Escalated BEACOPP DAC

Hi Craig and welcome to the Online Community but as always sorry to see folks finding us.

I am Mike Thehighlander and I help out around our various Lymphoma groups.

I had a rare type of NHL but I do understand the rollercoaster you are on and I am sure that some of the HL folks will pick up on your post.

Based on my 20 year treatment journey there are lots of tools available to move these conditions in a positive direction - positive, meaning kicking this into touch.

20 years back I was told I would never see remission and it would get me some day....... with no click on it.

Zoom forward to September 2016 I was told I was in Remission and NED (No Evident Disease) so be encouraged.

The main thing you need to ‘get’ is that you actually can’t control how the treatment is working but you can control the mental battle in all this. A good consultant friend once told me “a positive outlook adds a good 20% to the effectiveness to treatment”

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.

Let’s look for some of the HL folks to co e along with first hand experience.

All the very best.

Mike,

Thanks for taking the time to reply - I really do appreciate it.

Congratulations on reaching remission. Especially after so long. You must have some mental strength and courage.

Thanks for the tip re: my profile. I’ll get that updated.

Hi again Craig, we all have to do what needs to be done to get through this journey........ even during the dark times it is all about keeping your eyes fixed on the greater good in all this.

Hi Craig,

BEACOPP is tough, and can lead to more difficulties coping with the chemo but is used far more widely in parts of Europe than here, as it’s really effective. I sometimes wonder if it might have worked with our lass, had she been diagnosed later than 2004. (However, she’s still here and in remission)

I guess the main thing, as Mike has hinted above, is to get your head down, get a big circle of positivity around you and think of the big light at the end of your present tunnel of chemo. You’ll get there! 

hugs xxx

Hiya,

Wow... I had a read at your bio and that’s super reassuring. 

BEACOPP is definitely more taxing than ABVD, however, more than happy if it kicks this into touch.

:) 

Hi Craig

My 15 year old son had Stage 3 very similar to you, largest lump was under his arm at 6 x 5 cms, but also above his collar bone on the same side, and a tiny bit in the other side of his collar bone, and also like you in his spleen. There was also a tiny bit in his mediastinum but they couldn't say whether this was just inflamed or diseased.

He had OEPA-Copdac, which is the chemo used in UK for paediatric patients, and its more like Beacopp than ABVD. If you are still PET-Positive at the end of chemotherapy they can use radiation to get rid of what's left. Also, it can take a few months to calm down, I read a recent study where HL patients that showed as still PET-Positive at end of chemotherapy showed as PET-negative after 2 months in 50% of those cases.

As others have said, Beacopp is a harder-to-take chemo regime, but very effective, in over 90% of Stage 3 cases, compared to ABVD which is about 80% but easier on the system. Only one-third of Advanced HL (Stage 3-4) patients were PET-Negative at interim-assessment in the huge EuroNet trial for paediatric patients using OEPA-Copdac, but in that study only Deauville 1 and 2 scores were considered PET-Negative, whereas now 1-3 usually are at interim-assessment, so it gets complicated.  I'd assume its not dissimilar for adolescents, so hopefully you are nearly there. As its more advanced,it takes longer to get rid of often. Hence you are having the Beacopp cycles.

But obviously, your team will monitor how it reacts, and these days they have a number of back-up plans for each circumstance, because each individuals lymphoma reacts differently to chemotherapy.

I was a real wreck, I admit. But i'd remain confident, positive and calm. If you can. Like I wasn't (:-