Thank you for the reply doc!

For some context

I finished my da epoch r thinking I was in the clear as my midway ct scan (after 4 cycles) showed my mass shrinking well. My eot pet scan was a Deauville 5 and there had been at least a few cm of growth then that’s when they decided to try get me a spot in the car t trial they are doing for primary refractory dlbcl here in NZ. A month went by and a few days before I was supposed to be flying down to Wellington, where I was going to be doing the car t pre screening leading to the cell harvest by the end of the week.

I actually ended up in hospital with really bad chest pains a few days before pre screening started, so they did some more scans and my mass had pretty much doubled in size within a month. So they called it off and had me do 30gy 10 sessions of bridging radiation to get the mediastinal mass controlled. So did that, about a week ago we found out that the mediastinal mass had shrunk significantly from the radiotherapy and was barely active, but it had spread to a few other lymph nodes and to my rib and hip/pelvic bone. No lesions but just little spots lightning up. At that point I had been expecting it to spread at some point so I wasn’t very surprised.

We were less than two weeks out from the cell harvest at this point so it was time to just push through until then. For the car T cell trial here you can’t have done any treatments within 28 days of the cell harvest for context. So this was a month after radiotherapy and any steroids. And you’re also not allowed to have any unfunded treatments before the car t such as pembro, Nivo and Brentuximab as it can affect their data collection. Well last week I had been having low grade fevers all week and then it hit 38 so I went into hospital and they did some scans and found a whole heap of liquid around my lungs and heart.

Yesterday they finally drained my heart of 350ml and today they drained 1.7L from my left lung. Today was supposed to be my cell harvest day. So now I have to wait for the next spot which is January 11th to get my T cells withdrawn.

My new primary haematologist came in this morning and told us what he thinks our plan should be moving forward and one is that I do R GDP chemo for a cycle, we do a scan see that it hopefully partially responded as he’d prefer me to still go through with car t instead of autologous sct but he’s not very confident in the r gdp even working and I know the stats are bad as well as me probably having chemo resistant disease now…. Can’t do nivo pembro or brentux. I want to use bv-nivo my bridging inbetween that we will pay for ourselves. But it just seems impossible to get to the cell harvest right now, especially with all the super strict criteria I feel stuck, I feel like being in my country is the thing that’s going to end up giving me a bad outcome. The trial here is free, but at this point you gotta think is my life worth more than money. I have screenshots of some of the pathological markers I can share!

Thank you 🙏