Feeling really unwell after first dose of EC

Hi Montes. Thank you for connecting. I was similar to you with Taxol - weekly for 12 weeks, tired and achy for a few days after the dose (prob made worse by having GCSF with it too) but was able to work full time right the way through. I didn't do cold capping, so have lost almost all my hair already from the Taxol, but really glad to hear that it has gone well for you so far. 

I spoke to the oncology nurse today and she was reassuring, saying that my symptoms were at the more severe end but still quite common and it helped to understand that. She's given me a new medication to try for the nausea, then I need to contact them again tomorrow if I'm no better; I have a plan and that is good.

I think I was under-prepared, and that has made everything feel worse. If I could do it again, I would have prepped some meals that are light, small portions, easy to digest (soups, veggie or chicken stews), rather than now having to rely on my partner to try and rustle up food from scratch the way I like it when my appetite pops up ;-) Also check out with your nurse what else you could be given for side effects before you go home. Very very best of luck - I'll be thinking of you. xx

Dogmother19,

I am so sorry you are suffering so much. I was the same as you with the same symptoms. I ended up at A & E after my first one by ambulance after phoning the helpline!  The aches were so bad that I ended up with my back going into spasm round about midnight and then I couldn’t move it for the pain and spasms until about midday the next day. I was a wreck with worry to the point that they sent me for a bone scan to ensure that there was “nothing more sinister” over New Year. I wish I had been able to compare notes with you at the time as you sound so similar.  My bone scan came back ok but I was passed myself with worry as the oncologist seemed to be surprised by my body’s severe reaction to the EC. The dizziness made it difficult for me to stand up for even a few seconds and I felt so sick the whole time. Again, the oncologist said he was surprised by these side effects. You have restored my sanity! I don’t know if this is an option for you, but my EC was reduced by 10% after my first one due to my reaction to it? Apparently, I am extra sensitive to the chemo drugs and the drugs prescribed to counteract the side effects! After the reduction, I managed to complete the next two.  You have my complete sympathy.

I hope that you feel so much better soon. 

Warm hugs and positive vibes,

Bekky

xx

Hi Dogmother19

So sorry sbout how you are feeling. I have started with chemo and had first dose of EC on Friday 12th. I couldn't eat anything on that day and felt sick, was sick twice, but the day after I started feeling better. Still can't eat much but sickness is better. I do get lots of hot fludhes,though. Not sure if it is a side affect. I hope you get better soon.Eveeyone says, fist time is more difficult so when you pass this, hopefully next time will be easier. At least you have gone far in your journey. I am just at the beggining. Xx

Thanks Bekky. I’m now 11 days post first dose and still can’t eat very much (about a bowl of soup and a slice of bread per day), I’ve lost half a stone in weight and still very achy, but the nausea is much better and I’m no longer needing assistance to walk around due to dizziness and am less tired than I was  I did end up in hospital for a day, which was helpful to get my anti-nausea medication optimised and get some IV fluids. My team also feel that I have had a flare up of another unrelated condition at the same time as the chemo side effects, so that explains some of the severity.

I have never felt so unwell in my life, and it’s really made me question carrying on with chemo. I’m a healthcare professional so I never thought I’d hear myself say that. I couldn’t eat more than a few spoons of soup, walk around without assistance or function for 7 days. I am so worried about what the next dose will be like, which supposed to be in 4 days’ time  

I will see my oncologist in a few days’ time and be honest about it. Thank you for posting. I can totally empathise. x

Hi Raf44 

Thank you for replying. I do think I’ve had a particularly bad time of it, and  glad that your first round of treatment hasn’t been too bad. I had my treatment for TNBC out of order because underlying conditions I have meant it was likely I would have to stop chemo more than once, so they wanted to get the primary out first so there was a lower risk of spread if / when I had to pause chemo. 

I wish you the very best in your journey. I found surgery, while emotionally very difficult, the easiest - as long as you do the exercises and stay active afterwards you will recover without any bother I’m sure ️ Taxol was draining towards the end of the course and I developed peripheral neuropathy  but, overall, was totally doable and I was able to work full time during it. Sending you lots of positive vibes. 

x

You poor thing. That would explain why you are feeling it more. Would they be able to reduce the dose at all? They reduced mine by 10% which made it bearable and I completed the EC cycles despite thinking there was no way I could carry on? Please don’t worry. I was given the option to stop but many other options too. I am now on weekly Paclitaxel rather than Docetaxel so they may be able to offer you something? I had discussed weekly and discounted it with my husband as cold cap and thought it would be too much after all the side effects but, here I am, and have 3 weekly Pactlitaxel to go. I didn’t think I could get to the end. You are doing amazingly well. Your reduced appetite won’t help either with the dizziness etc. It’s hard when everything tastes of nothing for worse. I am fortunate that I am eating too well aNDM have put on a lot of weight which feel gutted about (biggest I have ever been and very unhappy with my body at the mo) but just trying to get by by whatever means necessary and I will face the rest later. I don’t know what painkillers you can take but I found that painkillers and anti-inflammatory meds eased it a bit? Took a bit of the edge off.  
Please let me know how you get on with your oncologist. I know we don’t know each other but please believe me, I am 100% behind you to push through to the end. Warm hugs,

Bekky

xx

Hi Bekky

I’m very much better this week. I have had to delay the next dose by at least two weeks; firstly because I was unwell and now because my neutrophils have dropped. Feels a bit never ending but at least I’m better! 

The plan is to have Emend and ondansetron as anti-emetics and see how I do with them, but I may also need to drop one of the medications altogether if I’m still as unwell after the next cycle. I really hope I don’t need to do that, but accept that I might have to. 

thank you so much for your support. It does mean a lot xx

Hi. Just for those staring out on EC. I was fine with it. I was given anti sickness pills to take until the next cycle. The team said it’s best not to feel sick because it’s harder once you do feel sick. So perhaps if you are staring out with EC you could Ask about that. I felt a little nauseous but nothing extreme. I took 3 tablets a day and then reduced them before the next cycle.

I think everybody reacts differently so just make sure if you are feeling unwell you tell your team. I had a different chemo on cycle 4 and it was horrendous. But I called the tram, got my blood checked and they then changed the dose for the next cycles and then it worked ok. You don’t need to suffer, they can do lots to help

good luck everybody. I’ve finished chemo now and I know you can all get through it as I have.

plus I was made redundant the day before my first chemo and yesterday I got a job offer. 2 days after my last chemo session. So we can all do this!!! Let us know how it goes 

Hi Robbo16 You’re absolutely right that people react differently to the EC and I do think mine was at the more severe end - I did have all the medication they give to everyone at the start, it just didn’t work in my case. 

It’s really good to hear how well you did and I’m hoping that I (and everyone else) has a smooth ride through to the other side of all this. Congratulations on your job too 

Hi, I had a bad reaction to my first EC as well, I ended up in a and e. My temperature dropped to 33 and I felt awful. My enco has said my dose was probably to big and he will reduce it but I am not sure if I will have any more. As my cancer was lobular my benefit from chemo is low and the hormone blockers have a better outcome. I hope your next treatment goes much better. Maybe ask for reduced dose. x