Hi vicky-p, welcome just catching up, had my second FEC yesterday, mine is preventative too, Grade 3, (3.5cm tumour) ER+ HER2- margins clear and no lymph node spread, chemo, radiotherapy and Tamoxifen for 5 years, like you feeling positive about the future but frustrated with life in the present, as you say life is on hold and until now I have felt perfectly healthy other than the initial post op period, I have a cracking headache this morning and feeling a bit groggy.
Nicola (keyfeatures) like you I was hoping my periods would stop. My last one was late and over the first weekend of last chemo cycle and bad, i felt awful. My Onc say on Monday that they probably would stop but being a man he wasn’t very sympathetic, a friend of mine said they can give you something to stop them as your body has enough to deal with without losing blood too.
Has anyone experienced slight stabbing pains/discomfort around operation scars after chemo, I had some around week 2 of first cycle, I mentioned this and Onc wasn’t concerned but I thought I would just see what others had experienced, I don’t have them at the moment by the way.
Have a good day ladies x
Nicola
Hi Niknak321
I wonder if they will stop after more cycles? I’ve got period pain (which I don’t normally suffer with) and I’m wondering if I’m a bit anemic because I’ve felt a little bit out of puff (but not wheezy like I get with asthma) and also tired. Popping some ibuprofen so hopefully that will help and also eating lots of spinach and prunes.
I had pains in my operated breast since chemo - tenderness and sometimes a shooting pain. My onc said this was normal and that although it looks healed there is still a lot of healing going on and the chemo can make things flare up. It’s hard not to worry though.
Hi Nicola, yes that’s what mine said too, it does make you worry though, I’m a little paranoid about any twinge anywhere!
Maybe you are anaemic, don’t leave it too long if you think you are, get yourself checked.
Nicola x
Hi Nicola, I was anaemic after first and second chemo… I was out of breath when going up stairs and tired (but I’m generally tired from chemo anyway).
They kept an eye on my count as they said they’d do a transfusion if levels got too much lower. I had cravings for spinach, curly kale and sprouts… Before I even knew I was anaemic. My count had boosted a lot by last chemo not sure if the iron rich eating helped.
Definitely mention it to medical team so they can keep an eye on it.
Sarah x
I called the hospital oncology on-call doctor. Unfortunately I got one of their useless ones. He had never heard of FEC. Asked me to spell it! “F-E-C, it’s one of the most common chemo drugs for breast cancer. Actually it’s three drugs beginning with F-E-C”. I also mentioned that I was also on granocyte injections and that they can cause anaemia. “Not normally”, he says, “it actually boosts the cells”. “Isn’t that the white blood cells”, I ask, “it says on the leaflet in the box that anaemia is a potential side effect”. “Well, you know more than I do”, was his reply. Worrying. Anyway, the upshot is he thinks I should just monitor it and call again if it gets worse. Okey-dokey.
Omg! Phone again when the shift changes!!!
Or pop to the GP for a blood test. How are you supposed to monitor how breathless you are or how tired you feel???
Not sure if you can take iron supplements whilst on chemo, my nurse friend wasn’t sure and by the time I remembered to ask my onc, my levels were almost in the normal range again. Perhaps ask that when you call again ?
Hope you get it sorted x
Thanks Luvvie66. He suggested taking my resting heart rate but didn’t say what level would be bad(?!). It really is hit and miss who you get on the 24/7 line. First time I called I got an excellent one. Hopefully this out-of-puffness will just blow over. We are only a short drive from the hospital and A&E so if I get bad I’ll get the OH to take me there. I’ve been out for a walk today and am getting up and down stairs okay. Just feel like my lungs are working more than usual - especially when I’m just lounging around. But it’s not severe. I have my pre-chemo bloods for #3 on Monday so that should pick up any problems.
Hi all and hope everyone is ok.
Keyfeatures, hope you are feeling better?-I did have a bit of a giggle/felt horrified at the same time at your (very droll) recounting of the conversation with the on call onc .
I had to call the on call chemo nurses as I noticed that my hemoglobin was recorded on my chemo book as 5-having looked this up on google it seemed that I should have been in hospital barely conscious and having multiple drug transfusions!. Thankfully the nurse had mixed up my white cell and hb counts-scary though!
Thanks sukiem, glad I made you chuckle. I’ve learned to laugh when they are useless too. I had a few bad experiences early on at my hospital and it terrified me, but now I’ve got a different attitude. Like you, I check stuff I think is important on the internet (how did people manage before it?). Also, following a botched attempt to take blood from an inexperienced nurse, a very good nurse at my hospital told me to ask for someone else if it seems someone doesn’t know what they are doing, also to get a second opinion if I’m not happy. She nearly died herself after being discharged from a hospital with an undetected pulmonary embolism, knowing something wasn’t right she had hidden her cannula marks and gone to another hospital where they found the problem and basically saved her life. So my new attitude is not to be scared, but to take charge. It’s my body and my life after all. That said, thankfully there are a lot of excellent staff at my hospital too. In particular, the nurses giving me chemo have been fantastic.
I agree the chemo nurses are great-theres a really nice relaxed atmosphere at my chemo clinic too. Contrasts with the onc clinic which is always like Piccadilly circus.
Just a quick question-does anyone else get palpitations/irregular heart beat after FEC? I’ve had it the night of each treatment but wondered if its common. I’ll mention it to my oncologist as I know FEC can affect the heart.
Hi all - Sukiem I have just started to feel a little bit tight chested and a tiniest bit breathless a bit like when you are getting a cough and cold. Not worrying too much as I have read other people have similar problems. Due my 3rd dose of Fec on Wednesday and bloods on Monday so will check it out with the nurse. Still holding on to some hair although it is very thin but at least when I wear a hat I have some hair showing which makes me feel more comfy. Think I will go with the cold cap again as for me it wasn’t too bad. Also got my period today after thinking a least one good thing had come out of having chemo but alas not. Have a good weekend everyone especially those due their next dose of chemo next week.
Lol
I’ve had a great few days - I went to the Haven today and have been given 10 hours of complementary therapies - 4 x massage, 4 x reflexology and 2 x nutritionist. After the introductory day I went to on Tuesday I have been inspired to eat more vegetables - they recommend 10 per day not 5, and only up to three fruit to keep blood sugar stable. A new greengrocers has opened round the corner - cheaper than Tescos for the basics and really reasonable for the exotics. I’m doing lots of cooking and freezing, making the most of the upswing before Chemo II next week. (Chemo II: it’s back, stronger and meaner than before - etc etc - said in an X factor voiceover kind of way).
I’m still considering fasting - would love to hear back from any of you who have tried it - after the event what are your thoughts?
My hair has started to fall out. So yesterday I took the nailscissors to it, looking in the bathroom mirror and gave myself a homemade buzz cut. I did a pretty good job, and on the bits where I cut a bit too close to the scalp, I got my partner to fill in the white bits with eyebrow pencil. It’s still falling out, but at least the bits are a lot shorter and less unpleasant to clean up after.
Comments above about inexperienced doctors are really scary. At least when I rang they had the sense to tell me to come straight to A&E. Don’t the brand new doctors start at the end of August? So you may have been speaking to someone who only left medical school 6 weeks ago. Scary thought.
Have a great weekend everyone.
Lollo-I’m also trying coldcap (due 3rd FEC on 25th Oct). My hair has really thinned on top and at the crown-now have to wear wide headbands but like you feel happier to have a least a bit poking out.
Fiona-the therapies sound fantastic,. In answer to your question I did try fasting prior to and after my last FEC. Unfortunately I found it difficult as the smell/taste changes on my 2nd FEC were much less and I actually felt like eating (and had no will power!). I think I will try again next time as I do think there may be something in it.
Sukiem wrote: Just a quick question-does anyone else get palpitations/irregular heart beat after FEC? I’ve had it the night of each treatment but wondered if its common. I’ll mention it to my oncologist as I know FEC can affect the heart.
Sukiem - Please do report these palpatations to your consultant. I’m sure I read somewhere it is a possible side effect, but it could be a serious condition that needs the medication adjusted to better suit you. It might even be due to the steroids rather than the chemo!
If you forget to mention it, do phone and ask one of the nurses or duty doctors.
(I have to write my SEs on a piece of paper as they happen now and take it with me, as my mind goes blank when I walk into the consultant’s room!) Sorry to sound like a nag, but I am worried for you experiencing this. We all tend to think it isn’t something to bother others with - that we can cope, when actually… we are quite vulnerable now and need to take extra care.
As for that terrible experience Keyfeatures had with the doc on call… I’m beginning to wonder if it was actually the night porter who answered the phone!
Suggestion: Next time - ask who you are speaking with and make a note of it… he shouldn’t be trying to answer questions he doesn’t have answers for when lives are balancing on numbers of white blood cells. new doctor or not… he should have sought out another more experienced person to assist.
Sukiem - I did a search on the Forum and found this older message thread about FEC and palpatations. I haven’t read it through all the way, but maybe it will help you to know others have experienced irregular heart beats. breastcancercare.org.uk/community/forums/thumping-heart
DO still mention it though, so they can check your blood pressure etc and maybe adjust other medications to ease it for you
Good luck,
June22
I get a very jittery feeling for the first few days, and heart feels funny from time to time. I’m putting this down to the steroids, as it generally disappears once I stop taking them. Also, I find that any form of exertion in the first two days leaves me shattered. Had to lie down after climbing the dozen steps to the loo on day one. I am on FEC3 at present, and have just stopped the fasting. I restricted my eating on Monday and Tuesday, then tried to stick to the 200 calorie limit for Wednesday, Thursday (chemo day) and Friday. I found the fast difficult, but doable. I don’t feel any worse than I did for chemo 2, but think I will know more about how successful fasting has been for me when I get to week 2, as that is when the worst SEs kick in for me. I have been told to expect each chemo to be worse than the last, but am hoping this won’t be the case for me because I still have 1 FEC and 4 tax to go. My first cycle was the worst for SEs. Second was much better. Not sure if this was due to anxiety with first cycle or the fact that I ate very little on chemo day for cycle 2 (although I wasn’t fasting). Anyway, I decided to give fasting a go because I don’t feel I have anything to lose. Will let you know how it goes.
Hi September ladies
Firstly I wanted to thank the ladies that gave me some support a while back. Apologies for not being on sooner, haven’t been too well.
Had 1st FEC 2 weeks ago now. Like you sdfmeg, I was “jittery” ( good word use as I couldn’t think of anything lol) for the first 4 days and didn’t get out of bed. Nausea kicked in yet Christies Manchester and my gp sorted it quickly with Cyclizine. Relief wasn’t the word!
Then at the end of week one the mouth ulcers kicked in! Couldn’t eat ( the fridge has got so much yoghurt in it). it was very distressing, called christie Manchester and gave me stuff of oral thrush and difflem… Started to do the trick, yet after two or three days I still couldn’t eat. Called Christies again and I have the best painkillers on the planet! If I still felt “jittery” I wouldn’t care cos I’m flying!!! Even after a week ulcers are still there, bu at least I can eat now, very slowly mind.
My concern now is my scalp. Initially when I first posted on here I was concerned about loosing my hair…after reading some posts I just want to shave it off! It’s falling out now, driving me mad and the top of my scalp is really hurting. My OH says it’s very red, and I know its very sore like my hair hurts. As I was so upset initially about loosing my hair, my OH won’t even talk about me shaving it off. He says I will regret it. He won’t look at the research I have found and the possible relief shaving it could give me. He says he is doing it for me and he has been Brilliant with everything, but on this he isn’t budging.
Anyone else had this problem re the scalp? What did u do? Can I borrow a big stick from someone to hit OH with please?
Hi Stephie-sorry you’ve had lots of problems with side effects. Regarding your scalp/hair loss are you trying cold cap? I am but my hair has thinned a lot on the top and crown. I knew I was losing hair from there as the scalp was very sore and my understanding is that this is normal when losing hair due to chemo.
With regards to your OH is he hoping that you will keep your hair or does he just disagree with you shaving it and would prefer it to fall out naturally (which it will with FEC unless you are trying cold cap and even then its not guaranteed )?
You might find it helpful to give the helpline here a ring and have a chat with one of our team about hair loss, they can put you in touch with our ‘Headstrong’ service who are here to support you. Calls are free 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2
