Suspect a relapse and worried

24 replies
11 subscribers
62100 views

All was looking so good and then I found a small lump beanth the skin on my lower back this weekend just passed. I finished RCHOP for DLBCL in June with good results and full remiision. Got through the first three month check up. Was back in gym and exercising and planning ahead. How wrong I was to plan.

The next three month check was at the end of January but does not look like I have made that. I have called the CNS helpline and waiting thier call back. I expect they will call me in and take a look and biopsy. The lump does feel tender and is movable.

Otherwise I feel well so all a bit of a shock and feeling really down when had been looking forward to 2020 so much after a bad 2019.

Not sure what I am looking for reall from this post other than maybe some reassurance that if relapse is confirmed that is not it and that there are more 'tools in the bag' ideally, a few more tools.

Mike

johnr over 5 years ago in reply to Thehighlander

Hi Mike thanks for making clear how much we should share as the is always good and not so good so will stick to what will help, the other treatments I mentioned are still relevant and were the norm, I have just checked the current NICE guidance link here https://pathways.nice.org.uk/pathways/non-hodgkins-lymphoma/treating-diffuse-large-b-cell-lymphoma#path=view%3A/pathways/non-hodgkins-lymphoma/treating-diffuse-large-b-cell-lymphoma.xml&content=view-node%3Anodes-salvage-therapy

and its clear your consultant is following their guidance, clicking on the box in the chart produces the facts on the right of the page. I would still suggest a discussion as you inferred in your initial post as to why that treatment and is it shown to be the better option for your disease presentation.

The other discussion point to consider is timescale between treatment and transplant, they will harvest the cells after your 2nd line treatment and then give you a confirmed date to go in for the conditioning treatment and then the transplant.

I am sure once you get your head around this disappointment you will get through this, the are a few in the SCT group who have had GDP so their experiences will be there to read once you know for sure this is the way forward after your questions.

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

Thehighlander over 5 years ago in reply to johnr

When we first found out about him being a match we had no idea how it all worked so I said that I would give him £1 for every Stem Cell he gave....... he now lives on his own island in the West Indies

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela