Hi all,
Had a bit of a rug-pull in my DLBCL treatment. Was diagnosed as stage 2A, limited disease. I’m 37F, and my doctors’ key message at the time was that this was treatable, I was r-ipi 0, and there was absolutely no reason not to think this would be a few months of R-CHOP misery and then I could get on with my life. Which I really clung to, as I have two young children, the second of which I had in August ‘25.
Except it’s resistant to R-CHOP. The PET scan today showed it was active as ever and my docs have referred me to the CAR-T team. And while my main focus is keeping it together for my kids (4y and 8m), which sort of keeps me going…..I am terrified. Not wanting to plant things in the garden type of terrified, because it’s a reminder of how short my life might end up being.
I have a healthcare background so I understand the risks and implications of having a refractory disease. I think I have a good idea of what CAR-T has achieved in terms of giving those with r-chop resistant disease another shot of a cure….but I’m under no illusion that this isn’t a step towards my absolute worst fear: leaving my kids. I’m heartbroken everytime I look at them.
I guess I just need some positive stories, or encouragement from those who have gone through this. I can find literally no stories of people who have had such early-stage disease and not responded to r-chop. It feels like 0-100 real quick. There’s a little voice in my head telling me that it must be extra-bad to be this tricky so early on.
Thanks for reading 🙏🏻 keep fighting the good fight, everyone.