BEP survival tips

Hi Geekaz and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read about the side effects you're experiencing which sound very unpleasant. 

I noticed that you have also posted this question in the ask a nurse section of the online community and wondered if you'd seen that you'd had a reply from one of the nurses? If not, clicking here will take you straight to it.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Geekaz

Two days ago I also completed my 5 day BEP so it sounds like we are both on day 7 or thereabouts now. This is my third cycle and I have to do a fourth cycle but there are some similarities I see here. I would be happy to share what worked for me during my cycle 1 if it helps someone like yourself.

I had all those symptoms particularly on my first cycle that you mentioned. For a few days during the 5 day period I was also very bloated and very uncomfortable from all of the fluid they gave me through a line in my arm which was quite painful at times.

My biggest bit of advice I quickly learnt about any side effect was to tell my nurse or sister absolutely every symptom as its there job to help manage them. I regret holding back on this information during cycle 1.

For the indigestion, heartburn and hiccups they prescribed me lansoprazole which was amazing and I still take it. I believe its preventative and I take a simple tablet each day.

The hearing loss for me is a bit annoying but luckily bearable. It's mainly ringing in my hears that only last less than a minute. Loud noises are irritating. I have been told that it will probably settle and I am not given anything for that.

I get a small amount of numbness in my hands and feet at night at the start of each cycle. Again I have been told that it will probably settle and I am not given anything for that. It doesn't last long. Its still important to tell your nurse if you get any side effects though as these can last longer.

I did get some constipation for about 3 days but then it settled. However there was another chap on my ward who it lasted longer for. They gave him something (can't remember what sorry) and he told me that he wished he told the nurse earlier as it sorted it. Please tell them about this as soon as you go back or before if you have a telephone number. They won't mind at all.

If you are on day 7 now you are probably feeling quite wrecked. However this should get a better as you move through your cycle. I would recommend just eating and drinking what you want when you want if you can. Keeping up with anti sickness tablets helps me. I am allowed up to 3 metoclopramide per day and 

After day 7 on my first cycle I recall getting a few more side effects that I might give you a heads up about. Everyone is different though.

The first was mouth ulcers and sore gums. I didn't get this on my second cycle though. I got myself a soft bristle toothbrush, used an antiseptic corsodyl mouthwash, ate lots of sweets and sour ice pops. This one might not be an issue for you though.

This one I am afraid will probably happen - I also noticed a few hairs coming out about day 13. I bit the bullet and shaved it off with a grade 0 before it went everywhere. I am glad I did that before it started to fall out in clumps. However if I had my time again I would have also gone over it straight away with a razor and shaving foam as the little hairs still kept falling out and would end up all over towels and pillows. I sat in a nice warm bath with a mirror just before my second cycle to do that. It's probably a control thing but I'd liked the idea that I shaved it and it didn't all fall out. The funny thing was that bits started to grow back around the sides so I shaved it again!

I have bleomycin on day 8 and day 15. Day 8 I still feel rough when I go in however when day 15 comes around things seem to be feeling a bit better.

Overall you may find that the first cycle is whirlwind as you don't know what to expect and you and your nurses might not be on top of your side effects as best as you can yet. However as you move though your treatment you will get to know how you feel and when.

Hi Komodo 

Thank you so much for taking the time to write this. You are one cycle ahead of me and this gives me inspiration. Day 5 and day 8 really took it out of me and now I have confidence to go into day 15.

It took two calls to the emergency line before the hiccups settled on day 5. The Bep regime seems to be uncommon for nurses to keep on top off, but I will persist and flag issues as they arise. I am extremely lethargic and hope to return to normal by the weekend.

I pray for you and wish you the speediest of recovery. Please keep in touch.

How are you getting on Geekaz? Sometimes people find their symptoms at the tail end of their cycle before they start a new one a little more bearable. What was your experience?

Are you now starting cycle 2? I recall not looking forward to starting it all again. You may have started to loose your hair which isn’t always easy either.

I forgot to ask last time. If you do not mind me asking that is. Are you receiving the first five days of each cycle as an inpatient or do your go home each evening with your fluids? I ask as people’s experiences can vary widely due to the pros and cons of each version of the regime.

I start cycle 4 on Wednesday. On day 15 of cycle 3 my temperature was raised along with a low neutrophil blood count. Although I felt reasonably OK this meant they had to act quick and I had to stay in hospital for IV antibiotics. I was released the following day and I’ve been given oral antibiotics. Despite feeling not too bad they took it very seriously. The learning we are taking from it is that we are simply going to be extra cautious now until I finish my treatment. Tricky with two kids though. From what I’ve learnt it’s really not worth getting an infection.

Dear Komodo

Bro - we are going through identical experiences, it’s uncanny! As you asked, I am receiving chemo as an outpatient- ie. I go home each evening and come back the next morning. On Day 15, I went for my appointment but it didn’t go ahead as I’d spiked a temperature. I was then admitted for 5 days and was diagnosed with neutropenic sepsis. This was a dreadful experience as it is manic in the ward. I was discharged yesterday and was thinking about writing to you. Despite my low neutrophil count, my consultant says I need to begin cycle 2 on Monday.

Everything you described is 100% accurate. 95% of my hair has fallen out. I understand your point about all the fine hairs. I too did a number 1 all over as I didn’t feel confident about using a razor over my scalp. Interestingly I still have most of my eyebrows.

One of my biggest challenges is my sore mouth. They have given 3 mouthwashes and they seem to be helping. Does the sore mouth (mucositis) improve during the next cycles? Or do you just manage the pain with the mouth cleaning regime?

Wishing you the very best for cycle 4. Thanks

The fact that you are receiving your fluids as an outpatient must have some advantages. I'm on this regime too. Each night I go home with fluid in a suitcase which is attached via a midline. This is a new procedure. Even a couple of years ago this would not be an option for patients and I am not sure that all cancer centres do this. Towards the end of the 5 days on cycle 3 I actually wish just in hospital as I had issues with fluid retention in my arm at the midline site so ended up going back and forth with issues anyway. I have my fingers crossed my midline with behave for my 4th and final cycle so I am not admitted for the 5 days of fluid.

I am so sorry you had to stay in hospital for those 5 days. Its a real shame as day 16 onwards after bleomycin day 15 is when most people feel a bit better despite low neutrophil counts. For example, I now probably have a low neutrophil count on day 18 but I feel OK. Your experience sounds awful. I only stayed one night for 'suspected' neutropenic sepsis due to a slight temperature and a low neutrophil count on day 15. One night was more than enough. I was so glad to have a private room. Did you receive 5 days of IV antibiotics on a ward with lots of other people? Either way it sounded rubbish. You would also be straight out of hospital and more or less straight into your next cycle which is a real sucker for you. What day are you on now?

I mentioned in an earlier post that I also had mouth ulcers and sore gums. I got myself a soft bristle toothbrush and fancy mouthwashes. I didn't really get this on my second or third cycle though. Possibly only mild but nothing I was overly bothered about. I hope your mouth on futures cycles is as fortunate as mine was on my second and third cycle.

I too still have most of my eyebrows but they have definitely thinned. With me now on day 18 of cycle 3 I don't think I will loose much more hair this cycle but a 4th cycle might change this. There is another other guy I occasionally come into contact with who is also receiving BEP. He has done 2 cycles and I think his eyebrows may have gone alreday so I suppose my experience might not be much to go off. Although I am not sure as he is just a young lad, maybe 19 or 20, who wears a cap and sits with his dad so I don't feel like he is wanting to chat much which is fine.

To be honest I think its OK for me to say that think I would find it more beneficial if there was more younger people in my chemo room. Or better still, other blokes racing BEP. I am 41 and I am by far one of the youngest and seem to be on a different regime to other people.

I don’t know what a midline is. I have all of my IVF through a canular, which they insert every morning and remove before I leave. Having to take your fluids at home seems very harsh.

I received antibiotics and all sorts of fluids in wards full of 4-6 men. Every time I went to the toilet, my machine started beeping and it could take up to an hour for the nurse to restart the machine. They moved me 4 times and in that time I was next to people who kept farting, would play loud gospel preaching and the cherry on top… I was moved opposite someone who was a confirmed Covid case. Being neutropenic- this does not inspire confidence.

I missed my day 15 bleomycin due to fever. I will now begin day 1 of cycle 2 on Monday. It is promising to hear the mouth sores weren’t too bad on your subsequent cycles.

I am 37 and I have rarely seen anyone younger in the chemo suite. Majority of people are over 50 and they only come in for a couple of hours. You are the only person I know that is receiving BEP.

Its interesting that they give you all the fluid through a canular whilst on the ward and you can then go home not attached to anything. I do like the sound of that! They must have to give you tonnes of fluid with your treatment through the day when you are there.

I have a midline which I suppose is a bit like a permanent canular in my arm which stays in my entire 12 weeks worth of treatment. On day 1 to 5 of each cycle I am still attached to my fluid when I go home. Instead of receiving it from a stand it is contained in a small suitcase that I have to pull about like someone about to board a plane with hand luggage. If it beeps through the night the on-call nurse gets an automatic text message. I have had no issues with it doing this though.

That ward experience you describe sounds crap but unfortunatley it doesn't surprise me at all. I bet the rich and famous or the royal family wouldn't have to put up with that. When you are having chemo or generally unwell on a ward other patients are probably the worst part. Don't get me started on their visitors the tag along that are even more annoying when you are feeling rubbish. The 5 days are long enough where I count how long I have left of each chemo by staring at the machine. I cannot imagine knowing I am not going to go home each evening.

On my ward there is now three of us receiving BEP but unfortunately not really on the same days. When I started it was just me. There is the young lad I mentioned previously who is on 3 day BEP who I now see on a Wednesday. His long days days are Mon, Tue, Wed whilst mine are Wed, Thu, Fri, Sat, Sun. However his 'long day wed' is different to mine.

There is another guy in his 30s started now on 5 day BEP like us. His days are Mon to Fri however so our crossover is a Wednesday again. His 5 days are not when my 5 days are so I recon I will only see him on a Wed too. However his 'long day wed' is different to mine. I met him once and he was really chatty and appeared to be doing much better than me, which was nice! He was on day 3 cycle 1 but I was feeling rubbish that day and he was sitting a few people away from me so we didn't really talk much. I felt like he was keen to talk to me with me being further down my treatment but I just couldn't be bothered as I felt ill and there was two quite nosey older folk sitting between us with a load of visitors which prevented that. I should make much more of an effort this Wednesday.

Not that you would wish what we are going through on anyone else I imagine that if another BEP patient suddenly popped onto your ward it would likely be more helpful for you.

The nurses on my ward are fantastic although I get the impression that some are more familiar with the regime than others.

I wish you all the best for Monday and cycle 2.

Hi Komodo

I wanted to check-in and was wondering how you are getting on?

I just completed day 15 of cycle 2 today. I am mentally and physically prepared for my last cycle next week.

These are the main side effects of cycle 2: flatulance, constipation, UTI and sore mouth (again, but not as bad as cycle 1).

Hi Both, 

I just wanted to say thank you for posting your symptoms... I'm a female having BEP which is really rare it seems! I've struggled to find any girls having it. I'm 34 and today had day 1 of my first cycle.

I already feel rough! Nausea, tingling hands, woozy head and aching legs... I was hoping symptoms wouldn't hit until day 3/4... but here we are.

Best of luck to you both in your treatment. My ovaries have already been removed along with the tumour and this is now precautionary, I have 3 cycles on the same regime as you guys.

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