Dual refractory after ABVD & BvB, CHL Stage 2B
Hi everyone,
I’m a 27M looking for some advice and to hear from anyone who’s been through something similar.
I was diagnosed with Classic Hodgkin lymphoma (CHL) in June last year with a 14 cm bulky mediastinal mass. I completed 6 cycles of ABVD. My interim PET scan showed a Deauville score of 3, so things initially looked promising. Unfortunately, my end-of-treatment PET scan showed a Deauville score of 5, with two metabolically active spots remaining in the mediastinal mass.
I then started salvage treatment with brentuximab vedotin + Bendamustin. After 4 cycles, I had another PET scan yesterday.
The good news is that one of the two active spots has completely resolved (Deauville 1). However, the other spot is still present with a Deauville score of 4. So while there has been a partial response, it seems the disease has not been completely eradicated.
I live in a country where treatment options are limited. After a brief discussion, one of my doctors suggested either:
* Two more cycles of a more intensive regimen such as ESHAP combined with brentuximab, or
* Two more cycles of brentuximab + Bendamustin
And then Radiotherapy to mediastinum mass followed by an Autologous stem cell transplant if Im eligible
I’m devastated. I never imagined I could be refractory to both first-line and salvage treatment, and I’m struggling to process everything.
Has anyone else had persistent PET-positive disease after salvage therapy and still gone on to achieve remission? If so, what treatment ultimately worked for you?
I’m also scared that I’m running out of options. Is it too early to be thinking about palliative care, or are there still realistic curative approaches in situations like this?
I’d really appreciate hearing from anyone who has been through something similar. Thank you for taking the time to read this.