Escalated BEACOPP dac

Hi Irun,

Sadly, although we have had folk who needed BEACOP, they have moved on and carried on in remission. 

Have you tried Lymphoma Action for information? It’s available on line and on the phone too, in 0808 808 5555 it’s a smaller charity than this one but very friendly. 

Hugs xxx

Moomy I suggested this site as the are very few patients posts on lymphoma action at present its mainly folk worried they may have lymphoma, their online community have never got back to where it was before the relaunch.

John 

Hi, put BEACOPP into the search tool and this will take you to all the posts. Have a look round and try replying to some and see if any of the members are still looking in.

I had ABVD but I've spoken with a YouTube vlogger who had BEACOPP. 

ABVD is a slightly milder treatment but is given over a more prolonged duration. BEACOPP is a more intense treatment but gets rid of it quicker. 

In her words

"I went straight for Beacopp to 'blast' it all out of the water, plus it was a shorter treatment time."

Here's her channel

https://www.youtube.com/channel/UCAHTBATGJQEhS1g1ebU2Aeg

She has a few videos detailing her treatment experience.

In countries like Germany I believe BEACOPP is the standard first line treatment instead of ABVD, whereas here its normally reserved as second line.

Hope that helps

Best of luck

Hi

My son was diagnosed with stage 2B last September and began treatment on ABVD chemo. Following a scan in January he wasn't clear and so moved to BEACOPP. He'd had absolutely no side effects from ABVD other than hiccups! 

He actually managed the intensity of the regime very well and the only side effects were an upset tummy and mouth ulcers but when he got to around day 12 he became neutropenic. This isn't uncommon as I understand but please be aware of any changes to how you feel and your temperature even if you think it isn't worth noting.....it is! 

After his second cycle the same thing happened but this time he had an infection so was in hospital a bit longer. 

The good news is though, he is now in remission so BEACOPP works! 

Good luck, be strong, and know you will get through this.

Hi Irun.

I was 25 when I was diagnosed and after a couple of round of ABVD they escalated me to BEACOPP. I actually had the choice but the research suggested, whilst slightly more damaging to the body in the long term, it’s a better option for trying to get rid of the cancer. It worked, 3 rounds of BEACOPP then I had a 2 or 3 weeks of radiotherapy and all was gone.

That was almost 7 years ago now. 

In terms of side effects, of what I can remember, it wasn’t too dissimilar to ABVD, a bit of sickness but I managed to find the right blend of anti sickness meds so keep trying different options if you’re struggling with that. Fatigue was an issue but the main thing was how low my bloods went and had a few hospital with neutropenia. You’ll probably get given some small self injecting thingys which help keep your bloods up, they aren’t bad, just a quick jab in the stomach, hardly a pinch. Obviously the hair went and good shout with preserving fertifility as that’s pretty much a guarantee after BEACOPP.

I actually wrote some blog posts whilst going through it, not read them for a long time but that might give you a bit of an idea - https://samforthblog.wordpress.com 

Anyway, hope that helps. Let me know if you have any specific questions.

Cheers, Sam

Hi Irun,

I’m sorry to hear that you are going through this. I had 4 cycles of BEACOPP back in 2018. This was after two cycles of ABVD and a positive interim PET.

To answer your question about side effects and coping. The first side effect for me was nausea on day 1 of each cycle. The very first day that I had it I started to feel nauseous on the ride home and it lasted until late at night. I had a minimal late dinner. I was very worried because I had to take the meds at night on a full stomach (or it would cause more nausea). I was also worried about what to do if I threw up after taking the meds. Should I take them again? But I managed to take the pills and kept them down. I had not felt nauseous on ABVD and was worried that I was in for 3 months of non-stop nausea.

I had extensive conversations with the nurses on day 2. First thing, they said that if you throw up after taking your meds, don’t take another dose. We also came up with a plan for the nausea. For subsequent day 1s I took zofran/ondansetron before going to the appointment. I had them give me compazine a couple hours before the zofran would wear off, and then I had another zofran 6 hours after the first dose. I continued with both the zofran and compazine through day 4 or so. I never had any more chemo induced nausea during the rest of the treatment. You have to be careful with the timing on day one since you will need to get three doses of zofran in (you need to take it at night at least an hour before the procarbazine).

There are a lot of meds to take with BEACOPP    I ended up putting together a spreadsheet that laid out the pills I needed on each day of the cycle and what time to take them. There were pills to take on MWF, days 1-14 but not on 1-3 and 8 since you got those at treatment, days 1-7, pills every day, and some twice a day. Pills to take an hour before bed and pills to take before bed. Plus pills to take as needed. I then used the spreadsheet to fill up my pill boxes. In fact I ended up using two boxes. One was in the kitchen and it had the pills that I would take at meal times  I kept the other in my room and it had pills to take at night. I was able to load two weeks of pills into each box.

Be prepared for your blood counts to get really low, and be worse each cycle. During my third and fourth cycles my white blood cells were below the threshold of measurement by the machine that does the test. That lasted for about 5 days each cycle and I got painful mouth sores and had to go to a more liquid diet. I also needed 3 red blood transfusions and a platelet transfusion. For cycle three I was in the hospital for 5 days because I also had a fever. For cycle four I avoided the fever but asked for extra appointments every other day starting on day 10 so that I could get regular CBCs and any required transfusion (one red, one platelets it turned out). I had these extra appointments until my numbers came back up.

Compared to ABVD you get a lot more infusions. By day 8 of the first cycle you get as many pokes as the first two cycles of ABVD combined. I recommend getting a port or picc line installed. It will make things a lot simpler and you can avoid the frequent needles. You also avoid vein damage to your arms.

You will need to be careful with your diet because of the procarbazine. You need to avoid foods with tyramines. That is easier said than done since foods produce tyramines as they age. There is a long list of foods to avoid (google low tyramine diet). Even leftovers of good foods build up tyramines after two days. So you also need to make sure that your food is fresh. The reason for avoiding tyramines is that their presence can cause blood pressure spikes. Your body naturally breaks down excess tyramine, but the procarbazine interferes with this so the tyramines will just build up in your body over time. I had to avoid tyramines the whole time that I was on beacopp plus 3 extra weeks at the end. That was by far the hardest part of BEACOPP. (Note that I took this more seriously than most people because my mother had cancer when I was a child and she ended up having a serious stroke due to her treatment that left her completely paralyzed on one side of her body).

You should get neulasta shots on day 9. These can cause a tremendous amount of bone pain. You can avoid this if you plan ahead. Starting a couple days ahead of the neulasta, take Pepcid AC (my oncologist had me taking this twice a day already to cut down on inflammation iirc) and Claritin D and take these  until about a week after the neulasta. 

You will likely lose all of your hair. Mine had thinned on ABVD, but the hair on my head started coming out in clumps during week 3 of the first cycle. By the end of the second cycle I didn’t have any hair anywhere.

Those are the main things that I remember and the tips I have for getting through it all. I’ll be wishing you well. Be careful about germs, especially with the Coronavirus out there. Wash your hands regularly and avoid other people. Take care. 

Hey there

I had beacop-dac, finished in September. I didnt have any issues at all really apart from the day 1 sickness. I didnt get any infections, didnt require any transfusions and did it without a picc because they wouldnt give me one. 

Always happy to chat. I dont really come on here. Theres a facebook group for hodgkins that's really good and a lot of people that have had beacopp! Xx

Hello, 

Thank you very much for all this information. It is really helpful and seems to be some great advice there. Cycle 2 was a lot better thanks to a different anti-sickness drug. I think day 1 will always be the hardest. 

I'll look into the diet, being extra careful at the moment.

Thank you again, and take care. 

Hi, 

Thank you so much for this. I shall have a look at the blog. 
We seem to have got the anti-sickness medicine right this cycle, fingers crossed for the next one. 
If I have any more questions, I'll ask, thank you. 

Lisa