Hello, I was diagnosed with stage 4 HL in July 2024 after ongoing chest pain with tiredness, an ultrasound to check gallbladder identified enlarged spleen in June (and anemia on May bloods). I put two and two together and asked my GP for a haematology referral.
I completed 2 cycles of ABVD prior to my interim PET scan in late Sept which came back DS2 Complete Metabolic Recovery. Hooray. However I only had 1.5 treatments of Vinblastin as it kept giving me severe bowel trouble requiring hospitalisation.
Then had 4 cycles of ABD (worryingly I couldn't drop Bleomycin due to dropping the Vinblastin) and completed treatment on Jan 30th 2025. A few hiccups along the way of course, the early Vinblastin issues, some cycle 3 fevers requiring A&E trips, a DVT scan for calf pain and needed a Picline for the final treatment (number 12) as my arm veins are knackered and unusable with cannulas.
Had my final CT scan on Feb 28th 2025 but consultant phoned following week (3 days ago) to say there is one lymph node that they expected to shrink that hasn't and remains the size it was on interim scan. I have to have a PET CT again at Royal Marsden.
Reading around it seems a residual mass (or lymph node) after ABVD is actually pretty common (20%) and 75% of the time it's inactive and effectively dead tissue. But my consultant made it sound like it was very unusual (he's good like that). Has anybody else had experience of this occurrence after treatment? I've had to learn a lot myself really, about the deuville scale etc. as my consultant just drops these things in without explaining 'being DS2 of course...' etc. He's very factual but dreadful on delivery with reassurance.
Thanks.
Hi again MattTheGardener ……. some Consultants just don’t explain things in a way that takes away that niggling uncertainty…… if they did do this well it would save them and their CNSs a lot of time not having to field calls and emails.
I have been treated for 2 different types of very rare Lymphoma’s (CTCL and PTCL) and 9+ years out from my last treatment (Allo (donor) Stem Cell Transplant) I still have an ‘area’ in my neck where my brick sized mass was that is an inactive lymph-node come scar tissue.
But my consultant told me not to fret about it and don’t fidget with the area as I would inflame the area putting my mind into overdrive ….. my wife heard this and quickly ensured that I did what I was told as if I fidget with the area a flying slipper reminds me not to do so.
I have had various scans for ‘other’ health issues and the area always makes itself know on the scan but comparisons with previous scabs show no changes.
You may want to also 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 monthly Remission group.
They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
