Refractory HL and Allo STC

Hi  and welcome to our little corner of the Big Mac Community but sorry to see you joining us and that your HL is being stubborn.

The various salvage treatments used does tend to be full on, but it has to be to achieve the goal and the pains you are experiencing is not unusual as your body is going though a lot and indeed I also had very bad pain in my neck and down my back (my main mass was in my neck and Bone Marrow)

An Auto SCT was never available to me as I could not get into remission to get my cells harvested and actually went into both my Allo SCTs with active lymphoma.

Due to how my type of rare skin Non Hodgkin’s Lymphoma becoming very aggressive I was down to a final roll of the dice as I had used up all the available treatments for my rare skin NHL.

You can hit my Community name to see my long story and indeed some of the others.

I will always say there are other options until they run out ((hugs))

Hi Rachel,

So very sorry you’ve needed to find this group, but those of us who stick around are here to help and comfort. Yes our daughter had primary refractory HL but Brentuximab on its own actually fully worked for her. She’d already had an auto, and Brent was her third trial drug, as it was not then even registered.

She didn’t have GDP but I’ve heard that that and/or ICE which is sometimes used for resistant HL are both pretty tough. 

I gather that the newer immunotherapy drugs do have very good results in resistant HL, so are well worth trying. I am a member of a group specifically for relapsed/refractory HL but on another forum. It’s a worldwide group and immunotherapy drugs such as Pembro and Nivo are often drugs discussed, and are used with some success. 

if your team want to to go through to an Allo, you will need about a 3 month lasting remission, as while you’re on immunosuppressant meds they won’t be able to allow the donor cells free reign to get the graft-versus-lymphoma effect, hence the time needed to allow your body to accept the new cells. 

It is of course, your right to seek second opinions, and i would guess your team may already have consulted others anyway. If this is what you wish I’d suggest Professor John Radford at Manchester’s Christie Hospital, Dr Chris MacNamara at UCLH., and Dr Graham Collins in the Oxford group of hospitals. 

Do keep posting, all help is well worth it also remember that Lymphoma Action (another charity but more specific) can help too, they are on line plus a phone number which is 0808 808 5555, they have information booklets and also a Buddy scheme.

Hugs xxx

Hi Rachel, sorry you find yourself here and I can totally relate to what you're going through. 

in 2016 at the age of 34 I had refractory HL, progressed through ABVD. I went on to have ESHAP, IVE, CHLVPP, Brentuximab - none of which were successful.  I then had radiotherapy and achieved remission but relapsed during the wait for my transplant which was longer than it should have been as I kept getting viruses.  Eventually went onto Nivolumab which is much more easily available now than it was then.  Virtually no side effects and got me into a good enough remission for transplant in 2018. I have relapsed since then and been back on Nivo which worked really well and I'm now almost a year out from my last dose and feeling well and back to looking after my two small children.

I have two other friends who were also treated at Southampton for refractory HL and Nivo was what got them into remission pre-transplant too, having tried everything else.  I didn't have GDP but I know they both found that one particularly tough going. Actually I think it's Pembrolizumab the NHS uses rather than Nivo now but I think they're essentially the same drug.

I was advised after one or two salvage chemos that allo would give me a better chance and although it was extremely tough, it was definitely the right decision. 

I consider it a miracle that I'm here to tell this tale and so so thankful for the advances they're making all the time to overcome this horrible illness.  It's not an easy road but there are plenty of options, please don't despair.  If I can help at all do let me know. 

Charlotte x

Hi Mike, thank you for taking the time to reply, its much appreciated. I will definitely take the time to read more about your story, from what you have mentioned above it seems like a very tough journey but I am so pleased that your final treatment was successful. 

You are also right about the salvage treatments being full on, this is something I hadn't really prepared myself for. But going into round 2 next week, I feel more prepared with stronger anti-sickness meds to hand! 

X

Hi Moomy, thank you for taking the time to reply! I have spent some time reading about your daughters journey and I was so pleased to hear that Brentuximab was successful for her. Your daughter has been through an awful lot of treatment and its so fantastic to read about how well she is doing now. 

Thanks for the info regarding immunotherapy and Allo SCT. I know little info about this as didn't expect to be potentially going down this route but will carry out some research. 

I will also be asking my team to seek a second opinion as I do not think this has occurred yet, well not to my knowledge. I live in Merseyside so not too far from The Christie and from what I have read online so far about Prof John Radford, he seems like a good person to have on board due to his knowledge and experience. 

I will definitely keep in touch and update this thread as I progress with treatment 

X 

Hi Rachel, John Radford is incredibly knowledgable and is actually a lovely man too! I’d highly recommend you asking for your case to be reviewed by him! 
He actually was the person to phone daughter to tell her that Brent had put her in remission, she was actually in a taxi in Paris returning to her tour! And he was delighted!

He has some research available into how to proceed to allo from a CR gained from immunotherapy too. He has also a brilliant research colleague in Dr Adam Gibb too. 

Hugs xxx

Hi Charlotte! Thanks so much for replying and sharing your story. Although its absolutely ****!!!! that you have been through so much I can't express how happy and comforting it is to hear that you are finally at the other side of treatment for refractory HL, are feeling well and are able to enjoy time with your children.

Its very encouraging to hear about Nivo / Pembro as options pre transplant. I had hoped brentux would be the successful treatment for me and must admit I went into a state of panic when it wasn't the case as it has a high success rate of helping people achieve remission when salvage has failed. 

I do think Allo is also likely to give me a better chance, initially again I was concerned as I'd always been told by my team that allo was a back up plan if I was to relapse after an auto. But if anything I've learnt so far is that this lymphoma journey is so unpredictable. 

Thanks for helping to reassure me, I will keep updating the thread as my treatment continues x