Hello all,
I’m hoping for some advice/ other people’s experiences. (I posted this in the HL group and was signposted here, thank you)
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 SCT 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.
I just feel scared, I feel so uncertain. I think with Christmas being a few weeks away I’m scared it could be my last.
Thanks =)
Hi again El06 and well done navigating across to this corner of the community. As I said in your first post in the HL group we have had a few folks who have HL and followed the basic same path as you are on. So lets look for them to be looking in and to pick up on your post.
Stem Cell Transplant (SCT) for many can be seen as that last throw of the dice treatment and even although the treatment journey can be hard it is very do-able with great results.
You will see from my profile (hit my Community name) that SCT was indeed my final role of the dice back in 2014. I could not be put into remission so could not have an Auto SCT but did go into both my Allo (donor) SCTs with active cancer........... and I came out the other end.
SCT is all about holding your nerve and trusting in your clinical teams to do their job to get you into the position of being put forward for SCT.
The group is a safe place where you can unpack the noise between your ears.
Always around to chat.
