Rollercoaster DLBCL

New to this site and looking for some hope in our situation.

A close relative was diagnosed DLBCL last year-the diagnosis although worrying was to an extent a relief as they initially thought the tumour was behaving like a small cell lung ca pre biopsy-and initially was stage 4 so prognostically things seemed very despairing-however in the midst of this horrendous anxiety and concern we were given a beacon of light in that the histology proved to be DLBCL-technically also stage 4-involving 2 extranodal sites-chest/mediastinum and 1 of the adrenals. 
An interval PET CT was completed after 4 cycles of RCHOP-which showed almost 7cm reduction in the mediastinal mass to 5cm and significant reduction in the SUV uptake from almost 20 to 5-so whilst there was great improvement there was still some activity-there was no longer any adrenal involvement. We were hopeful with 2 further cycles of RCHOP and 2 subsequently of Rituximab that things would further improve-hoping for complete remission . There was always a plan for radiotherapy to consolidate treatment given initial bulky mediastinal mass. 
4 cycles of IT methotrexate prophylaxis were also given because of the adrenal involvement.

Roll on to the post treatment PET and the response has essentially appeared to plateau since the 4th cycle. Described as stable with some minimal improvement. 
They are going to proceed to attempt to consolidate a remission status with radiotherapy. 
Clinically my relative is doing excellently from a symptom perspective and have a great performance index score despite being >70. 
Looking for hope from anyone in a similar situation? 
could the radiotherapy be enough to consolidate as the activity is just in one focal area?

Would their age preclude them from further treatment options if necessary? (Praying they won’t be). 

  • Hi 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 was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is different from your relatives I understand the challenges of this journey well.

    There have been a few members over the years of have been in the same position as your relative and many did find that radiotherapy did do the job but others had to go on to further treatments. There are indeed challenges with some second and third line treatments when it comes to a persons age but this is changing all the time.

    I had my first Stem Cell Transplant back in June 2014 and the upper age was in the early 60s (I was 58 at the time) now 8 years on I am hearing about some folks in their late 60s going through Stem Cell Transplant. 

    Lets look for some of the group members to pick up on your post.

    Always around to chat.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Thanks for your response Mike.

    We’ve been in touch with our team who stated the original mediastinal mass on PET was much more extensive in size so there has been >75% reduction with RCHOP, and whilst SUV remains slightly up they are unsure how much is post inflammatory change v persistent disease. If any further disease on PET 3 months after radiotherapy they said they would re biopsy first. 

    They seem relatively confident that radiotherapy will induce remission to this focal area as nowhere else at present (really hope and pray this will be the case) and that is due to commence shortly. They hope no further treatment will be required thereafter but state there are many options if it is required, and because performance status is so good this will be determining factor as opposed to age for eligibility. 
    Would be great to hear from someone who was in a similar situation.

  • It’s amazing what these treatments can do, as you know my treatment journey was rather different but I did have targeted radiotherapy during my treatment years and this was very successful.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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