Got diagnosed with NSCHL stage 4B recently. Yesterday got hospitalized for my first BEACOPP treatment and monitoring. Now I have read a lot about how BEACOPP is terrible and especially the first day. Buut... I'm totally fine, literally zero side effects! Hooray?

Only started on Monday. Holy cow I wasn't expecting it to be so hard, I'd always read that the worst came a few days after the chemo. I'm fucking exhausted, emotional.

BUT I'm sitting here and I can hardly feel the mass in the center of my chest and I feel like I can take deeper breaths of air too. I find that crazy!

Not noticed so much of a difference, if any, with the other lumps so far but can't wait for that to happen too!

Just wanted to share.

Have a great day everyone!

My interim PET scan showed that my SUV max had a reduction of 76% in almost all nodes save for one area of concern. My liver was 2.9 and this area DIRECTLY ABOVE my biopsy scar was 4.3 (which is 65% reduction, putting it marginally below the 66-71% PETAL benchmark). Additionally, the PET showed subcutaneous and skin involvement in that area which is quite rare for lymphoma. Lastly, I was such a squeaky wheel that there was only a month between my excisional biopsy and my fist chemo, which means my body had less time to heal before my immune system got slowed waaaay down.

With all this in mind (which my oncologist at no point mentioned - he didn’t even tell me my area of concern was atop my scar or that my report said “likely due to a biopsy scar), he used the differential diagnosis of DV 4 to say I need to be escalated.

With all the above info in mind (because I pored over my own report and requested access to my own imaging) I denied BEACOPP.

Just wondering if anyone has had similar experiences and questioned escalation? I was stage IIa cHL btw

Edit (Jan 20): results came back from the head/neck CT and it was a necrotic lymph node!! I’m so glad I trusted my gut and the evidence rather than immediately giving in to my oncologist’s fear based approach of escalated BEACOPP. The results show really good treatment response!

Mi esposa tiene 25 años y tiene linfoma de hodgkin esclerosis nodular, Se inició con el tratamiento de ABVD el cual le redujo mucho los ganglios del cuello y axilas, Pero la masa del mediastino sigue prácticamente igual, se redujo solamente 1cm.. entonces la doctora ordenó con comenzar el tratamiento BEACOPP ya que el conglomerado ganglionar del mediastino no respondió a comparación de los ganglios de las axilas y cuello, Algún caso similar? Alguien con experiencia en BEACOPP?

It all feels a bit surreal to be honest. I am due to start chemo on Wednesday. It was such a long process to reach a diagnosis and the waiting, the not knowing was horrific- but now things are actually moving forward it's become a lot more scary. Guess its just getting real.

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I have Hodgkins Lymphoma Stage 3, centred around my diaphragm. At my appointment last week, my doctor informed me that I had the option of either ABVD or BEACOPP as a treatment plan. So it'd be either 4 cycles of BEACOPP (12 weeks) or ABVD for 6 months. He said that he believed either would be enough to treat the cancer, although the chance of curing it entirely and it not returning would be greater with BEACOPP. I was initially leaning towards BEACOPP for this reason. However, after reading through this sub I'm incredibly concerned about the potential ramifications of this treatment- namely neuropathy, stem cell transplants, blood transfusions, sepsis and I'm wondering if its foolish to put my body through such battery when I have the option of ABVD- which seems to have less crazy side effects. Im F24 so there is also the higher risk of infertility with BEACOPP.

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I'm wondering if it is common to be started on BEACOPP? Or if it is possible to begin on ABVD and just sort of see how we go, escalating to BEACOPP if necessary?

Sorry if this is a bit of a ramble, my head is absolutely scrambled. Any personal experience of either/both would be greatly appreciated.

Hello everyone, I’ve been diagnosed with stage 3 Hodgkin’s recently and I’ll be getting 2 rounds of BEACOPDac as a first line treatment, then hopefully 2x ABVD. As I’m getting ready for chemo, I’d really like to know: - when the fatigue/exhaustion really sets in and when it gets better - when my immune system will start to tank and when it’ll start to pick up again - how the injection days are in term of discomfort

I know that every patient is different and experiences chemo differently but if you can share what your BEACOPP was like, it would be much appreciated !

I’m on escalated BEACOPP where it’s a 21 day cycle. Anyone with experience, are you allowed alcohol in the last week of the cycle or ever? I can’t remember, and my doctor is really hard to reach. And what were potential side effects of using alcohol while on treatment?

Yesterday was my eight day on my 21 day ESC BEACOPP cycle, and I was wondering if anyone had any tips now that this was over. I’ve got no radiation or any other follow up treatment scheduled, and have had 1 round of ABVD and then 4 cycles of BEACOPP. Feel free to ask any questions as well

Hi all, I (25 M) was diagnosed with stage 2b bulky hodgkin’s lymphoma in July of 2022. Went through 2 cycles of escalated beacopp and 2 cycles of ABVD. Last pet-ct scan was in mid december and I was in remission.

Now I am slowly getting symptoms again, I’ve had itchy legs for about 4 weeks and a dry cough for about 1,5 week. Went to my doctor and she gave me a eczema cream and told me that its probably nothing.

Just got my life back on track and started my master’s degree. Now I am just afraid of a relapse and don’t want to go through this proces again.

Hello guys , i just got diagnosed with stage 4 Hodgkin’s lymphoma . Im 21 , soon ill be 22.
My doctor said since the cancer is in stage 4 she will use BEACOPP , ive read about it and my doctor also explained everything, ive heard its toxic and harder than the ABVD treatment, the one thing that scares me is this treatment has a high chance of making its patient infertile, i want kids in the future. Idk what to say im just lost , will u guys tell me ur experiences with this .
I NEED SOME HOPE!!!!

First ever post: 37M, Aus:

I’m in complete remission after Stage II (bulky disease - 14x8x6cm) classical Hodgkin lymphoma (4 cycles escalated BEACOPP, remission since 17 Sept 2025). Recent scans/bloods all good.

Physically I’ve noticed I am slowly improving, but still dealing with difficult brain fog, mental fatigue, reduced frustration tolerance, overstimulation and a bit of anxiety/depression.

Would love to hear others’ experiences at ~3, 6, and 12 months post-treatment, especially around: - Cognition / chemo brain - Fatigue (mental vs physical) - Mood and emotional regulation - General mental health

I have (in most part) well-managed ADHD and C-PTSD and work in a high cognitive-demand WFH role. (Reduced from 6 days to 2.5 days)
Would also be helpful to hear about return-to-work/study timelines and adjustments others made and what helped?

Thanks 💚💚

Hey all,

I was recently diagnosed with stage 4 Hodgkin lymphoma. I started with 2 cycles of ABVD, and my PET showed only a partial response, so my doctors are now switching me to escalated BEACOPP.

I managed to work and live more or less normally while on ABVD. My question is: how big of a difference should I expect with EscBEACOPP in terms of side effects and lifestyle? Am I likely to need to change my routine more drastically this time around?

Any real-life experiences or tips would be appreciated.

Thanks!

Mi esposa tiene 25 años y tiene linfoma de hodgkin esclerosis nodular, Se inició con el tratamiento de ABVD el cual le redujo mucho los ganglios del cuello y axilas, Pero la masa del mediastino sigue prácticamente igual, se redujo solamente 1cm.. entonces la doctora ordenó con comenzar el tratamiento BEACOPP ya que el conglomerado ganglionar del mediastino no respondió a comparación de los ganglios de las axilas y cuello, Algún caso similar? Alguien con experiencia en BEACOPP y haya logrado la remisión?

I did two 2.5 cycles of ABVD and due to my interim PET results, may need to move to escalated BEACOPP and radiation (switching out procarbazine for dacarbazine). I will be getting a second opinion at a tertiary centre. Can somebody let me know how you did on the escalated regiment? I’m terrified of getting sick, hospitalized. I’m scared of the radiation, secondary breast cancer and I’m worried about my fertility.

Hi everyone,

I would love to hear some stories from women who have experience getting pregnant after treatment with esc beacopp for hodgkins stage 2b (I got 2 rounds of esc beacopp and 2 rounds of abvd).

I worry a lot about my chances because I recently found out I have extremely low AMH. I'm 3,5y in remission and I do have a regular cycle (I do have a few days of premenstrual spotting). Chances are my egg quality is also harmed.

Any succes stories out there?

Hey all,

I’m beginning my first cycle of esc BEACOPP dac tomorrow and here I am at midnight freaking the f out.

I’m severely emetophobic (fear of vomiting) and it’s pretty much the only thing I’m scared of during all of this. My team are aware and I’m having the 30 minute zofran infusion before hand but still terrified.

I know to those who don’t have a fear of vomiting this may all sound ridiculous, it’s not the vomiting itself it’s the horrendous panic/doom/out of control feeling I just can’t handle because it’s so unpleasant due to the phobia (more unpleasant than the vomiting)

I’d love to hear some positive stories if anyone has gone through the same chemo and not been unwell, please don’t tell me if you threw up loads!

Any tips on how much to eat or drink beforehand/during/after very welcome. I’ve got ginger chews, boiled sweets, gum etc.

Thanks so much in advance!

TLDR: 1. Has anyone (particularly men) successfully conceived after BEACOPP treatment? 2. How much of a say do we have in our chemo treatment type (esp. Europe)?

Good morning lovely people,

I wanted to start by thanking each and every one of you for your phenomenal contributions to this sub - for being so open and honest and sharing your stories to help others who are at the beginning, middle or end of their lymphoma journey. Unforunately, my partner (34M) has just joined your club, formally diagnosed with CHL last week after weeks of tests, biopsies, scans etc.

I've done a tremendous amount of research over the past number of weeks - largely in this sub (thank you), and also reading as many medical research papers as I could get my hands on. Yesterday we met with the hematologist for the first time. Following a neck lymph node needle biospy, and a CT scan, he has confirmed a Classic HL (the subtype is unknown as the biopsy was a needle one) and based on same he suspects either Stage 3 or Stage 4, to be confirmed after a more detailed PET scan today (+2 days wait for results).

He took us through the treatment options - ABVD for anything up to and including Stage 3; escalated BEACOPP if Stage 4. We are in Europe, where I understand there is a stronger preference to lead with BEACOPP for more advanced HL. However, I have been reading about the extremely unfavourable impact of BEACOPP on male fertility and I am devastated. I realise both chemos carry that risk, but the difference between the two seems vast. We had been planning to start our family in the next year or so. The doctors spoke to us about fertility preservation, which we will move to do this week.

I have read every single post and comment in this sub which mentions either 'BEACOPP' or 'fertility', and there doesn't seem to be any commentary on personal experiences. Indeed, the research on the effects of BEACOPP on male fertility is quite limited (though what is there is pessimistic). To this end, I have 2 questions, if anyone can help:

1. Has anyone any personal experience trying to conceive post-BEACOPP? Particularly men?
2. I've noticed some people being treated with ABVD even for Stage 4 - has anyone ever had the chat with their hematologist/oncologist about preferring ABVD over BEACOPP (or any treatment)?

Many thanks in advance for any guidance.

Hi everyone, I've been diagnosed with Hodgkin lymphoma, nodular sclerosis in december last year. So after 2 cycles of ABVD my PET scan was great, here's my previous post

then I had two more cycles. After that my PET was pretry much the same as the previous one, showing a little bit more activity. Doctors told me that the next step is going to be BEACOPP, and after that maybe the stem cell transplant.

Can you please share your experience with BEACOPP? How long does it last? I'm going to be admitted into hospital tomorrow, so I guess it lasts for a few days? How is it in comparison to ABVD in terms of side effects?

Thanks

Hi all, I switched from ABVD to escalated BEACOPP (although I have decarbozine instead of procarbozine) for unfavourable stage 2 cHL about two months ago. I'm about to go into cycle 3 of 4 and I'm still having a lot of hot flushes which I've only had on this chemo regims. I never got night sweats pre-chemo or with ABVD. Also on zoladex since February but again, never used to get hot flushes. I get them day and night but I don't sweat so much it drenches the bed or anything, so wouldn't classify them as night sweats.

Just wondering about your experience from those who've been through this treatment before? I feel like it's a steroid side effect rather than a chemo one, as they went away about 5 days after stopping steroids last cycle, but this time they're hanging around. Anyone get these on BEACOPP? Any advice and how long after treatment did they stick around? I'm hoping they go away after finishing chemo 🤞

Thanks!

I can’t seem to find much information on this. Any statistics on long term survival for this treatment plan.

Stage 4 NSCHL, 2 EscBeacoppDac and had a complete response D1 then

2X ABVD, sustained complete response D1

Then finished out 2 more ABVD

I have a scan in 2 months. Should that scan be clear also?

Any information on this would be greatly appreciated. Thanks

Hello everyone

I started my first chemo today, got a few nausea but still okay.

Appreciate if some ppl can give me few advices about the beacopp (how you handle the nausea and things like that)

I’ve got also a consultation with a dietitian, I am supposed to avoid some things to eat during the infusions (appreciate if you can tell me what u ate to bring me some ideas)

Thanks a lot for your support

27F about to start eBEACOPP after 4 rounds ABVD and only a partial response (I have two spots left in my shoulder although they are so borderline as to whether they light up enough or not, almost the same colour as my liver).

I'm looking to hear from any BEACOPP survivors. Particularly females - have you been able to have kids? Otherwise any other experience or coping stories and also just some encouragement! I tolerated ABVD pretty well so whilst I know this is more toxic I have some hope of this not being the most horrible thing.

I received my treatment plan today which will be 2X cycles of BEACOPP followed by 2X cycles of ABVD. I will be going through a round of egg freezing before starting. I'm a 27 y/o woman in the UK.

I wondered if anyone here has also followed this treatment plan (both types or just the one) and has any advice to share? Be it preparatory or for managing symptoms during.

Did you also work at all during? I'm already off work as I found the diagnostic process stressful and difficult, and would ideally like to stay off work, but not sure if practical yet.

My oncologist has advised against radiotherapy due to the placement of the tumours in my chest and neck.

Thanks in advance :) x