Any not so awful experiences of EC out there?

Hi CC1979 

I found it ok. I had it every 3 weeks and the great thing about it was I got at least a week of feeling more or less normal in each cycle. It gave me some diarrhoea and made me achey / headachy. The Filgrastim injections made my bones hurt. Lost taste for a few days each cycle and of course lost my hair. I had it first then switched to weekly Paclitaxel. I found the relentlessness of being on a weekly cycle harder. 

Thanks so much for the reply Coddfish.

A week of feeling more normal sounds a little better than only getting 2 days on the weekly one. But I guess that means I can expect to feel not great for 2 out of the 3 weeks?

I'm on my 4th go of Filgrastim already, it goes straight for my right hip for some reason (maybe something to get checked out when chemo is over) and gives me tummy cramps. The hair went between weeks 2-3 so not worried about that any more, and I can no longer taste certain things (bacon and garlic, 2 of my faves!).

I've been on the merry go round of constipation/diarrhoea since pretty much the start of PC, so I have a drawer full of laxatives, loperamide, buscopan and many more things to hand that I can call upon!

Thank you for sharing your experience. I know it's difficult to know how each person will react, but so far I'd heard and read some truly concerning side effects that had me quite worried.

I had 4 rounds of EC 3 weeks apart. For about 3 days each time I felt truly poisoned, shaky and nauseous in spite of the supportive meds. Walking about helped with the nausea, the shaking and my digestion. 
The Filgrastim jabs made me ache, but only the first 2 days each time. Again I think walking helped with those and also made me tired enough to be able to rest.

What was good was day 6 - by the hour I felt myself becoming more and more normal. Then I had 2 weeks of feeling fine. Overall each EC gave me a relatively short nasty spell .

I had 12 paclitaxel infusions after that. For me they were much more tolerable as they didn’t make me nauseous.
I had been a very motion sick child and then in pregnancy was very nauseous, and that made me predisposed to feeling  quite sick with the EC chemo.

All the best with your ECs xx

Hello,

I'm a year beyond it, so only the most stark aspects come to mind.

Days 1 - 3 just ride the wave - awful but you'll get through it, because what choice do we have? Definitely hold out for week three because it really does feel normal. I did two lots on a three weekly cycle, then went to fortnightly (foregoing that lovely well week) so I could finish in time to do the Race for Life on my diagnosis anniversary. Honestly, days 1-3 of each cycle, the idea of running felt impossible, but as with all of this, it passes, and I loved crossing that finish line. Just be meticulous with the anti nausea meds - take them regardless; don't wait for it to kick in. 

My main experience was food being gross and craving childhood comfort foods - mashed potato and spaghetti hoops - basically, beige was in! I also had skin crawling impending doom feelings, and watched the London Marathon in bed, writhing, and wishing my body wasn't so depleted. But then I ran the London Marathon this year. I found looking ahead helpful when the reality in the moment was hard.

When you're in it, you're in it. But then you're out of it. And it will pass. EC is grim, but you will be fine. No chemical is more potent than human capacity for hope.

Did anyone tell you it's red? And put in via syringes not a drip? And your wee is red to begin with. Just letting you know as those things threw me!

You've got this. Xxx

Hi CC1979 

I'm also moving to EC for 3 x 3 weekly treatments this coming Friday after completing 12 weekly rounds of various other drugs last week. I previously had a single dose of EC back in April as I originally started on a different treatment plan and found that I felt very bad with fatigue for 3 days and had a moderate settling to mild level of nausea for 5 days, then on day 6 I felt almost normal and was fine for the rest of the cycle, similar to what Cynoptimistic has described. I'll definitely take it if happens like this again as I've found the same as Coddfish with the weekly. 

Hope it goes easy on you and all the best! x

Thank you for sharing Cynoptimistic (love the username!). I had heard that there's much more likelihood of nausea with EC which I haven't experienced so far.

I've been able to continue working from home throughout PC, albeit on reduced hours from about week 5 because of the fatigue, but it sounds like I probably need to be realistic about taking some time off. I have chemo on a Thursday and I'm off work until Monday then so I'll see how I get on with the first few days I suppose. Improving by day 6 sounds a little better than what I was imagining.

It sounds like you're finished with chemo now, where are you in your journey? I hope all is as well as possible xx

Thank you, also wishing you the best with your upcoming cycle, in a way you got a sneak preview (though I'm sure you wish you could be doing without all this at all). Hope that your ECs go as easy on you as possible xx

Thanks MIBM for sharing, gosh I don't think I'll be foregoing a normal week for anything other than George Clooney wanting to visit me haha! Well done you on the determination to do the Race for Life, and later the marathon. Such an achievement.

I'll bear in mind keeping on top of the meds, I haven't had to worry about the anti sickness ones before so that'll be more reminders to add to my crazy phone calendar (chemo brain has well and truly hit). And I'll make sure to have some plain foods in too, if I can stomach eating.

I knew about the drip/red wee as a chemo buddy has been through EC recently, it hit her very hard but she has other health issues so I didn't want to assume I'd react the same.

Thanks for the support, I just want to get to the end of this now, hopefully relatively well, and plan for surgery xx

 MIBM has recommended taking the anti sickness meds even if you don’t feel sick. I think that’s common advice that is often given to you by the nurses. Nevertheless I would be wary of doing this and wait to see whether you actually need to take them. It is probably harder to row back if you already feel sick, but the meds can lead to quite bad constipation. It’s not automatic that you will get nausea. I had absolutely none despite being someone who easily becomes travel sick. I did however react badly to anti sickness meds. I never took any of the drugs they sent me home with but for some reason they gave me far more anti sickness meds alongside my first Paclitaxel infusion than they had been giving me with EC. A few days later I was in hospital, utterly blocked up with infected diverticulitis, needing several days of IV antibiotics. I refused all anti sickness meds from there on in. It’s worth saying I have similar issues if given painkillers such as codeine. 

Thanks for the tip Coddfish, which anti sickness meds did they give you? Ondansetron (which they give me on treatment day) does give me constipation but the laxatives seem to work OK for this after a couple of days. I haven't needed to take any metoclopramide yet so not sure how those will affect me but one of the listed side effects is diarrhoea rather than constipation. I too would be prone to it with co-codamol. I did speak to a lady who ended up in hospital with a compacted bowel so that worries me!