Starting BEACOPDac in new year

Hello! I have just finished 4 cycles of Escalated Beaccopdac. For me it has been quite easy but it is different for everyone! The first day of each cycle is the longest and for me the first day of the first cycle was the worst. To be honest I think all the stress has contributed to a sore stomach after that day. Apart from that, some mouth ulcers before cycle 2 and bone ache after the white blood cell injections (it means it's working) I didn't have any issues. I had the energy to go for walks and eat properly. Again it depends on each person! All the best for your treatment !

Hi Kodae and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - NOS NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Basically chemo is chemo what ever name it is given……. My main chemo back in late 2013 into 2014 was full on as I had to be in hospital 5 nights/6 days for all of my 6 cycles on my 2 IV pumps 24/7 for over 120hrs each time……. and honestly I did ok.

My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

You may find the link below helpful…… as it’s a collection of top tips that is on the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

Top tips for the day of your chemotherapy

These are some of my simple tips.

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.

But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when your immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must call it in……. This is especially important with regress to Sepsis as sepsis doesn’t always cause a high temperature though, especially if someone is taking steroids……. below 35°C could be a sign of infection which your immune system may be unable to fight so this needs to be called in.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

Based on my long experience we were not  hermits….. we went out……. our mental health is importantly to consider. Just not crowded places like supermarkets, restaurants etc. We would meet up with family and friends in a quiet corner of a garden centre….. fresh air is a good healer……. We had family (4 granddaughters) and friends visit the house. The main thing is check that folks visiting are not carrying a bug…. coughing, sneezing etc….especially children. We would open the windows and let some fresh air in, good hygiene control…… We did this all the way through my main 2 years treatment 5 months of Chrome, 45 sessions of radiotherapy and 2 Allo (donor) SCTs….. and I did not have one infection.

((hugs))

Hello,

I am 32M, did escBEACOPdac from late March to early June. 

As your medical team have probably mentioned, it is an intense regime, you get high doses of several drugs plus there are frequent hospital visits which puts a strain too as noone likes to go to hospital so frequently ;)

First three days of the cycle were not good days (first day in particular), loss of apetite and overall just feeling like you have the flu, then slightly better from day 4 to day 11 (second week bleomycin and vincristine were okay). Day 12-13 which would be the Friday and Saturday of the second week - for me these days would be when my red blood cell count and hemoglobin would be the lowest so I was extremely fatigued and would stay at home sitting in the sofa for the rest of the day. I was feeling fine otherwise just very tired, a bit like if you try to climb Everest without oxygen.

Then recovery from day 15 onwards, the last 3-4 days before the next cycle were decent, I wouldn't say 'as normal' but as the body makes red and white cells again you feel the energy and I managed to do quite a few things over that weekend. It is tricky as you don't take steroids on the week off so you don't get the energy kick but you feel naturally more energized. 

I work from home and it wasn't a very demanding job. I would be off the first 4 days, then worked on day 5 for 2 of my cycles, then off again days 8-9, worked days 10-11-12, then my week off I would work every day. Also doing 1 blood test per week + servicing the PICC line so doing that in my work 'breaks'. So I was fine mentally speaking but physically it was challenging. 

I was a very active person prior to treatment and during treatment I probably did about 2-3k steps max per day except for the last days of the week off where I could do 8-10k. I had Stage 4B with cancer cells in the bone marrow and got a late diagnosis, so I was already getting very fatigued before treatment. Each person/patient is different. 

Hope it goes well for you, if you have any questions feel free to message here or private. 

Hi Kodae,

41, M diagnosed with Stage 2 in July. Currently in the middle of round 3 of escBEACOPDac.

I did 2 full rounds (so 4) of ABVD and STRUGGLED. It didn't agree with me at all and the list of insane side effects I had was endless. PET2 scan didn't go quite to plan so was moved to escalated BEACOPDac - can't recommend it enough. PET3 scan now shows complete remission and although on paper the number of visits looks intimidating, I've found it SO MUCH easier to handle (maybe because all the drugs go in over a slightly longer period).

Completely agree with the others on which are the good and bad days. Day 1 isn't very pleasant because of the nausea but that tends to dissipate quite a bit by around midnight on that first day. The rest is manageable of the round is manageable.

Watch out for the blood cell injections - most people are ok with them but I got the REALLY bad bone pain. If you're like me, then the secret is anti-histamines. Get hold of some Clarityn one a day and then should be otherwise manageable with some ibruprofen.

I've been able to work pretty much full time (although from home admittedly) without having to take any extra days holiday/sick. I am really tired a lot of the time but again, it's manageable. 

BEST of luck. 

Hey I started BEACOPPDAC early December. On day 10 I started getting side effects. Feeling fatigued,  Mucositis and neutropenic. I also had to do a blood transfusion. From this week I have had a boost of energy and I feel like myself again. Trying to stay active as much as possible and eating well in preparation for next cycle. What I would say is everyone would experience different and similar side effects. So I would suggest being vigilant to your body and also listening to your body. But all the best on your cycle and I trust that God will be with you.