eBEACOPP side effects

Hi Tfo and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your journey.

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 44 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 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.

The recovery post these treatments can often be much longer than you would like and there is no one size fits all.

Many people will highlight that they never feel they are back to normal…… they just develop a new normal.

My story is rather complicated See my story as I had to go onto have 2 years significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am over 9.5 years out from my last treatment, I turn 70 this year and I doing great.

……… so for me it took a good 18 months to say I was exercising normally, my brain fog was all gone and I was living as normal a life as I can.

I am permanently on Lansoprazole due to me being so sick during my second Allo (Donor) Stem Cell Transplant that I developed a massive Hiatus Hernia…… it’s so big that it actually fully encloses around my stomach and pancreas gland but I am very thankful that I don’t have any problems with it and the Lansoprazole controls the lining of the stomach. If the HH becomes a problem then it will be a challenge what to do!!!!!!

I can’t comment on fertility…… but over the past years I have talked with many people on here and also on the various Lymphoma Action……. Support Platforms.….. both male and female who went on to have family naturally post their treatment.

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.

Always around to chat.

Hi TF

I had a slightly different experience to you, I have six months of ABVD back in 2011 but I was pretty crushed by how long it took to start feeling 'normal' again. My consultant said that I would start to feel more normal as soon as the chemo had been fully processed and, wise as he is, this was nonsense!

I had a lot to process mentally, as much as anything, and we're quick to separate mind from body in these situations but the brain is an organ and there are lots of parts to get back on track. I would say that it took me a couple of years to really feel better but I was a changed person, I wasn't the same again. I was lucky in that I was able to take a year off work but I had small children to keep me busy. 

If the nausea is still bothering you, there are medications you can take for this, my understanding is that some of them are quite expensive which is why they're not frequently prescribed but worth pursuing as your body needs nourishment now more than anything.

You will feel better, keep the faith, but give yourself a break, you've been through an awful lot. One day at a time.

Hello - just commenting so I remember to reply later / tomorrow. I had same as you, finished treatment July 2024.

Thanks Thehighlander this is very insightful and helpful! I guess it's just getting your head around the fact it's going to take some time! 

Thank you Hayley! Glad to hear you're feeling back to normal and gives us a bit of hope! 

Thanks swift_dc, could love it if you have any advice, I'm a few months behind you so any insights would be very helpful! 

Hi Tfo , replying now as I saw this when I was out yesterday. This will be a bit long now... 

This is absolutely the right place. I joined this forum some time after my treatment and it has been good to read other's experiences and to try and help others when I can. Not just around Lymphoma but other cancers, therapies, etc. we all have at least one thing in common so no matter the age, cancer type, prognosis, treatment... I find useful stuff here. It is not as active as the Facebook group Mike mentions - which I personally find a bit too much as it is much more direct that this, people just write whatever comes through their mind while here everything seems a bit more relaxed and thought through. 

I am in the young adults (I am 32, the group runs 18 to 35) support calls which run once a month and I find incredibly useful if you are ready to hear other experiences and share your own one. There are tears and there are laughs, people who have successful stories and others who are having some struggles. So that's to consider. 

So, I was diagnosed with Stage 4 HL too in Jan/Feb/March 2024 although symptoms had been going for a while. I went to freeze down my sperm early March, as soon as we knew it was Hodgkin, as we had some until the PET and the staging results were back. Since you have asked, I think I can put some stuff here around fertility (and I have the data with me as I am going to the GP this week to discuss this)... before treatment conc. 45 M/mL, motility a+b = 34%, normozoospermic. 

I went through escBEACOPP since late March to early June, with CMR so with 4 cycles was enough (thank f*** cause it was hard and not sure how 2 extra cycles would have been tolerated). Everything (treatment wise) was relatively normal. What I did different:

• Dropped from 4 injections of GSF (weeks 1 and 2 of cycle) to 2 injections after the 2nd cycle, as I was having some bone pain, but I was making loads of WBC. 
• Dropped vincristine 50% on last cycle due to neuropathy on fingertips. It wasn't awful but I had lost a lot of sensitivity and so was trying to avoid it getting worse elsewhere.

Side effects...

• mainly not eating due to nausea/lack of apetite days 1-3, then eating like crazy for the rest of the cycle thanks to the steroids, which made me so hungry. That, plus being bored and finding eating as the peak moment of the miserable day, meant that I went from 80kg before treatment to 95kg a couple of months post treatment.
• I wasn't nauseous to the point of being sick, but I was really struggling to eat anything and not feeling disgusted on the first few days. I mainly ate a few all bran flakes and lemon juice, then plenty of water. But the smell of the ward (disinfectant) really stuck with me and I was feeling a bit sick any time I visited the hospital, because of that awful smell. It stayed with me for a couple of months. Then you start going back to normal, your wee and your sweat doesn't have all the chemicals anymore so the smell triggers dissapeared. 
• Constipation first 3-4 days. 
  • After treatment I had a lot of gas and did struggle a bit with farting for about a month. While it was funny (kind of) the first few days, it was not very nice for the rest of the month. I think a bit of neuropathy and your gut bacteria being there again were behind that issue.
• Fatigue was extreme. I was sporty and all that and during treatment I couldn't do more than 1500-2000 steps a day. Rest weeks were better, but still... Only walking. Nothing more than that. 
  • My RBC and hemoglobin were low, so it was physiologically logical that I was so tired. I didn't have anything to carry oxygen around. 
  • I did my first 'run' maybe 4 months after treatment. Muscles were gone, I was heavy... it was a struggle to get back in shape. Right now I can say I am back to normal - I am swimming twice a week for 45 mins, 7 aside football once, cycling twice maybe 1 hour. I went for a 55km ride yesterday and felt fine.
  • BUT. This has been a very long journey. 2 months after treatment I would go for a walk 1hour and the next day I'd be knackered. I needed 10 hour sleeps. I couldn't stay seated without taking some breaks to lie down... Probably first 4 months after treatment were like this, I could do some activity but I needed a lot of recovery time. I think things started to improve significantly this past Feb/March so that is 8/9 months after treatment more less. 
  • I have lost a lot of muscular mass and I am still over my weight, still around 90kg. The steroids took a big toll and this is something that unfortunately I see it is a very long process. I don't diet or anything though,  and my job is remote in the computer, so that doesn't help. I am slimmer and I look more fit for last 2-3 months but until then I was heavier and swollen still.
• Hair- gone in 10 days. I was losing hair already so getting it back is not what it should be for another person. I don't have what I used to yet, and it is weaker and fluffier, but it is what it is. Still struggle to see some pictures of myself and feel 100% comfortable with it but I am getting better. No hair and over weight is something I never experienced so from a mental point of view it is something I can say I am sort of struggling with.
• No pain, no mouth sores, no adverse infections, no hospitalizations during treatment.
• Fertility
  • So I requested another semen analysis through the GP and now I have 11.3 M/mL (so that is 25% of what I had before), a+b motility 30% (a was 25 and now is 8), so I have oligoteratozoospermia, that's the word. 
  • The GP didn't follow up and the clinic either, so I am following up with them. Consultant said this was a GP thing. Once I talk to the GP I am hoping to get a better understanding of what this means, if it can get better, what can I do, or if the only option to have kids is to go use my sperm to do insemination or IVF. 
  • I want to have kids and I wanted to start now, but I don't know if I can on my own. It is sad but you have a back up option. If that doesn't work I am not sure how I will talke it. I am happy I am alive and things worked but sometimes looking at what you've lost is sad.
• Brain fog... I did struggle to concentrate and think super clearly but I wasn't as foggy as I read some pepople online describing it. I have worse memory and I misplace a lot of things, something that I didn't use to do. I've lost two hats and a jumper in ramdom places this year, I dropped my wallet at the gym and I didnt realise for 3-4 days, I left my work phone at the boarding gate a few weeks ago and almost got into the flight without realising... I feel more erratic and more forgetful, my consultant said it is normal and it is also the stress etc but idon't know. I also get mad quicker and I have much less patience. I am more moody I think.

So this is a bit of me. Physically I am fine. Psychologically I am fine now but it is a rollercoaster. I have never been depressed and in hindsight I think last year 2-3 months after finishing treatment I was  probably mildly depressed for a bit. I had some 'back to work therapy' for 10 sessions (once every two weeks, 20 mins), which helped but not enough. I should have looked for some support, but I found that between my girlfriend, this forum and the monthly support meetings I could find my way out without help. I am a bit stubborn.

There are days where I am like fff how did I have lymphoma man, this is so annoying... other days I am like it is what it is. I try to enjoy life but I am not in this mentality of being super grateful for every minute kind of thing yet. Life has changed a lot. I used to think about future plans, my pension contributions, what will we do for Christmas next year... now I honestly only see the next 4-6 weeks, I don't plan much more ahead than that. This is challenging for my girlfriend but I find it difficult to look much more ahead than that. 

I was thinking a lot about 'what if it comes back' until my last doctor's appointment. I guess I will start thinking about it again in a month once the next appointment starts coming up. But now for the last 2 months I can say that I am in a good place - getting fitter and more sporty has definitely helped with the mental part - I can't get sick if I am doing all this work, right? 

Still have my intrusive thoughts here and there, but it's getting better. 

Sorry I ended up writing too much!!! Like if I am doing a blog entry... btw I have a blog on this site if you wnat to check it another day. This site is great but you also have to give yourself some time to process all you read and all you feel. 

I check this every couple of days to see new posts and comments, it has helped me a lot during my recovery. If you have any questions please shout, message, or reply... If you think joininig the support calls would help you (it has helped me loads), check Mike's link on his comment above!