Brother with HL - ABVD then eBeacopp

Hi and welcome to the Community.

I had NHL so a different treatment journey but can understand your questioning not having the post treatment scan and not having more treatments - I was the same and asked the question and was assured that it was not needed and doing one would just radiate my body more than was necessary and inflicting more toxicity on my body than was required to do the job..... and they were correct.

There are a number of folks who have had eBEACOPP so let’s see if these folks are looking in and can help you out.

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.

All the very best.

Hello ,

and a second welcome, though sad you’ve needed to find us.

i just listened to BBC Radio 4 where they were talking about reducing chemo for testicular cancer, and I wonder if they are thinking the same way about HL?

i know you’d rather have a PET at this stage, but honestly they will know when they investigate for radiotherapy whether the BEACOPP has done well and they are just ‘mopping up’ now. It was at that stage we found out that all daughter had been through hadn't worked that well (by then she’d had 6 cycles of ABVD and then ESHAP and BEAM with stem cell support - an auto SCT - shes still here to tell the tale!) 

a PET, as Mike says, does increase the radiation load and maybe at this stage they feel radiotherapy needs to be targeted better and therefore a PET might interfere? I’m not sure. I think you have to be reassured that his team know their jobs and will treat him thoroughly according to his best interests and position.

do keep posting, we try to help carers as well as patients! 

Hugs xxx

Thank you both for the prompt replies and reassuring words. I have done extensive research re: eBeacopp post ABVD and you are right moomy they are recently trialling 2 rather than 4 cycles, but I believe most doctors would normally do 4. However, due to the fact that my brother has only one kidney, they are probably trying to reduce the toxicity.

I really hope it worked and I am looking for signs that this is the case, but he didn't really have any symptoms and having to wait at least another 6-7 weeks will be very stressful. 

I will keep the forum posted. 

Hi

I read lots of research, which becomes obsessive and takes stupid amounts of time, but indeed several major studies involving hundreds of HL patients have been undertaken to compare Progression-Free-Survival rates of different regimes eg ABVD then Beacopp if interim-PET Positive, or Beacopp versus EscBeacopp, or Beacopp x 6 or 8. But I have mainly studied Advanced HL hence the higher regime numbers than he is being considered for.

So the experts know best, they indeed want to minimise treatment so they get the balance right between not over-treating it and getting rid of disease with a good safety margin. They will know the specifics about your brothers disease, the SUVuptake, the blood biomarkers etc, and they will know what is the best regime for him based not on theory but on sound evidential study. 

Of course there are no guarantees, but they will ensure he has every chance of getting rid of the disease.

Thank you for the reply Nick. I know what you mean re: extensive research and how much time it takes...my brother's doctor offered to hire me as an assistant and I had no clue about HL 5 months ago.

I believe my brother's HL is also advanced (initially 10.5cm bulky, mediastinal with a 6.2 SUV interim PET) that's why I was surprised that they only did 2 eBEACOPPs after 2 cycles of ABVD. 

Since my last post, the doctor changed her mind regarding PET 3 so he is now doing one tomorrow, before radiotherapy begins. Words cannot describe how stressed I am.  

Hi ,

I was much the same though I worked in the NHS (as an Occupational Therapist) before retiring so knew how and where to research, even having daughters consultants eyebrows rising a few times! Research done carefully can help but can also scare you rigid, it’s truly a balance and don’t forget that your brothers doctor has had years of qualifying, and haematology is one of the most challenging specialisms.

hugs xxx

ps daughters mediastinal mass was 13x13 cm when she was diagnosed! And she’s ok now though her HL was resistant to start with! 

I agree research can be terrifying, infact I am still terrified, absolutely mortified. I look at my now healthy-again lad who was Stage 3B but feel like I am just waiting.

I've literally written a study myself, collating everything there is about HL............the different chemo regimes, staging, blood counts, PFS/DFS/EFS differences, Negative Predictive Values, Deauville scoring significance and semi-quantitative QPET scan interpretation, risk factors including TMTV, IPS scoring system, and results from loads and loads of studies.

What research states depends on so many different things - what chemo regime is used, and what date the research you read was carried out.

Keep strong if you can, I like to come on here as there are so many great people.

Thank you both for the replies and the reassurance.

So his third (not final) PET result after 2x ABVD -> PET score 4 -> 2 x eBEACOPP is still a 4. It’s so terrifying not getting just a tiny bit of good news... 

Not sure what happens next - the plan was to start radio on 23rd. he will visit his doctor tomorrow although she had said that she only wanted to check if it had spread at this stage before proceeding with the radio. Good news I suppose is that it hasn’t spread... 

I am still puzzled as to why he only did 2 cycles of eBEACOPP rather than 4 as he had bulky disease (10.5 x 7 x 3) so maybe a 4 after 2 eBEACOPPs was actually expected? Not looking for answers, just sharing my thoughts :) 

goodnight all 

Hi Oceanico

So sorry its not worked as hoped so far, yeah a bit surprised they did'nt do 4 x Beacopp, as bulky disease takes longer.

But they will know where to go next, and which option is best.

Stay strong mate. I know thats easy words to say.

Hi ,

as said, your brothers team will know what’s best at this stage. There are still options open for further treatment if needed, and of course they have to watch for any relative toxicities of chemo, in case further might be needed. 

Please try not to worry overmuch, it’s not productive for your state of mind and won’t help in the long run, his team have years of study and practise behind them. The best you can do is being there for him as I’m sure you are.

our lass went through loads to get where she is now, (it’s on my profile) and although there are occasionally problematic results from all her treatment, she still absolutely loves her life! 

Hugs xxx