Non Hodgkins large b cell Lymphoma

Hi Fighter18 and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

I relapsed multiple times over my first 15 years….. so went from treatment to treatment but I am now 9+ years out from my last treatment and continuing to live a great life.

One of the T-Cells is classed as incurable but it’s behaving itself……. I honestly don’t let the ‘what if’s ?’ define me……. as a family our aim is to define our life and live  in the moment.

If you are in the UK you may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……. especially their dedicated Remission Group.

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led post treatment self-management course.

Always around to chat.

Yes I do all the time it’s like walking around with that jack in the box on the tv advert, just waiting for it to pop back up. I’ve only been no sign of lymphoma on my scans for 6 months though so I’m hoping the feeling eventually becomes less, I know it will always be there to some degree though.

All the time. Was diagnosed with stage 4 DLBCL NHL and have been in remission 2 years but worry about relapsing all the time!! I guess one needs to learn to live with it but personally I am struggling ….  So you are not alone! ️

I was diagnosed with high grade Non Hodgkins Lymphoma, DLBC stage 4 in March 2022, had the R-CHOP, had the radiotherapy, and since then there's been no signs of the disease, got my next review in early May. Do I worry about it coming back? To be honest, not really, if it does then I'll get my head down, get whatever treatment is offered and hope I can get through it. All my life I've lived in dread of cancer, and when I got the diagnosis I thought it was the worst thing that could ever have happened.....but it wasn't....I learned that the fear of cancer, for me, was worse than the actual disease. I'm 69 next month, an ex military guy, and I've had a lot of friends who never got the chance to get old. It's a privilege I'm lucky enough to experience, so I make the best of things and get on with my life. Still here. Still in remission. 

Hi.

Five years post treatment

Don't give it much thought most of the time. As time goes on it becomes just one of life's events. 

The first year or two things were different though and it takes a long time for the memory's to fade from the all consuming head noise they are at the start.

Yes, constantly!  It’s 4 years since my r-chop treatment and I think about it everyday.  I constantly check for enlarged lymph nodes and when I have itchy episodes I fret that I’m relapsing.  It’s just my new normal I guess.  I take sertraline now for anxiety, I’m not sure what I’d be like without it! But….I’m still here and the gratitude and appreciation I have for my life is immense x

Hi, had RChop 2020 for LDBCell NHL 2020 during pandemic. Still in remission.  You will eventually start to relax, the longer you are in remission, but any worries, ask your team to get bloods done or get checked out. Don't delay, it just adds to anxiety,  which you dont need. Surviving  cancer is a mind bend, run with it and try enjoy life. We are the lucky ones. X

Hi Poly,

I was diagnosed with progressive stage 4 diffused large b cell non hodgkina lymphoma on July 2,2018. I did 6 rounds of RChop chemo. I've been in remission for 5 hrs  and still worry my cancer or another kind of cancer could get me again. You're not alone. I worry even my oncologist tells me it's unlikely to come back. The worrying for me became less and less over time. Stay strong! You got this. 

After treatment that's everyone's MAIN question. My oncologist told me something like my cells didn't have a certain 'marker' that indicated the cancer would return. I was very happy about that! Here I am six years post treatment 'cured' 

It aint comming back..I kicked its arse!