Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Refractory HL advice

pop93
Posted by

Hi everyone - I'm new to this community and I hope it's okay but I'm looking for some advice if anyone has it after a real bad news week . I've been told this week that my lymphoma hasn't responded to first line chemotherapy (I've done two cycles of ABVD and three cycles of escalated BEACOPdac, diagnosed 17th June started treatment 24th June). It's not progressing yet but the last bit in my chest isn't going down so is now primary refractory Hodgkin's Lymphoma.

Docs have said they want to do another biopsy first then once 100% confirmed will move me onto salvage chemotherapy (they have stated ESHAP) and if I get remission from that, a big blast of chemo followed by a stem cell transplant.

This is all terrifying for me (considering I was told over and over this is the "good cancer" to get, but that's another issue all together). I've been looking up refractory Hodgkin's when I feel emotionally able to and want to understand my options a bit more. Should I be looking at trials with targeted therapies at this stage instead? 

If anyone has any advice on how to best prepare for and conduct appointments with the doctors I would also appreciate - I feel like they have such a tight timeframe to fit you in at clinic. It's all just presented to you like this is the plan and there's no real room for questions or understanding why this plan is the right one over other options (in my experience). I don't have emails or phone numbers other than the emergency helpline, so I am literally waiting for the 20 minute clinic session each time and it really doesn't feel enough when it's this important. I'm not bashing the NHS at all, it's just making me scared as I'm really wanting to make sure I enter into the next treatment phase with the best shot I've got - and so think this next week or so before it commences is going to be crucial.

I'm also thinking about having to sort legit life stuff out like a will and things. Does anyone have best practices or resources to use? Do I have to go to a solicitor? I'm 25 and so naive to all of this.

Any thoughts or guidance truly appreciated. xx

Thehighlander
Posted by

Hi  and welcome to this corner of the Community although not great that you have found us.

Don't you have a contact number for your Specialist (chemo) Nurse as everyone should have been assigned one?

I had NHL and it also went off the rails so at the time Stem Cell Transplant was the only option on the table, I had two with cells from my brother and tomorrow (Monday) I will be 4 years old and doing great in Remission - so be encouraged.

I am sure that some of the HL folks will be along but we do have a dedicated Stem cell transplants for blood cancers group where everyone who has looked at, gone through and come out the other end of SCT hang out and support each other. There are a number from a HL background...... and yes they are doing good.

You may want to check out our Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply. If you have a look through we do have JJane our specialist nurse in SCT.

Keep talking with us.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

moomy
Posted by

Hi  and welcome, though sad you’re here. 
as Mike suggested, there’s a dedicated group for stem cell transplants where treatments are often discussed in more detail.

our daughter too was primary refractory, diagnosed this very day but in 2004, and her HL proved very resistant! 

I know most places follow the ESHAP to BEAM to SCT option but it’s important to be in remission before BEAM ( the hefty chemo) and the transplant if at all possible. 

you might ask about Brentuximab Vedotin plus Bendamustine (sometimes referred to as BvB)  and if they are used in your unit at all, as they seem to be getting good results in combo. Where are you being treated? 
I confess to getting the raised eyebrow treatment from daughters consultant (Professor John Radford at Manchester’s Christie Hospital) a few times as I asked about treatments which were showing promise while still in trial stages, but he responded incredibly well to the fact I was doing my homework! And even though I didn’t see him for a few years after she at last gained remission, we met in a big cancer hospital in the corridor and he asked how we were doing, bless him, a lovely caring man! 

And a good consultant worth their salary should give you time; it’s YOUR body even though they are trying to get through their work! Take a notebook where you write down stuff in advance and when (if!) they ask if you have any questions, whisk it out and ask, and make sure you get time to write down replies, if you don’t understand because they go into ‘medicspeak’ ask if they explain it so you understand. 

Hugs xxx

Moomy

BadgersFan
Posted by

Pop93,

I’m sorry to hear that you are going through all of this. I live in the United States, so I can’t provide advice on navigating NHS, but I can offer some treatment advice.

I was in a similar situation just over a year ago. I was diagnosed with classic HL in March 2018, had 2 cycles of ABVD, a positive interim PET, followed by 3 cycles of escalated BEACOPP. I had another positive PET scan in September, 2018, including new lymph nodes.

In October, I saw an SCT specialist. The plan was to get me into remission using 3 cycles of Brentuximab Vedotin & Bendamustine, then do an auto transplant with BEAM, followed by radiation and up to 16 cycles of brentuximab vedotin.

The first part of the plan went well. After 3 cycles I was finally in remission with my first negative PET scan (December 2018). We started prepping me for the auto sct, but my bone marrow was too worn out at the time, so I couldn’t produce stem cells. We went to plan B. I had two more cycles of BV (no bendamustine since it is harder on the bone marrow). After this I still wasn’t able to collect stem cells so we went to plan C, which was radiation. I had 3 weeks (15 days) of radiation, ending in March. My subsequent PET scan and a recent CAT scan showed that I am still in remission. After discussion with my specialist we have decided that I don’t need further treatment for now, and I have returned to my oncologist’s care.

I didn’t have ESHAP, so I can’t speak to its effectiveness, or its side effects. I do recommend that you ask your care team about brentuximab vedotin & bendamustine. Please note that I live in the United States, so I’m under a different health care system, however HopefulMummy lives in the UK and she also went through the same treatment as me (she was about a week behind me). She did have an auto sct plus radiation and she is in remission as well. You can read our posts on the “Bendamustine + Brentuximab Vedotin” thread. Moomy was referring to us in her post when she mentioned BvB.

I hope that you are able to get the treatment that you need in a timely manner without having to go through as much trouble navigating the system. I’ll be thinking of you. Take care.

-- Jason - BadgersFan --

Thehighlander
Posted by

, some great replies.

To see all the discussion threads, go to the top your thread and you will see the tab 'Discussions" hit that and you will see all the threads set up by everyone.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

moomy
Posted by

Hi again, ,

I’ve heard of BVB being used more widely that Jason and HopefulMummy on here, as I correspond with HL patients worldwide. And so know of it’s success even with those who haven’t had results with either drug separately. Somehow they work well in tandem! I guess sometime soon there might be a study telling everyone why this is so!

hugs xxx

Moomy

pop93
Posted by

Hi everyone, 

I can't thank you enough for your replies, this is an amazing community and I can see from reading some of the other discussions you're all very active and I hope you know how much comfort and reassurance your posting provides. 

My CNS is part time so I don't have specific contact details and often end up seeing a different CNS (in fact both positive scan result days were with a nurse I'd never met before which wasn't ideal).

However, today has been a turning point I think, where she called me and spoke me through everything that was rushed through in clinic last week in detail and I feel a little bit more in control of the whole situation.

, I'm being treated at UCLH. My CNS said ESHAP is their standard salvage chemo which they have used for years and they have BVB funded should that fail. So hopefully even if ESHAP fails to get me into remission I will be able to access BVB via UCLH - reading a lot of the posts, this sounds like a good thing! I wasn't sure about this until my call today so I am glad to have your comments as knowledge before asking. 

There's also a trial I've seen called Checkmate 744 for 5-30 year olds testing a combination of nivolumab and brentuximab which I have asked about. I just accepted all my other treatment suggestions but this time I'm trying to understand a bit more! I guess you have to advocate for yourself but trust the professionals in equal measure. 

At the moment I am trying to get to the point of being in remission to be approved to move ahead to transplant, crazy how the goals can change, but I am sure I will move over to that thread when it gets (hopefully) closer. Just not sure I can go through 120 hours non stop chemo which is what is involved with ESHAP first... five days solid taking a backpack of chemo drugs home sounds impossible! 

But then I wrote it sounds impossible and read thehighlander's sign off line... it is impossible until it is done!

thank you for the hugs. they were needed :) xx 


Thehighlander
Posted by

So good that you have been able to talk through all this as it does help turn the noise down between the ears....... actually the battle between the ears is one of the biggest challenges in the journey.

Taking each step at a time is important and the best way to keep each step in a box, deal with it them move on to the next part.

120hrs is only 5 days of your life, my chemo required me to be in hospital for the 5 days/nights for each of the 6 cycles, you will get into a rhythm and you will be looking back thinking ‘what was that?’

You are doing great xx

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

moomy
Posted by

I know it sounds really tough, but if it’s of any comfort I remember daughter found ESHAP somewhat easier than ABVD! I know, odd, eh? She was more worried about where she was going to be within the ward system of a general hospital at the time! (A true hospital phobic, was our lass! Somewhat better now though after so much treatment!) 

yes, I’ve known folk do well on Nivo and Brentuximab too. I’m glad you’re at UCLH, they’ve a really good team there headed by Professor Linch. 

hugs xxx

Moomy

Minks
Posted by

Hi pops, 

my husband went through exactly the same as you ...he had ABVD which got rid of all cancer apart from a small 2/3cm mass. So he was put on to BEACOPP and at the end of that there was no change to this mass. Then resistant hodgkins was mentioned as well as non hodgkins etc etc however the senior oncologist did say we can’t accurately diagnose till we do a biopsy on it ...so my husband had a operation where they open up his chest and removed the whole mass ...I was convinced it was cancer as the deuville score was 5 and he had to get an operation ...however it ended up being non cancerous ! Inflammation that shows up the same on the deuville scoring as hodgkins ...so all I’m saying is try not to rush ahead of the process and see what exactly the biopsy says. Even if it is cancerous there is lots that can be done and lots of people who have come out the other side on this site.