Hi All,
I’m not sure this is right place to ask these questions but the consultant I’m under suggested reaching out in an HL forum and I thought I’d try here.
last year I was diagnosed with stage 4 classical Hodgkin lymphoma and underwent 4 rounds of eBEACOPP. My final PET CT showed no metabolic activity in December of last year, and the majority of enlarged lymph nodes had reduced quite significantly.
I’m now 8+ months into my recovery, and this is where my questions lie for those that have undertaken eBEACOPP.
How long was it before you started feeling normal? Before the fatigue subsided, you were able to exercise properly again without getting sick? The brain fog lifted, and you were able to actually remember things again? And for any chaps on here, did your fertility recover at all? Oh, and the nausea, when did that stop? - it might be that these things will never disappear completely, I just wanted to see if anyone had some longer term experiences they could share?
thanks
TF
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.
Hayley xxx
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!
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:
Side effects...
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!
So pleased that you are in remission after your treatment. eBEACOPP is an extremely brutal treatment. My daughter is having treatment for Hodgkin’s Lymphoma & we were told it could take 12 months + for her to recover physically. She could only sustain 2 rounds of eBEACOPP chemo & went onto ABVD then to GDP which she’s currently on.
wishing you well in your recovery. I’m sure your Drs have told you to go gently but it must be frustrating.
Hi ..
I had stage 4 HL 2019 . ABVD got rid of most except a small amount in my hip so went in to have BCopp but I found the side effects not as bad but the regime very tough .. so many days at the hospital is so exhausting for me and my husband who had to take me ( pre covid ) and try to “jolly me along “.. I ended up with Sepsis so had a few weeks in hospital.. so I never finished the treatment.. then EShap .. all that did was damage my kidneys due to the Platinum in the treatment… and finally the wonder drip of BV which of course got rid of the little stubborn but in my hip .
Anyway .. it’s not 2025 and after a while to get my fitness back .. I was so weak and like everyone and effort to walk 100 metres but slowly but surely I am not fitter and stronger than before treatment .
i have just finished blood tests now and can just contact The Christie or GP if I feel something isn’t right .. we all know the symptoms after all .
i feel great , I will never forget having HL , a close friend of mine has just finished her treatment so think I was a good help for her as like all you guys unless you have been through it , Drs , Nurses , etc may have the “leaflet” but not the experience of going through treatment and the drama of loosing your hair , not being able to walk properly , fatigue .. the list is endless . I was 56 so don’t have the drama of fertility so I can’t comment on that but feel your pain if anyone that has to deal with that too x
so just wanted to say ..Hello and almost 6 years down the line .. life is great .. but I will always be thankful to everyone that helped .. whether that was all the medical staff , family and even t lady in M&S cafe who always kissed me and was the most cheerful person I have ever met .. life is great ..
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