First ABVD treatment

Hi

Sorry to hear you are struggling at the moment. I too had 6 months of ABVD chemo for stage 2B bulky disease. I too found nausea and sickness tough but I did eventually find an anti-sickness medication that worked so please discuss this with your specialist nurse to see if there is something else you can try. Chemotherapy can be tough at times and everyone experiences different side effects though a common one seems to be constipation so drink plenty of water. I personally did not work during chemo but you have to do what is best for yourself. Make sure you keep your medical team/specialist nurse informed of any side effects etc as they are there to help you through.

I found I had good and bad days. I tried to find something I enjoyed doing during my good days, which did help me emotionally. Try keeping a diary of your symptoms following chemo as you may find this helpful. I also found counting down the chemo sessions helped as it is surprising how fast it goes. Try not to be too hard on yourself. 

I found this group to be a great support so please keep posting x 

Hi Amy, 

So sorry you're finding it this tough. Daughter found her first week was really rough (but that was without a decent antinausea med, which have improved greatly since 2004.... she should have asked for a change!) but her second week was much better, she went back to work, though was tired. 

Hope your specialist nurse can help, do speak out as it shouldn't be this bad. Again, as Krazy suggested, keep a diary, and take it with you next time so your nurse can see how you've been. 

Hugs xxx

Amy I feel for you so much, especially having to go through this at such a young age. I started ABVD in November and to start with it was just horrendous. I had some terrible side effects from the chemo (extreme chest pain mostly) and it took 2 cycles before I settled into a routine. My antisickness meds were changed a few times before they got it right. I wish I was like people who sail through it but I always have at least 4 days where I feel pretty rough. 

Try not to expect too much, and Def don't compare yourself to others as everyone is different! 

What I wanted to say is that i'm now almost on cycle 4 and my body seems to have adjusted. I haven't been into hospital for a long time now and it is all so much more manageable now. Still hard but not impossible. You will get through this Amy! It seems insurmountable at the beginning but it does go fast. Xx

Hello Amy,

I completely understand where you are coming from. When I started ABVD, I was acutely aware of what the treatment entailed. I felt sick with fear before my first treatment. Well done on completing your first 1/2 cycle. 

My experience may help you a little, I hope. Going through chemo taught me to live and think differently. Despite my fiancé's unconditional support, I felt that I was dealing with it by myself. No one around me could understand these news aches and pains. I learnt that the drugs would make me feel poorly at random times and recovery between cycles was not gradual. In an effort to help myself, I searched for other people's experience and trials data on-line. I was desperately trying to make sense of what was happening to me and could not picture how I was going to deal physically and mentally. 

I realised that there are many different people out there willing to share their fight against lymphoma. In real life, we would not be friends because we use the internet very differently. Some accounts are really horrendous and when I was vulnerable, they made me want to jump out of a window. 

When reading about other people's experience of ABVD, you will notice that some lucky ones 'sail' through, but in reality many, like you, struggle. When you feel chemo poorly, do you feel like taking to the keyboard to describe how bad you feel? People would rather boast about their 'achievement', in my opinion. And when they are cured, they don't spend their time writing about life because they're busy living it.

This is how it went for me: sick and nauseous the first 3 days then weak and sleepless. My consultant scrapped the standard anti-sickness and prescribed Emend. It saved me! I also loved Movicol because Ondensatron would clog things up. The second week, I got back to normal and made the most of it. Unfortunately, depression hit me hard and worsened before I sought help.

Amy, you do have a long way to go but you will learn ways to cope. For me, it turned into a cycle: shopping, meal prep, cleaning, good times, chemo, poorly, lots of rest, repeat. I could not (and would not have) return to teaching for many reasons, including the way I felt. 

I have two pieces of advice, if I may. The first, prepare to help you cope on difficult days. I bought myself some new comfy clothes and new books. I also had my hair cut short and donate my long brown locks to the Little Princess Trust. My hair fell a little and I didn't feel the need to cover up until the end of cycle 2. My eyebrows and eyelashes held their own too. Before I lost the rest, I bought a wig and learnt to tie fabric and scarves into turbans thanks to the vlogger Dina Tokio. When it was time to, my fiancé helped me shave my head. It brought huge relief to not have to pick up hair after hair everywhere I went. I also bought a chemo hat to wear at home and one to sleep in. 

The second: make sure that you are supported and never refuse help. I wanted to protect my fiancé from my pain and horrid thoughts. When I finally accepted his support, letting him nurse me and confinding my fears helped us both in equal measures. 

Keep strong, Amy. Sending you lots of love. I'll be happy to help whenever I can  

Hi Any,

Im sorry that you are finding this tough and feeling discouraged. I was diagnosed with Hodgkins Lymphona 2b when I was 29, with a 2 year old and pregnant. I had 6 months of abvd, although I did not really feel the effects until the end of the second cycle. It also took me a while to get the right medication for the nausea which once you do it is a life saver. Talk to your nurse specialist, they may be able to give you something to make you feel more comfortable and ease the pain. 

My advice to you is to cope in the best way that you can, don't compare yourself to anyone else, we are all different. You will have days when you feel that you just can't keep going, I certainly did! You are so young and you have the rest of your life to look forward to, this is just a blip, a story that you will one day talk about. Keep going, keep strong, you can do this!! Good luck, and keep us updated! X 

Hi Amy, 

I am sorry to hear you are having a rough time with it all. I was diagnosed with 2A hodgkins June last year and last Thursday completed my 6 months ABVD chemo after doing the fertility stuff too. My first two cycles were the worst for me, I found that, apart from the fatigue, the cycles got easier. Following my very first chemo, I had a horrendous jaw pain that meant I couldn't eat, sleep or drink. This pain also reached down through my neck, across my shoulders and down my back. The pain peaked over a weekend so I ended up in A&E with it. Was on co-codomol which lead to other issues. I had gone from feeling completely fine and healthy (despite what was going on inside) to feeling the worst I had ever felt in my life!! I remember thinking the exact same as you, I am never going to be able to do this for 6 months every 2 weeks. For me every chemo and cycle got a bit easier with regards to the pain I was feeling. My heamatologist thinks that the initial pain I felt was the chemo doing its thing and hitting all of the lymphoma.

I found that my body fell into a pattern and I was able to anticipate my "bad days" and go into work on my better days to keep a bit of routine. This ended up being about a week off and a week in work. That being said, it does not make you weak and there is no shame in feeling like you can't go into work or about your "normal" daily life. Everyone is different, if your body wants to rest, don't try to fight it for fear of feeling you aren't strong. You are going through some pretty heavy going treatment that you body isn't used to. It will be using more energy to repair healthy cells as well as discard and clean up all of the lymphoma cells the chemo is destroying. 

I know it feels like ages before you finish but the time does go quickly and you will be on the other side of it before you know it. 

I really hope that the treatments get easier for you and the side effects ease up. I hope my ramblings have helped. You will find a way to get through it all and it will all be over before you know it. 

If you have any questions about anything at all, you are more than welcome to ask, doesn't matter what it is

Becky xx

Hi Becky,

So happy for you to have completed your 6 months. Just completed treatment 3 (1.5 cycles) and it has definitely become easier each time, the tumor pain of it hitting the lymphoma was the biggest struggle i think and now that has lessened significantly the other effects don't feel quite so bad. 

Just wanted to congratulate you on finishing what a amazing achievement xx

Hi Amy 

I am currently sitting in hospital with a throat infection and I'm only on cycle 1B thinking how on earth am I going to get through this. 

I can't comment as well as someone who has had the whole 6 cycles but for me in my first month I can say you do get good days.

I have had very bad days of being violently sick and not getting out of bed and then the next day I wake up feeling fine! 

Don't get disheartened though in yourself. I am exactly the same thinking how on earth am I going to get through this! I can't say it will be easy but just so you know your not alone I feel the same way! 

Wish you all the best 

Becky x

Hi Becky,

Hope you feel better and the throat recovers very soon, it's miserable being in hospital! 

Hugs xxx

Hi amy! How are you doing with the hair loss? Tomorrow is my 3rd round of 12, im losing hair but is not noticeable yet, hope you're doing ok. Hugs!