Preparing for BEACOPP treatment

Yes, my son had this treatment.Did you have your first line of treatment? X

Hi ghaz, no not yet. The long list of side effects is very scary, so I'm hoping I can get some first-hand experiences to calm my nerves. How was it for your son?

Hi LaurenDebboa warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have HL but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma / Blood Cancer ‘type’ is different I understand the challenges of this journey well.

There are a number of folks who have had BEACOPP so let’s see them pick up on your post. BEACOPP is often used as a second line treatment but it sounds that your HL is aggressive and die to your age you will be able to deal with this well.

You may find this link helpful Top Tips for the day of your Chemotherapy

Always around to chat.

Don't panic and stress out , the treatment is harsh as it is intense but you will be fine after the treatment .Just make sure to keep in touch with your allocated nurse and don't let them delay in your treatment as it is aggressive but the outcomes are very promising.Do you have some to look after you during the treatment? Xx

Yes - that's the impression I got from my consultant. Hopefully it will be fast and effective!

Thanks for sharing the link, I will definitely take those tips on board for my first day in the chair.

Lauren

Hi again Lauren LaurenDebbo, sorry for taking so long to get back to you be we have been away for a long 10k walk in a local forest. I say this as an encouragement as there is actually 'life' after treatment. As I have said I have a very rare type of Non Hodgkin's Lymphoma so being rre means there is limited treatments available (see my profile) but here I am 6 years 8 months out from my last treatment and living the dream.

As a way of some further encouragement you may want to listen to this link Kicking on - Robbie Fergusson.

I also volunteer for Lymphoma Action. Back in Aug 2021 I did a Lymphoma Voices Interview with Robbie Fergusson who was diagnosed with Hodgkin's Lymphoma back in 2013 at the age of 20. Robbie goes on to talk about his diagnosis, treatment, recovery and eventually getting back to playing professional Rugby Union, playing for the Scotland 7s International Team and representing Team GB in the Rugby 7s Team at the Tokyo 2020 Olympics.

Enjoy and be encouraged ((hugs))

Hi,

I am currently about to start my 5th round of BEACOPP and in general I have found it quite predictable. Although I get super tired and the steroids have caused me some weight gain, there are like a few days where I feel just as strong and normal as I did before. Just don't push yourself too hard, and keep an eye on yourself. Someone gave me great advice and write down all of your symptoms and anything that happens, because it loops... I can now predict on what day I will get indigestion, what days I will be tired etc (it obviously occasionally throws some spanner in the works). Tips for the treatment. Make sure you always have something to read, my place let's me nap but it's hard withall the beeping from the drips, charge up that phone or tablet to watch something as it can get super boring!  It can be quite daunting especially when they keep giving you lists of stuff to worry about, but I find the only important thing is being sensible about being out etc. The only things I got were the hair loss and stomach stuff, so stockpile on rennies ahahah. Take it easy and be kind to yourself.

I have just finished my 4th cycle of beacopp advanced chemo. It’s not easy but you will get there.  Drink lots of water and try to eat something.  I have/had lots of side effects  severe sickness, numbness in my fingertips, skin rash on my chest, hair loss, jaw pain, constipation was a big thing. Never talked about so much shit  trouble eating and drinking, confusion oh the list goes on, it sounds really scary but it’s not all at once and you deal with each thing as it comes, tell your nurses and they will sort out medication and it will help, no pint suffering die no reason. Some days you will want to do everything and the next you will be wiped out, learn to do what your body needs, nap at any time day or night. I hope you’re keeping well x

Hi Lauren, 

maybe you have started treatment now. Im also 25 and started BEACOPP treatment recently. Im about to have my scan and start my third cycle next week. It is the more aggressive but is supposed to be all over a lot quicker. It is a very common treatment plan now. after my first cycle I did get neutropenic sepsis but if you are taking your temp everyday (I take it morning and night) then you will catch anything early. they will just treat with antibiotics until proven it’s not an infection. also overall, it’s not as bad as I thought it was going to be. That’s not to say it’s easy and at times it’s difficult but I really thought it was going to be a lot worse. I advise you to keep on top of the anti sickness because once I feel sick it’s much harder to budge than preventing it! also those g-csf injections can cause back pain after a few days so stay on top of that too before it gets worse! mine got very bad :( also Get a fan omg the sweats can be bad LOL just a few things I’ve found a long the way! I hope you are doing well through this 

Hi Lauren - I have just logged into this forum after a short time away. I know you are already into treatment but wanted to tell you I myself received BEACOPP-DAC treatment -- so i am happy to chat with you any time!

It was definitely more aggressive in comparison to ABVD, time consuming, and my hair fell out much faster -- but with the anti nausea tablets that helped curb a lot of the post treatment blah feeling. 

How are you feeling now?

Sending lots of love your way

xx Jennifer