relapse

There aren’t many on here sadly; it tends to be a quiet group, people posting early on in treatment and then getting on with their lives once it’s finished. However I know there’s a group on one social media site specially for refractory and relapsed HL (entitled Hodgkin’s Disease, Relapsed and Refractory) which he might look for, there is a big group of folk worldwide who have a wealth of information (I won’t name the media as it will be moderated and removed but you can probably guess!) 

Some people are trying using Brentuximab and Nivo, or Brent and Pembro, and having some success. 
I would also advise a second opinion as there are a handful of renowned specialist haematologists here in the UK who are happy to advise, I’d suggest Professor John Radford (based at the Christie hospital in Manchester) who threw everything he had available at our lass and succeeded, bless him (but he is getting near retiring and I think now works part time) Dr Adam Gibb is his Research Registrar and is incredibly knowledgable. Also Dr Chris MacNamara at UCLH and Dr Graham Collins in the Oxford hospitals group. 

oh and there’s also the smaller charity than this, Lymphoma Action, which has a wealth of information and support, on line or on the phone 0808 808 5555. 

Keep posting and I wish you success, it’s tough being a parent carer! 
Hugs xxx

Thank you so much x