CHL treatment and outcome

Hi Aalina let’s look for someone with lived experience to pick up on your post.

Remember, if you are in the UK you can widen your support platform by connecting with the FB group run by Lymphoma Action…… The FB group is just one of their various  Support Platforms… with the FB group alone having over 6300 members.

Hi Aalina. I had 2 rounds of ABVD followed by 4 escBEACOPDac. 

After the ABVDs I had a Deauville 4 so got escalated. After 2 escBEACOPDac I had a 3 but only JUST. I then had the other 2 and had a Deauville X/4! Absolute nightmare!

The mass was still quite large so waited 6 weeks (horrendous wait) to do another scan. At THAT scan I was back down to Deauville 3. Still large mass but it counts. I got a second opinion from the big dog haematologist at UCLH and he didn’t recommend having radiotherapy. He didn’t think the evidence was strong enough and felt the risks were higher so here I am. 16 months on from my last treatment and still feeling better every day!

hope this helps.

Stage 4 with B symptoms, so it was spread all over the place. Four cycles of escBEACOPPdac then remission until now so it's been 22 months now

No radiotherapy as no evident big lymph nodes after the 2nd scan, however the chest masses can be a bit more solid and might need extra 'help'

let me know any questions