Anyone else with Non-Hodgkin T-cell/histiocyte-rich large B-cell lymphoma (THRLBCL)?

Hi Mark D 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 44 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 did a community site search and did not get a hit on your type…… I also searched Lymphoma Actions……. various Support Platforms… and did not get a hit but with over 60 types and sub-types of Lymphoma not finding others with the exact same rare type is not that unusual…… it took me 16 years before I meet someone with my first type of T-Cell.

How are you getting on with the Pola-R-CHP?…… I had a number of these drugs in my R-EPOCH and honestly did ok through my 6 cycles.

Hi Mike,

Thanks for responding. It's a bit frustrating having a rare subtype as when I'm feeling more analytically minded its difficult to find prognosis and outcome data. I've managed to piece together bits of data from medical white papers and it seems fairly inline with DLBCL, although with frequent developments in medication outcomes are improving, so I'm filing into very weighty and increasing uncertainty basket!

The main negative effects I've suffered with Pola-R-CHP is chemo belly, mainly a dull ache 7-10 days after treatment and bouts of fatigue. Also, insomnia can be a bit of a problem, although exercise seemingly counteracts that. I figure that along with the hair loss it's a relatively small price to pay if I get better. For me I'm trying to build my mental resilience as it's hard to say what the future holds at this stage, so I'm trying to get some counselling from Macmillan and have a local charity that's helping with access to yoga and gym.

To anyone reading, I wish you all the best wherever you are in your journey.

Regards, Mark

Keeping active is one of the best tools to overcome some of the side-effects…..

Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am over 9 years 8 month out from my last treatment, I turn 70 this year and I doing great.

Like me, you are a statistic of one…… and regardless what you read and at times what you are told there is no clear statistic and even prognosis.

In late 2013 I was told that the plan that was now in place was the last treatments available for me and if it did not work I was in a 2-2.5 years clock…….. 14.5 years on there are new treatments come on line so I have a fall back…… but my team are rather confident that these will not be needed to the point I was discharged from their care in June 2018.

As well as being somewhat cathartic, I thought it might be useful for others with THRLBLC to hear where I'm at on my journey.

I completed my 6 rounds of Pola-R-CHP in Oct'25 and received a relatively positive PET-CT scan in Nov'25 a subsequent scan in Jan'26 showed refractory cancer.

This was a huge blow psychologically, as well as to the prognosis. I was all set to receive CAR T infusion this month, before hearing that I had a complete response to one round of R-GDP bridging chemo, which was quite unexpected. This now means that I have the option of Stem Cell Therapy with a better prognosis and CAR T Cell is there in reserve should the cancer return.

Quite the rollercoaster of emotions.

As well as the healthy diet and doing walks most days as well as some light weight lifting I have also found Wim Hof breathing extremely beneficial, when my lungs have not been suffering the chemo side effects. The technique is shown to improve your white blood cell count as well as very good for mindfulness, if that's appropriate to where you are in your journey.

Hi Mark Mark D  and thanks for the update.

Yes I recognise the rollercoaster of emotions and physical endurance….. but a plan is a plan.

Back in late 2013 Allogenic (Donor) Stem Cell Transplant was my final tool in the box….. it’s a long story but I ended up having 2 Allograft SCTs but I am now 10.5 years out from my last treatment and still living a great life.

In our book there was always hope until hope runs out.

Hi Mark,

I also have TCHRLBCL in the bone marrow, spleen, liver and mediastinum so it is good to hear a fellow sufferer (is that the right word?) is on the road to recovery.

I am currently in the 2nd week of my 6th and hopefully final cycle of chemo and now have the 5 week wait to find out how successful or not the treatment has gone. My journey has some similarities to you.

I got the flu in Jan 2025 which took the wind out of me and was the first time I experienced proper night sweats along with fever. These were my only real 'B cell' symptoms I suffered. I never recovered really and in May was rushed into hospital, my left lung had stopped inflating due to a build of fluid and pus in my pleural cavity. Diagnosed with an empyema and neutropenic sepsis and eventually needed lung surgery (VATS) as the antibiotics and chest drain failed to clear the pus. A follow up blood test in July highlighted my bloods had crashed and I was then sent for a bone marrow biopsy in August. Back in hospital in October with of all things an ear infection and neutropenic sepsis again. Got given my cancer diagnosis during this hospital stay.

Started Pola R-CHP mid October, generally I have physically taken the treatment quite well, like you my main side effects have been chemo belly, throbbing in the spleen area and fatigue. I did need a 3 week delay after the 4th cycle (my toughest cycle of all 6) when my neutrophils struggled to recover.

I am a school teacher so have been off work for 6 months due to the increased risk of infections in the school environment. I am nervous about my upcoming results but also about picking up my old life again and whether I have it in me still to teach.

Anyway, thank you for your post(s), it is always good to hear positive news from people with the same condition and keep well.

Andrew