I thought it might be helpful to share my recent experience of going through chemotherapy (3 x FEC; 3 x T) with anyone about to start their course of chemo.
To put you in the more general picture first: I was diagnosed with breast cancer at the end of September 2010 (32mm, grade 2, invasive ductal carcinoma which had spread into the lymph glands). I opted for a lumpectomy and the lymph nodes were removed too (also in October).
I started chemo in November 2010 and finished at the end of February 2011. As I am sure is the case with everyone else, I was very apprehensive when I went for my first chemo. I have always tried to eat sensibly and have never ‘abused’ my body or taken anything unnecessarily, so I found the thought of toxic drugs being put into me very difficult to cope with. However, the chemo nurse put me at my ease and explained exactly what she was doing, which helped a lot. All the nurses who have looked after me during chemo have been really kind and understanding and they answer any questions you may have.
I was very sick after the first chemo but realised afterwards that I had not handled the anti-sickness drugs I had been given very well – I should have taken them sooner. The second and third chemo sessions were OK – no sickness, but I was wobbly for about a week following and just had to take it easy, sleep as much as possible, eat little and often, take fresh air and go for gentle walks. I think it is really important to ‘listen to your body’ and take very good care of yourself.
After Christmas I was worried again as I had to start on the new drug (docetaxel) – Taxotere. In many ways the actual session in the chemotherapy suite was easier as docetaxel is given by a straightforward drip. Following the three lots of docetaxel I have had achy joints, particularly in the knees and ankles, for about four days, but it has been manageable with taking paracetemol and ibuprofen. There has been no feeling sick and after a week I have picked up again and felt much better.
I wanted to share my experience with anyone about to start chemo as it is so easy to read about and focus on all the nasty side-effects, thinking that it is going to be really awful. I think it is important to know about the worst that can happen so that you are prepared, but there are many women like me who have come through chemo without too much difficulty. It is not easy, but it is ‘do-able’. There have been times when I have been thoroughly miserable about the situation in which I have found myself, but it is important to try to remain positive and to realise that the chemotherapy will ultimately help you be rid of your cancer.
To those of you about to start chemo, here are a few things which have helped me cope:
• as you have the chemo, think about it as something that will rid you of any cancer cells lurking about in your body, not as something nasty
• take each day as it comes – if you feel awful, it will pass, it is a temporary state
• really enjoy your good days
• accept help from those closest to you – family, friends, colleagues – and look for support from this forum or support groups in your area if you need it
• talk about how you feel, don’t bottle it up
• try to do something each day to boost your morale – I have found getting out walking really therapeutic
• if you are off work, do some things for which you normally don’t have time – I have visited places, kept in touch with people more, read books and done things like go to the cinema
• pay attention to how you feel and really look after yourself – eat healthily, drink lots of water, pamper your body!
• it is a bit of a cliché, but remember there are always people who are worse off than you
• remember too that anyone who is going through or who has gone through treatment for breast cancer is by your side in spirit.
I hope that recounting my experience of chemo helps you and I hope that your chemotherapy treatment goes all right too.
Thank you perko for this post iam going to start chemo soon ( not sure yet waiting for a date but go on monday 7th to see chemo nurse so she can tell me all about chemo) but i find your post really helpful thanks again maxine xxx
Hi perko
What a lovely, positive, well written post. Just reading this has lifted my spirits!
Im half way through chemo, and am also finding it do-able - though not easy. I think any newbie’s also need to remember that a lot of us only post when things aren’t tiptop. We need to get things off our chests and gain support from others.
Maria x
Thank you perko, your post is a great comfort to me as I start fec in two days’ time 8 March and was anticipating it rather like a prison sentence, but feel encouraged that you managed to do all those things. best wishes and thanks again.
Just to endorse what others have said i.e that your post is really positive. I had read loads before my first FEC on Thurs and was so scared that I burst into tears - the nurse was lovely and said it was not surprising but I think I had built it up to be so awful. I was sick once after my first chemo on Thurs eve, before even the 2nd ondansatron anti-sickness pill could take effect, but it was only once and I haven’t had other side effects yet! To hear the the next cycles are not necessarily worse is reassuring, as I had thought they would get progressively worse (different is I think what others have said)
One piece of advice I do have is that when I saw the oncologist 2 weeks ago he mentioned the posibility of a PICC line. I definitely wanted one because they have struggled to find veins and before even starting chemo. However when I went for the first session they told me I that if I’d wanted one before the 1st session I should have already had it fitted. It’s now been arranged for before the 2nd cycle but others may wish to note that if they have decided to have one (and apparently it’s only really necessary if, like me, you really struggle to offer up a vein - it will only get worse trying to find one they can use if you start with hardly anything accessible) please make sure you ask for it to be fitted before the 1st cycle.
Good luck to others just starting and definitely read the tips others suggest - I agree that we probably post the bad news more than the good.
Hi Perko,
Thank you very much for posting that very supportive post.
I have just had my 1st FEC and I am having 3x FEC 3x TAX.
I have and still am scared about it all and reading your post was very comforting.
Thank you
Hope you are doing well?
Take care
Donna x
Hi Perko, what a brilliant article to be reading at this time of morning when I cannot sleep!!! Always been a fairly positive person but it has started to escape me, but you have helped me get that back today! Thank you and good luck… Adi x
Perko and others - yes Chemo is do-able. I’ve had 6 FEC and am now in middle of 6 TAX - I call it “manageable” - it does seem that everyone has different reactions and different side-effects - my experience is that if you get a side-effect talk to the medics straight away about this as it is probably controllable. I had excellent drugs for nausea so only suffered for a few hours until I got it sorted by returning to the hospital, thrush came on to TAX and I’ve tablets to sort it, steroids can bring on sleeplessness so there are tablet or just find it’s a good time to read a book at night. I’ve found the forums here really helpful about side-effects so hope you do too.
Thinking of you - and do keep positive - like Perko I think of it as helping me and once it started (within 5mins of first dose) the nurse could tell I relaxed and accepted the drug whereas I was very nervous intially.
Do drink lots of water before your first dose to be well hydrated (I didn’t initially as I was worried about needing to go to the loo -you can…) and keep your hands warm to help them find your veins (lots of us wear gloves in the waiting room) - I find both of these really help get things started smoothly. And afterwards don’t expect too much of yourself - adopt an attitude of kindness to yourself; I’ve had to learn to delegate and prioritise…
Best wishes
Fran
Thank you everyone for your comments. I had my first A+C chemo 2 days ago and feel really yukky today. Your words have brought much comfort & hope to me. A ?, how soon can I expect hair loss to begin? My onc said that when I came back in 21 days for round 2 I would be wearing a head scarf or wig. Jayne
Hi Panamaexpert,
Sorry to hear you’re feeling yukky. It’s not nice is it? I have only had 2 chemo’s but my secind is much better than the first (so far, anyway). I’m just feeling very tired.
My hair started to fall out about 16 days afetr my firsy chemo, just a bit of thinning to start with, then I got starnge feeling on mhy head, like a tingling and waht I can only describe as a pony tail headache. After that it started to fall out quite heavily. i found this really upsetting and chose to shave my hair off.
I went to ‘Headstrong’ which is a service provided by BCC> They are so good and shown you all the different types of headwear so you get to see what suits you before. There’s some really good and reasonably priced websites- PM me if you want details of there’s another thread going about appearance and tips to look good.
All the best,
Lisa
has anyone else experienced feeling ok,ish one minute and s*** next i am on my 4th of 6 tax, i felt ok yesterday day9 following last chemo i have got up this morning and i can only just walk again my legs honestly feel like lead weights have been attached to them so do my arms, is this ok has anyone else experienced this, any comments would be gratefully received xxliz
Just want to say thanks for this helpful, encouraging thread. I had a mx and node clearance 2 weeks ago tomorrow. The scar needed no dressing after 4 days, was home in three, great movement in the arm, and somehow as no-one had mentioned chemo I thought I’d escape it. However, return appointment told me that I needed both. Reeled at first, but now prepared to get on with it. I’m still slightly swollen in the arm and chest-where-the-arm-rests-on-it… and waiting an appointment with the oncologist. SO encouraging to hear that it’s do-able… and also to hear of how each day can be so different - will need to explain that to my other half! He’s been brilliant, but he thinks in lines and boxes… bless you all, and thanks…
Had my first FEC cocktail on the 22nd. I know everyone is different, but I have also found it totally ‘do-able’. Had no real side effects for the first 3 days - kind of felt like a fraud for taking time off work. Fighting insomnia due to the steroids and a seriously dodgy tummy for the past 2 days. Do the SEs get better or worse over time? Tired and have peeling fingers, but really, its not so bad. I wonder if it gets worse down the line. I have 2 more cycles with FEC and then 3 with T.
Hello All
I have been reading the posts on this site for a while and have finally plucked up the courage to relay my experience, firstly in the hope that it will help people like me who considered their diagnosis of BC as death scentance and to gain feed back from other ‘postiees’.
I first discovered a lump in Aug 2010. My GP referred me and was seen within 2 weeks. the breast surgeon could not find the lump so I had US with biopsy and a mamm. the result of the biopsy was negative but as there was a conflict between the my location of the lump and the biopsy location I was given a follow up appointment which was Dec 2010, week before Christmas. The surgeon examined me again for what seemed like an age, he then put a ‘x’ on my right breast and sent me for another US and this time the biopsy taken was positive. I have invasive lobular cancer, er pos and her2 neg. I am having chemo to reduce the the size of the lump before surgery. Tomorrow with be my 3rd tax which is followed bt 3x FEC.
The SE have been nothing like what I expected and reading the posts on here there as many SE as people!
Mine have been, red rash from the top of my head to my chest, a bit like chicken pox! That has been sorted with anti histamines before taking the steroids before treatment.
Really sore mouth and oral thrush, this is being treated with extra fluconazole, gargling with disperable aspirn
Hello All
Sorry I pressed the submit button in error!
I have aches and pains for a couple of days after and am not able to concentrate because of a very fuzzy head! my son tells me the head part is normal for me!
All these SE are manageable and do-able. I was given lots of telephone numbers from breast care nurses to oncology nurses who are at the end of the phone, use them don’t be scared or afraid of asking for help, that’s what they are there for!
For me the not knowing over Christmas and New Year was definitely the worst part, once I was given the diagnosis I Just wanted to get on with it. Now I’m on my 3rd cycle and counting down, trying to stay positive not only for me but my family and friends who are supporting me.
I’ve learnt that BC is not the death sentence I feared and I can get through this.
Thank you fellow ‘postees’ and keep posting as I’m sure there are many more like me who read them but have never posted (until now), and gain inspiration and hope from them.
Lov Mel xx
hi mel, i am on 4 of 6 regime docetaxol, i have struggled, the se,s have been a lot harder than what i ever imagined they would be, i dont like feeling vunerable and that is how this drug has left me feeling, on my very bad days i have stayed in bed, on my average days i have felt gah-gah, on my good days i have and intend to take full advantage of them and do something other than watch t.v. nobody ever told me it would be like this, another experience to add to my box of experiences over the years lol it all makes us a better person dont you think, all the best love liz xxx
Hi all
Even though I had a dreadful time immediately after FEC1, I’ve been assured by my onc that they’ll give me different anti-sickness meds for FEC2 so I am expecting to be fine. Apart from the sickness (which will now be controlled properly) the other SEs I experienced have been more a nuisance than something that has stopped me in my tracks, and I haven’t had any problem at all with some others that people have mentioned. My mouth felt like your mouth feels a couple of days after you’ve burnt it by drinking your tea too hot, but all over not just in one place. That affected my taste, but it was all manageable, and wore off mostly by day 16 or so. I also had the pink wee for a day or so, and a slightly irritable bladder for a week or so, but didn’t get any constipation problems, or indigestion, or sleeplessness from steroids. But again even if you do, there are things you can ask for that will fix them. (Movicol or senna for constipation, omeprazole or lansoprazole for indigestion, either short-term doses of sleeping pills or a good book for the sleeplessness). I did find an afternoon nap to be the most useful thing of all, so if you feel tired, rest.
The main thing is, if you have a side-effect, give the onc nurse or your BCN a ring and get something to sort it.
Oh, and hair started to come out in handfuls by day 14 so it’s all been shaved off now and I’ve found some good places to get headwear that I’m comfortable with. I have a Buff and a cap, and a couple of pretty scarves, also have a wig but don’t wear her, it all depends what you’re comfortable with.
FEC2 later this week, let’s see how that goes. I’m optimistic that it’ll be MUCH better than No. 1, and that life will carry on in spite of treatment.
I think it is important to remember that se’s are different for all of us.Most people feel/are sick with fec but the severity varies.Most people lose their hair before fec2.Many people find se’s cumulative-they increase with each cycle and some find the opposite.Taxotere is a b***** for most but not all.If chemo makes you very ill it isnt your fault,if you have minimal se’s it doesnt mean it isnt working.You dont succeed or fail with chemo-it is what it is.All that matters is that it does its job with the cancer cells.Don’t be upset if someone[was it Trisha Goddard?]goes to the gym/for a daily run/works through chemo.Lucky them-we arent all the same.Your medical team will do their best to make it bearable but one way or another you will get through it.It is ‘doable’ because it must be.
Valx
Val,
I love your last post, thank you! I’m stuggling with my SE’s but am getting there with the help of you lovely ladies!
Lisa
Well said Val!
I had horrendous sickness with FEC and had EMEND for FEC 2 and 3 and even that didn’t stop me feeling nauseaus. The TAX for me has been better, but SEs have been weird (sore feet, aching legs, red, blotchy face, sore mouth) and lethargy which has varied from one day to another as well as feeling very down which is so not like me. For me it’s had a cumulative affect as this cycle I’ve not managed to get into work by end of week 2. Today I feel brighter but not 100% so I am resting elegantly in the garden and on the sofa with a good book, slice of cake and a mug of tea. Final tax is next Monday and back on the merry-go-round I go.
Did Trisha Goddard really get to the gym each day - I don’t believe her!
Rachelx