Hello all,
I’m hoping for some advice/ other people’s experiences.
I was diagnosed with stage 3B HL in June 21.
I had 2 cycles of AVBD then scanned, the scan didn’t how enough response. I then had 2 cycles of BEACOPP, same again scan didn’t show enough response. I have had 2 cycles of IVE chemo and guess what- not enough response. This was a big blow as I was due to have an auto STC over Christmas. I have started Brentuximab and have been told that if this does it’s job I will have an allo SCT.
However, I am very concerned and aware that I do not have many (if any) treatment options left if the Brentuximab doesn’t work. I would love to hear any stories from other people who have Refractory or who know what might happen next for me. Of course I understand that each person is different and I have of course spoken to my team at the hospital and I felt like I understood everything at the time, but it seems a day of being by myself with my thoughts have confused things.
Thanks =)
Hi El06 and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various Lymphoma groups but more importantly our dedicated Stem cell transplant (SCT) group
I don’t have HL but was diagnosed in 1999 with a rare, incurable but treatable type of NHL Stage 4a and have had 2 Allo (donor) SCTs
It’s a nervous time getting through treatment and being into the position of having SCT. There have been a few in this group follow your oath and come out the other end so let’s see if they are still looking in.
Why not hit the Green link I have created above. Then once the page opens up click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a new post by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so why not hit ‘Start a Discussion in New here, say hello’
I will keep an eye open for you in the SCT Group.
