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.