Challenging NICE guidelines

Hi Loulabel and a warm welcome to this corner of the Community although I am always sorry to see folks 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 NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

I am sure you can challenge the guidelines but the guidelines are there to protect you but also the medical professionals.

Back in 2010 - 2013 I was given drugs that had not been approved by NICE but it was agreed that they would be beneficial for me so there was ‘some way’ of getting round the approval including me signing a waver document. It was costing my local NHS Health Board £80 a day for these drugs and I was on them for just under 3 years !!

From what I have seen across many many posts over the years there are go-to chemos and targeted therapies like Rituximab or R-CHOP that on the whole transcend many of the NHLs…… I had R-EPOCH and it was seen as the big brother of R-CHOP but they had to hit me hard as my condition became very aggressive in late 2013 so this was used as a steppingstone for me to go onto two Allo (donor) Stem Cell Transplants.

I have also talked with many folks who have went into chemo based on a good professional ‘guess’ as a ‘safe’ biopsy was just not possible…… but it was all based on past experiences and a clear MDT agreement.

What treatment did you have 3 years ago?  If it included doxorubicin, there's a cumulative lifetime limit on that due to its cardiotoxicity - so R-CHOP wouldn't be an option.

I would expect you to be offered one of the second line treatments.  It sounds like you've had a solid organ transplant, so your haematologist is the person best able to explain the treatment options.

How was DLBCL confirmed the first time without a tissue sample?