new to group! advanced diffuse large b cell, very sad.

I am sorry to hear that 

I hope you get well soon 

Hi Mel MelissaM and a warm welcome to this corner of the Community although I am sorry to see joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

It is a shock receiving a cancer diagnosis but the important thing to get is that Lymphoma especially fast growing High-grade non-Hodgkin lymphoma like your DLBCL is initially treated to cure……. my type of low grade is incurable.

We do have a specific group for Diffuse large B-cell lymphoma but it’s not that busy at the moment but you can have a look through the posts in the group.

As I said I was diagnosed over 24 years ago and have had various treatment over these years but I turned 68 last Nov and am living a great life.

Have you be told the ‘exact’ name of the chemo regime you are going to be having?

What hospital are you being treated at?

Any question you have do ask them as we can help you out ((hugs))

Sorry to hear this. From its manifestation, it "sounds" like primary mediastinal B-Cell Lymphoma. That variety tends to form large masses rather than multiple lymph node tumours. It is one of the most common and best known of the lymphomas by most counts. Treatment is well-defined and nearly always effective. Indeed, there are some options in treatment although something like R-CHOP may well be the treatment of first resort. 

   The "R" in R-CHOP is for Rituxan, a monoclonal antibody drug which is known for shrinking the tumours/masses like ice cubes melting. It may take a round or two before true improvement is seen, however you may be reasonably certain of a good response. Your age weighs heavily in your favor.

   Do let us know how you go.

Hi Mel

So sorry to hear about your diagnosis. Hoping I can bring be  a little comfort  (in a strange way) to know that I was diagnosed with the same on the 27th Feb. Sharing my experience so far - a problem shared and all that.

Primary mediastinal B-Cell Lymphoma is the name as po18 mentioned below.  My mass was around 10cm by 7cm and has been pressing on my heart and lungs too. I’ve had one round of chemo and going into hospital on Tuesday for my 2nd round and as po18 said below the treatment is so targeted to this condition the medical team have said the mass has already shrunk with just one round. Very encouraging indeed. Also remember that fast growing b cell lymphomas are normally very responsive on treatment. 

That said I am also very scared. I’m 50 and mum of two daughter teenagers and still can’t quite get my head around I actually have cancer. And all the what ifs are somehow especially strong tonight and hence on the for looking for some reassurance or at least some positivity. And I found it in this chat.

The one day at a time thing needs to be our mantra Mel. What can we control and what can’t we. We must trust the experts and not get ahead of ourselves.

Please do get in touch with any questions. I will share what I know and try to bring a little light in this TEMPORARY darkness. xx