Hi Gemma

Just thought I'd let you know how it went today, 1st session of EC.

To be honest it was absolutely fine. Once they got the cannula, (which I absolutely hate) in for the second time it went OK. They give me an anti sickness tablet and just one steroid (prickly one), they put a flush through as usual then the actual treatment.  I'm tired but don't feel as sleepy as I did with the other steroids & Paclitaxel. The Nurse administered the treatment it's not put up on a drip so she sat with me throughout the infusion, then afterwards another flush goes through on the drip. The cold cap has to be on for half an hour before, right through the actual treatment and an hour and half afterwards. I was there around 3 hours in total so it's an hour less than with the Paclitaxel. The Nurse did say if I've managed 12 weeks of Paclitaxel I can do this. So I guess that's reassuring.
I feel fine at the moment, no side effects yet but it's early days. 
So don't worry when your times comes, you'll be fine, it is definitely doable. If there are any changes with side effects etc  I'll let you know but so far so good. Let me know how you get on.

Take care.

x

Hi

Aw thank you! I think I was just a little more tired than usual yesterday and felt only very slightly sick but they do give you some anti sickness tablets which you have to take and some back up ones just incase! I've only taken the ones that were necessary. So it's OK. The only other thing is they give you injections to take home for you to inject into your stomach yourself (or you have have the district nurse come and do it). 1 everyday for 7 days. I start mine today, but I haven't done it yet! Might have to get my Husband to do it.

Hopefully everything will be fine for you to get your treatment in with next couple of weeks .

Take care.

x

Hi

I was just wondering how you got on with your EC treatment? Did it go OK for you? I've just had my second today. It went fine, just feeling a bit tired at the moment. 
 

Hope you're feeling OK.

x

Hi

I was just wondering how you got on with your EC treatment? Did it go OK for you? I've just had my second session today. It went fine, just feeling a bit tired at the moment. 

Hope you're doing OK?

x

Hi tootsweet 

Thanks for your message, I had my first EC last Wednesday. Had 3 days of anti sickness and steriod to take regularly so didn't feel too bad,  but then its hit my like a ton of bricks the last couple of days.

Feel like I've got some disgusting hangover, keep falling asleep on the sofa whenever I can. Not feeling sick or upset stomach but inside of mouth feels like it's coming off and just generally a bit tingly, numb and weird. Bit of flashing lights in my vision and also felt like it was raining on my face yesterday when I sat outside for a bit. Will chat to oncologist about side effects and see if perhaps they can lower the dose?

I have chemo every 2 weeks so not imagining much feeling great time in-between these cycles of treatment. But plodding on pushing through,  it needs to be done and I'll be glad when I'm at the end of the chemo section of treatment.

Hope you're feeling alright after your second dose?

Much love and hugs 

Xxx

Hi

I'm so sorry the side effects of EC have been so horrible for you, hopefully your Oncologist can tweek it so the side effects aren't as bad. It is a lot tougher than the Paclitaxel I must say.

I had my second EC on Friday. It went OK, I was just tired afterwards. Lately I have noticed my energy levels are much lower, but I do try and keep busy walking the dog and doing housework. I also have an awful taste in my mouth. My tongue feels thick, like it's got a powdery coating all over it. Nothing tastes nice. Just feel generally rubbish and so down. I hate the 2 weeks between treatments, it's just too long. I just want to get on with it and get it over with. To top it all off yesterday morning my hair started to come out. You can't really tell at the moment but it seemed to be a lot more than usual. I thought I'd manage to keep it right till the end but still having 2 treatments left I'm not so sure.
 

Hope you're doing OK, sending hugs.

x

Morning

Yes I lost alot of hair the last couple of days which was 5-7 after EC.

I can still get away with my hair in a bobble and a headband but it's very thin now and I think I'm going to shave my head and not do the cold cap on my next treatment which will be next Wednesday.

I've been having really horrible hot flushes the last couple of days but it was gorsalin injection last week too so think feelong hot and horrible is in part to the hormone blockers.

I try to put a positive mental attitude on it and keep busy too. I've got a 4 year old who's just started school and a nearly 2 year old.

No time to mope about really!

Hope you're having a good day

Ah bless you, you have got your hands full with the little ones but I bet they are a great distraction for you keeping you busy! I have a Son 17 & a Daughter 14 & my Husband of course, they've been great and also keep me busy! 
 

Not feeling great today, just very down. I don't think the hair situation is helping but I guess it's just until I can get my head around it. I think I'll continue with the cold cap and hope I keep at least some of my hair.

We've just got to plough on and get through this.

Take care.

x

Hi there 

I've been looking at all the great advice on this forum since I was diagnosed with tnbc in Aug. It was a total shock (as I can imagine it is for most people) especially after having a clear mammogram in Dec. Anxiety levels were sky high between the hospital referral and treatment starting but have subsided now. I am starting on EC chemotherapy before paclitaxel.

So I hope my advice helps others like yours has me

I more or less sailed through my first EC cycle. A little bit of fatigue (more like a jet lag feeling). The anti sickness med they gave me was spot on. I took the steroids as instructed for 3 days. I've chosen not to cold cap cos I hate the cold and, in honesty, I don't want to be in the ward any longer than necessary. But I have well prepared for my hair falling out with lots of scarves, caps, hats (thankfully its winter time) and 2 wigs. My free one from the hospital and one I paid for. I call them Fred & Ginger!

I had my hair cut really short, not shaved and it began to fall out around day 18 and has fallen out gradually ever since. Today, day 31 after my first, I have a few tufts so it will be gone by the weekend. I do believe EC will definitely cause full hair loss and cold capping is only 50% guaranteed  (that's what I have been informed). The only other I had in EC was my neuts were low at my blood test prior to my 2nd so it was delayed a week. They went back up but I now have to have shots for 5 days to start 5 days after the treatment.

My 2nd EC cycle was a bit less kind. I felt like I'd been hit by a bus Sunday eve and Monday. But it started to pass after that. I feel better today except my sleep pattern is a bit disrupted. But that will sort itself out. I also felt a little more nauseous than last time, but wasn't sick. I will mention this to my care team

The best advice I took from this great forum was drink lots and lots of fluids throughout, between 2-3 litres a day, but especially after your treatment. Eat well, avoid foods that may cause problems eg runny eggs, raw fish, anything made with unpasteurized,  take covid- like measures in terms of cleanliness, keep everything you use to cook with washed and clean, avoid poorly people. Buy a thermometer to take your temp if you ever feel a bit under the weather. All steps to avoid infection which, if I honest, is the side effect worrying me the most. But the care nurses and on call team are amazing. Most of all be kind to yourself. If u need to sleep then sleep. 

So two EC cycles down. I have my mri in a couple of weeks to see if its shrunk and that will determine when I start the weekly taxel. I must admit I am a bit terrified about the thought of weekly but I'm dealing with it by knowing it's all temporary,  it's getting rid of this horrible thing and in six months time I'll be sat on a nice beach with a cocktail 

Xxx