I only had my first chemo round on Friday but ….

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I had my first round of chemo on Friday and have so far fared pretty well. I’m am super aware though that I was given a super duper 5 day anti sickness tablet and I’m on steroids till tomorrow. And this isn’t the way it’s going to be.

My first question is, are symptoms mainly felt in the first few days if they’re coming or does it come in waves over the next few weeks until my next session (27th)? Am I luring myself into a false sense of security that I maybe ok for the next few weeks? I know that the chemo will be a builder as I have more sessions so I’m not going to be like this my whole 16 weeks. 

Secondly, this evening I start my first home administered injections for red blood cells/bone marrow. I was advised to take them in the evening so as hopefully I’ll sleep through the worst of it…. Am I again luring myself into the fact I’ll just happily sleep through it? I’ve been told that I will mainly feel achy in my ‘big bones’ such as hips, pelvis, thighs… is it going to be a smack in the face from Mike Tyson kind of pain or a dull, achy period kind of pain? 

Im really just trying to prepare myself for what’s coming… I think it helps going into the unknown having heard personal experiences from others so you know roughly what’s coming rather than just tormenting yourself with the worst…

many thanks for your time and help x

  • Hi  

    I had a peak at your profile before replying but, as you haven't filled it in yet, I don't know what sort of chemo you're on.

    I started with 3 cycles of epirubicin and cyclophosphamide (EC), which were given 3 weeks apart, and then had 12 weekly doses of paclitaxel.

    While on EC I felt generally under the weather for about 10 days after having it and then felt fine for the rest of the time. This happened each time I had it and wasn't any better or any worse each time. The only other side effects I had was a loss of taste, which wasn't as bad after the second and third cycle, and I lost my hair after about 4 weeks. I didn't have any side effects on paclitaxel and my hair started to grow back whilst I was on this. 

    I also had to inject myself to help with red blood cells but this was only while I was on EC. I had one injection every evening for 7 days. I didn't have any side effects until the 7th injection each time. I was okay in the evening but would wake up the next day with a very painful lower back. I found that if I lay on a hot water bottle the pain went but as soon as I moved it came back. Needless to say, 1 day in each 3 week cycle I spent on the sofa with a hot water bottle.

    It would be great if you could put 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.

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  • Hi, thank you for your response. 

    I have to look up the names of the drugs that I’m being given because to be honest I’ve not really remembered them. In my mind, the names don’t really mean that much to me - it’s what my oncologist said I needed and as long as my chemo nurse know that’s what’s important! There is sooooo much information to take on board that I only gave space for some much.

    But I’ve looked it up and I seem to be on a fairly similar path to you. I have four rounds of EC every 2 weeks, I then have four rounds of paclitaxel every 2 weeks, so 16 weeks in total. I then go onto 3 weeks on targeted radiotherapy as I had 19 lymph’s removed at 4 of them were cancerous. Because of the location surgery would be too complex so the targeted radiotherapy was decided upon.

    I’ve been ok so far and have felt fairly ‘normal’. My chemo nurse gave me an ice pop when she gave me one of my infusions to freeze my tastebuds a little and hopefully stop some of the absorption of the drugs. This seemed to stop any metallic taste and I seem to have kept my taste up until now.

    i have tried the cold cap and I was able to tolerate it so I’ll see how my hair fairs but again I know it’s not a given it will work, but I’m not too hung up on it.

    Im hopeful that I follow your path with my injections, I’m super anxious about it. My husband was supposed to be leaving for work tonight but I’ve made him out it off until the morning as I’m worried about being left on my own! It’s nice to know that hopefully I’ll only have them with the EC, I think I can cope with 8 weeks. Did you take any pain relief for your back? I’m worried about taking paracetamol in case I mask any underlying fevers.

    Thank you so much for your time and sharing your experiences. xxx

  • Hi again

    I just took paracetamol when my back was painful but the best pain relief was lying on a hot water bottle. 

    Before I started chemo I was advised to buy a thermometer to monitor my temperature for the first few days of each cycle so I knew I didn't have a temperature before taking paracetamol.

    Hope it goes well for you

    x

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