Hi

Hi  and welcome to this corner of the Community.

Very sorry to hear about your daughters relapse, unfortunately for some, HL can be stubborn to fix first time round.

I have NHL and relapsed many times over my 21+ years but one thing I found out was there has always been a ‘next’ treatment and for me, I am over 5 years into remission from first being told in 1999 I would never see a cure let alone be in remission..... so from my prospective there is lots of hope but tears are allowed.

I think getting that there are a number of ‘next’ treatments available that will get her into a long term remission is the thing to focus on. 

There are a number of the HL group have been in the same position so let’s look for them to pick up on your post.

What are her team saying about the ‘next’ steps?

Hi, 

as a long term member of the group for our daughter who had HL I know exactly how you feel! Sometimes being a parent of an HL patient is really tough, and we did have some years of it. (I won’t go into it but my profile tells you more) 

the probable next stage will be to hopefully gain remission then harvest bone marrow stem cells (it sounds scary but it’s usually done in a similar way to donating blood, they spin off the stem cells and then everything else goes back into another vein!) but it’s important that remission is gained first, that gives the best results. 

our daughter was treated a long time back (I know 2004 seems recent but in medical terms it’s quite a while) and there are quite a number of drug combinations to help. Ask about Brentuximab with Bendamustine as that is looking promising in quite a number of cases. Not all centres can offer it though. Ask too about Nivolumab again it’s a drug which wasn’t around when our lass went through it. She proved to be primary refractory in that no Chemo fully worked (but she’s doing ok now!) 

If you go to appointments, take a notebook and jot down answers to your questions, and good doctor will give you time. If you’re not happy then ask that they seek an opinion from top specialists, I can list a few; Professor John Radford at Manchester’s Christie Hospital ( he’s beginning to retire though!) or his research registrar Dr Adam Gibb, Dr Chris Macnamara at UCLH/Royal Free in London, and Dr Graham Collins in the Oxford group of hospitals, probably the Churchill is easiest. 

Keep posting.....

Hugs xxx