Help! Treatment options for stage 4 classical Hodgkins (refractory)., have had ABVD,beacop, radio and scan showed cancer is still there.

Hi Sonaldia,

you are most likely feeling a sense of rising panic right now, they most likely said HL is a ‘good’ cancer to treat as the vast majority go into remission with first line therapy!

i see you’ve already had a reply, but I will try and add.....firstly so sorry you’re here, most folk do find themselves on this forum because of some hiccup along the way. 

Just to reassure you, there are more treatments available now than way back in 2004 when our daughter was diagnosed. (More on my profile but it’s long as she had a long time getting through - plus I got cancer too) As yet, though, CAR-T isn’t available for HL, at present it’s only for NHL. But I guess it won’t be long till they figure a way of using it. 

Brentuximab Vedotin alone does seem to help a proportion of HL patients whose disease seems chemo resistant. But it does seem to work even better in conjunction with Bendamustine, hence the BvB initials. 

GDP is a tough but often very effective bridge to an auto SCT, I’ve heard of folk going through that, having their SCT and recovering and then we see them no more, which suggests they’ve done so well they have left the forum! 

Keep posting, you’ll get replies (I will pop in now I know you’ve posted) though as this group isn’t busy it may take a day or so! Please don’t google as the stories on there are scare ones and often out of date. Which hospital are you being seen at? Different ones even in the UK seem to have different ways of treating. 

Hugs xxx

Hi  and a second welcome to the Community - I don't have HL but a rare NHL but have been through two Stem Cell Transplants with cells from my brother. I help out in our dedicated Stem Cell Transplant Forum where folks support each other when going on the SCT Journey so we are around if you need us.

moomy has given you a great reply and I also see that you have meet up with  and HopefulMummy123 on the other thread so I do hope that your journey gets you into a good place but as you have been told - there are lots of tools in the box.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

((hugs))

Hi Sonaldia

So sorry to hear you're in this position.  I hope my story will give you hope. 

I was diagnosed with stage 2a HL in 2016. To cut a long story short I progressed through ESHAP, ICE, CHLVPP and Brentuximab. Radiotherapy worked and I was due to go in for a donor stem cell but then I got a virus which delayed things and I relapsed big time. 

As a last resort we self funded Nivolumab which wasn't available to patients in my situation at that time (Pembrolizumab - which is essentially the same - now is). Nivo made me so much better, I was able to live fairly normally for a few months while I was on it.  It got me well enough to have my transplant last year. Unfortunately I relapsed soon after transplant but I had a few more doses of Nivo and been in remission ever since, feeling better than I have in years now!

If there was any way I could have bypassed the salvage chemos in favour of immunotherapy i would have done so without hesitation. Other chemos required a lot of admissions for the chemo to be administered and for secondary infections. They were a bit brutal on the whole.

I believe the lymphoma team at Southampton are now using it very readily with refractory Hodgkin's patients now.  There are two other HL patients I've become friends with at Southampton who also progressed through multiple chemos, finally had Nivo and are now in remission after SCT.

Please let me know if I can help at all.  Wishing you all the best.

Charlotte x

rDear Sonaldia,

My 33 year old daughter has classical HL and was originally diagnosed at stage 4 in April 2018 and received abvd chemotherapy to which she initially responded. However, after the 4th cycle positive response stopped but she was not switched to a beacopp regimen....unfortunately, this was during late July and August and all her medical team were either on holiday or changing jobs so she she was not seen by a doctor until September when it was decided that because abvd was so advanced that she would finish it and then have radiotherapy.

Unfortunately, after a very brief period of remission she relapsed. This year she has had gdp ....she had an unusual and very unpleasant side effect from the cisplatin (loss of hearing and deafness which she is still recovering from) and so this drug was replaced by carboplatin. After two cycles her scan was pet negative and she went on to have her stem cells harvested. At about the same time she became aware of specific symptoms returning similar to when she relapsed and after alerting her medical team it was decided to pause the SCT ...she had another scan yesterday and is awaiting the results ....

She was told she had a good cancer and great emphasis was placed on how successful first line treatment was ...and then after relapse her consultant described her cancer as difficult ...these terms are not helpful ....