the normal route taken will be R-CHOP.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/diffuse-large-b-cell-lymphom

Thank you so much Thehighlander for the link. It's very informative. And I'll surely update my profile soon.

Yes, I've been searching for details on this subtype but unfortunately in vain.

I'm honestly glad to hear that you been on your cancer journey for 20 years. Sending blessings to you. 

I'm not yet sure about his treatment as it was hard for me to digest the fact. Hopefully I'll update you tomorrow.

I'm attaching his IHC Report, please help me to understand.

Hi if they have said its non GCB it means its ABC - active B cell DLBC NHL when you read about DLBC you will see mainly the disease is classified into one of these 2 subtypes, however research about 3 years ago showed the are at least 4 different subtypes as they seek to better understand the disease and move towards a more personalised treatment.

He may have rchop as his treatment or they may decide to use one of the newer combinations where they add another drug to that regime, a lot will depend if they treat him as they would an adult or a child.

It would help to know where he is being treated, however we are here to help so ask any questions the are a few of us who have been through treatment for this I had it 10 years ago. If you do google this try to stick to legit sites and try to read only recent informations as things are changing and outcomes are improving all the time and new treatments being developed.

John  

The other point is if you wish to research use the blood journal, of ASH conference papers - American Society of Haematology the is also a European version too and they produce research papers and they explain the additional drugs that could be used

as for the histology report thats best left to Jane one of the nurses who volunteers and answers questions, Mike can point you in her direction

I am currently receiving R-CHOP for Activated B Cell DLBCL.  

As John mentioned, there's a lot of research going on into whether adding different drugs produces better outcomes.  RIght now the results aren't conclusive enough for those regimens to have replaced R-CHOP as the conventional treatment for non-GCB lymphoma although more and more people who it's believed would benefit are being placed in trials.

They do seem to produce better outcomes under specific circumstances but DLBCL is a complex disorder and there will never be a one size fits all treatment which is why so much research is focusing on finding ways to individualise treatment.

Don't get too hung up on the numbers.  They're not a divination tool which allows you to predict the future and you will drive yourself nuts if you become obsessed with tracking them.  At best, they're suggestive.

The information gathering stage and the work up stage seem to drag on forever but they're essential to developing the best treatment plan for your nephew.  It's fine to ask the treating team why they are recommending a specific approach and to keep asking them until you feel you fully understand the answer.

No matter how anxious you are for information, stay away from Dr Google.  What you'll get is a lot of outdated, inaccurate, and irrelevant garbage which will scare your pants off.

I'm on the Lymphoma Australia mailing list.  They have a lot of interviews from the ASH conference available on their website and they also link to them in their newsletter.

https://www.lymphoma.org.au/news/126/expert-interviews

You can find Jane along with our other experts in our ‘Ask an Expert’ section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Jane covers our Stem Cell Transplants but will have a wide range of Heamatology knowledge.

Good morning , way back in 1999 when I was first diagnosed Dr Google was a toddler and I am pleased that was the case as it took a few years to understand the challenges my type of NHL would bring.

Years on when my treatment became more full on I did try and understand what the results said but a good Consultant friend who is also my Respiratory Consultant said “deal with the things you can control - results are subjective and are unique to each individual so they can’t be understood without all the persons presentation information”   

He then advised us to ‘control the battle between our ears’ and that was great advice and something we have done during the hard times as this helped us get a clear plan together to get through what ever came along.

As we had to deal with a wide range of results from both spectrums of good and bad. So we developed a simple way of getting a picture of what we were facing so we always asked our teams (they got what we were asking) to put my medical position into a mental swingometer!! so we could understand how bad this were..... and the pendulum did swing from bad to good and number of times but I am over 4 years post my last treatment and the pendulum is up at a 9 out of 10.

Do come back once you know more information.

One thing to be aware of is that even if your nephew sails through treatment and has a complete response, the experience is going to be shit.  It requires a lot of short term sacrifices which are going to disrupt his normal life and that of his family and there are times when he's going to resent that. 

To the extent that you can, just listen and acknowledge that it's tough for him. It's tempting to try to be encouraging and inspire him, but I find that can easily come across as patronising and leave me feeling unheard, so make sure that you're listening and taking your cues about how to respond from him.  His parents may find it too confronting to listen to his dark thoughts, so you might be in the ideal position to take that role if you can.

Hi johnr

Thank you for clearing what non GCB is. 

Yes, they started rchop planned for next 6 months. 

He is being treated in Mumbai, India.

Hi Lolie,

Thanks for sharing this. I'll keep myself away from researching for sometime and trust the team handling. The more I read, more scarier it gets. 

However, I'm really glad to find this community and wonderful people here. Reading y'alls journey has given me some positivity in such dark times.