Good day
I am Nhlanhla, I am 31 and last week I was diagnosed with stage 2 HER2+ BC. I will start chemo in about 10 days and I would like to hear from people who have been through EC chemotherapy and the side effects they experienced and how you dealt with them. How many days were you down for?
Hi Nhlanhla
I’m sorry you’re facing this at such a young age. I had 3 x EC treatments. The first 5 days were fine as you have steroids to take to prevent sickness. After that it’s WHAM! I’m not the best person to talk about that as I was described as “one of the unfortunate few who don’t respond well to chemo” so I shan’t regale you with my stories. I have two friends who managed it quite comfortably and had a slump of perhaps 3-4 days (unlike my zombie stage).
Before your treatment, you’ll have a prep which includes an anti-emetic, anti-histamine and a steroid, all in one drip. If the steroid is given quickly, you may experience some stinging in your nether regions which is surreal but it goes quickly. Then the EC. The E turns your pee red - be prepared for that or it can be a shock. After a couple of pees it fades to pink and goes. You will be given a goody bag from the pharmacy with what you need to manage the main effects - stuff for controlling nausea (I never experienced it and wasn’t ever sick); stuff for your mouth; stuff for your bowels.
Constipation can be a real problem so drink plenty of fluids all the time and take what they give you (senna?) even if you think you don’t need it because your bowels do tend to come to a standstill if unattended.
Your mouth will begin to lose it’s lining and your gums may feel they’ve shrunk. You may get mouth ulcers but you will have mouthwash to help with that. If you do get ulcers, tell your oncology nurse and they’ll try various alternatives with you as you need to keep eating. Taste changes are a shock but they vary from person to person. Put it this way - my lifelong addiction to chocolate has gone for good. But simple things like bread and potato will feel and taste very different. A lot of people go for spicy foods.
Hair? Mine began to slide out so I got a buzzcut to avoid this and made sure I didn’t rub or massage my scalp. I kept my hair to the end, even if it was a bit pathetic by then. You’ll need a sleeping cap this time of year - it’s surprising how cold your head may feel. I had a load of beanies and only wore my wig maybe 5 times. But be prepared for hair loss everywhere - nose hair is a shock as you get a constant runny nose! Losing my eyelashes eventually was devastating, far worse than my head hair! I felt I was losing my identity.
Energy? We’re all different as I said. For me, I knew I was better than a zombie if I could get out of bed to go to the loo. You’re young - you’ll be fine by week three. So really it’s just week 2 to watch out for. I experienced some numbness at times, like I’d feel my face wasn’t quite mine, certainly I had someone else’s mouth, and vague loss of feeling around the nether regions.
Infections? Just use your common sense - you will be most vulnerable by week 3. BUT please get your thermometer checked to ensure it’s correct. I bought a new one. It turned out to be faulty but we didn’t learn this until I was hospitalised with neutropoenic fever and sepsis because I got readings of 37C when it must have been 39C. By the time I went in, it was 40C and I was rather ill, though I never felt it. I felt fine! You don’t need to take your temperature obsessively, just what you’re comfortable with - unless you know there’s been a change (mine was a streaming nose) - then hourly checks are wise.
Above all, it’s nowhere near as scary as we think. Anticipation is the worst. People sat and chatted happily and ate their sandwiches during chemo, which can last for hours with a lot of hanging around waiting for results, so you need patience and good company (not someone who faints at needles!). As for anxiety, I had no time or energy for that, once I’d started. I wish you all the best. I don’t know how many ECs you’re having or whether you’ll move on to weekly treatments of something else - their effects are slightly different. But, while it feels endless, just take it day by day, week by week and it soon passes.
Take good care of yourself,
Jan x
Hi Nhlanhla, I had 8 rounds of FEC and here’s my story which documents how I coped with side effects: lifeafterlola.com/
If you want to chat with others starting chemo in November there is a thread set up with friends awaiting your arrival:
forum.breastcancernow.org/t5/Chemotherapy-monthly-threads/November-2019-Chemo-Starters/td-p/1309110
best wishes. Xxx
Hi,
Just noticed your post and as I was diagnosed with stage 2 Her2+ cancer one year ago this month thought I would share my experience of chemo. I received AC every two weeks for 4 cycles followed by taxol every two weeks for 4 cycles. Steroids for three days after chemo would feel energy evaporate within a couple of hours of finishing this downtime would normally last for approximately three days longer if I had not conserved my energy when I was on steroids.There was then a gradual return to almost normal over the following week just in time for my next cycle.I used ice cubes during my infusion so did not have any issues with taste buds.I used senokat for the first 4/5 days after chemo to prevent constipation and that worked.Followed all the recommendations on mouthcare from the nurses even when I had zero energy and this worked.
The affects will be cumulative. Listen to your body and rest when you need to.
I had a complete pathological response to the chemo so it was all worth it.Hang in there.
Hi,
I jzst started the EC infusions last week.
I had so fa very few effects. Nausea the first day, but then I had energy. I went for long walks which gelped me feel normal.
since the diagnosis in October, it seems that I cant take it out of my head. I just need to feel life goes as usual.
I will have 4 cycles of EC followed by 12 of Taxol with Hercepin and Perjeta in between every 3 weeks…
I hope I can manage until now, but it is only the first…
I had an issue with the port and a little thrombosis has formed. Now extra medicine to control it.
I was recommended to use skim creams with Urea 10% for the feet and hands and 5% for the body. A lot of fluids. My skin starts to feel dry now… So I will just follow advice.
I have been making power veggie juices and drink one in the morning. I think it gives me the power I need. Find some green juice or smoothy recepies. I will maintain a healthy body.
I am wondering if any of you hace kinds at home and how are you managing this or family life in general.
hugs
Hi,
my ec was 3 weekly. I was ok for first 4/5 days then 6 days tired then picked up and had a good week before the next one was due.
i would say defiantly get some lactoluse in as constipation can make you feel very sick (if your given steroids)other than that problem I was never sick on it. I did get a few headaches as well. You may be a bit emotional especially when tired. Also if needed ask for some heart burn relief. Rest when you need to and enjoy when u can and you don’t get all the side effects xxx vic xxx