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When do things start to happen??

6 REPLIES 6
Member

Re: When do things start to happen??

Hi Aqua, 

Hope you’re doing ok. 
I felt sumitro how you mentioned, a bit of a fraud! I expected to feel awful and to experience far more of the side effects they warned me about. 
I actually found EC the hardest mind you. I started with 4 cycles of paclotaxil and carboplatin, which at the start was surprisingly easy. I even managed a run on the days before treatment and only ever felt rough for 2-3 days. 
EC wiped me out for about 5 days though and nausea wasn’t nice although they change my meds for that which sorted it out for the next cycle. Each cycle was worse for tiredness unfortunately but only had 3 and have just finished.

Having finished now, looking back, I found the whole experience surprisingly tolerable although I’ve been fortunate not to be working (or unfortunate depending on your point of view). 

So I’d say enjoy all those good days (of which there will hopefully be plenty), and as you get more used to noticing how your body copes and responds, and how you feel, use some time in the run up to the next treatment getting in all the treats and nice food and drink. 

wishing you well emma

Community Champion
Community Champion

Re: When do things start to happen??

Aqua ❤️You’ve done exactly the right thing letting your team know immediately, if your temp goes up or you start feeling worse, rapid response it immediately to your team 👍always best to check anything with them ❤️💕💕Shi xx

Member

Re: When do things start to happen??

Obviously jinxed myself. Have been feeling weird all day!!

throat feels swollen, and just feeling very head fuzzy and blocked up. All very strange!

have updated my team so hopefully will feel better soon 

Member

Re: When do things start to happen??

Thank you both for this. It’s definitely helped. 
Im not daft enough to think it’s going to be plain sailing but am almost feeling like a fraud with how I’ve been so far. 
Still very early on but I just need to be vigilant and be aware of every change. 
my oncologist and breast care nurse are great and have direct links to both of them so am reassured. 
thank you both for your advice 

xx

(at 2am- guess the steroids haven’t quite worn off x)

Member

Re: When do things start to happen??

Hi aqua

Maybe you’ll be one of the more fortunate ones. Everyone is affected by chemo differently, Some are laid low (I was a like a zombie), others carry on as close to normal as treatment allows - and there’s a lot of room in between. You’ve obviously experienced the red pee already!

My advice would be to keep on as you are. If you anticipate side effects, you may notice them rather than let them slip by - a bit of nausea, occasional tiredness. Chemo gets a very bad press and we all expect to be vomiting within minutes but oncologists and pharmacists have things very much in hand nowadays and our dosage is carefully calibrated and preceded by several preventative drugs like a steroid, antihistamine and anti-emetic. 

You will probably lose some, if not all your hair. It doesn’t fall out overnight - just one day you find you’ve lost a lot in the shower. In my case, I scratched my head and a clump gently slid out, at which point I arranged for a no 6 buzzcut which I retained in a sparser form till the end of treatment. After a couple of treatments, you may notice losing nasal hair (constant nose-drip if you’re unlucky), pubic hair (you may pee in multiple directions) and eventually the finer hair of your eyebrows and your eyelashes. This is unavoidable and your breastcare nurse will probably arrange for a wig fitting (hilarious - try everything!) as well as their being scarves and caps you can wear. Personally, I stuck with cashmere beanies though I had to double up by February).

I think you are likely to experience changes in taste and in the texture of food. You may be able to continue with your usual diet but many women report preferring spicy foods that they can taste. Be wary of constipation, which is hard to shift once it becomes the norm. Use the laxatives the pharmacy gives you as a preventative rather than as a solution. Look out too for changes in your mouth. You may notice saliva changes and get mouth ulcers. Report these as there are medications to help prevent them (unlike the normal ulcer that lasts 10 days to heal, these will seem almost permanent if you don’t take immediate action). 

The rest is up to the individual and I think forewarned is not necessarily fore-armed as you personally have no control over what happens. However, as Shi says, report any increase in your temperature as instructed. Make sure your thermometer is working properly and don’t share one if possible. You are going to become extremely vulnerable to the slightest infection as your blood cell counts are weakened. Avoid any source of infection as far as you can. Treat it sensibly if it happens and monitor that temperature. If it nears the magic number, contact the emergency number even if you feel fine. I’m speaking from experience - my new thermometer was reading two degrees lower (but we didnt know) and all I had was a runny nose. By the time I contacted them, it was too late for a quick treatment and I spent 4 days on drips, in isolation, blood transfusions, the works - with just a runny nose (and sepsis!). Take no risks. They warn you in no uncertain terms for a reason. If you escape lightly, be happy.

I do hope you carry on with your walks - exercise is essential - and you sail through chemo and come out the other side wondering what all the fuss was about. But don’t be down-hearted if you succumb to fatigue. It’s all normal. Anything that worries you, ring your adjuvant oncology nurse or breastcare nurse. That’s what they’re here for. I wish you all the best, Jan xx

Community Champion
Community Champion

Re: When do things start to happen??

Aqua ❤️ Everyone is different during chemo but a few things to look out for burning wee like cystitis but no temperature, it’ll need antibiotics, thrush mouth or thrush down below again it’ll need antibiotics, things can happen at any time in cycle always be vigilant and ring your unit to check everything 👍they are there to get you through safely ❤️ Great you’ve been getting out for walks ❤️ 💕💕Shi xx

Member

When do things start to happen??

Hey everyone

Am at very start of my journey. Had my first EC treatment on Tuesday, and have got 8 cycles in total to go theough

 when would you expect things to start changing? I had bit of nausea and tiredness over last few days but have been getting out for walks and generally feeling much better than I had expected to.

Just taking each day as it comes but just be good to know when to look out for things

thanks xx