Newbie. Getting third lot of FEC next week, followed by 3 lots of T doxewhatsit. With MRI scans In between to monitor progress. The whole "journey" has been surreal and baffling, but I can hopefully offer some crumbs of positivity regarding the chemo sessions so far. The worst bit has probably been down to effects on the bowels. Any bloating/ strange pains in the belly area - get some Senna stuff into you. It works. Nobody tells you why you get constipation or diarrhoea, but both can be dealt with. Drink lots of water. Go out for walks. Don't be tempted to linger in your bed. Just get out. Meanwhile, we are in the middle of a heatwave - all that stuff about taking your temperature all the time is not helpful. You will be feeling the heat. If the heat feels different from hot weather or menopausal stuff, consult your thermometer. But don't sit with a thermometer stuck in you constantly - if you make sure you avoid random infections, just be sensible. The illness is new to us, but it need not take over our lives. I don't want to become a victim to this bastard. We are almost encouraged to expect the process to be crap, but it need not be. We can do stuff to make us feel we are in some sense in charge. Onwards and upwards!
Hiya, I worked straight through my Fec, I literally had the treatment day off (Thursday) and the Friday. I did three cycles of Fec and so far two T's. Found the T much harder and had all of this week off. xxx
I started FEC on same day as you,just trying to keep calm, been awake most of the night,stomach not been too bad but I am glad I have the anti sickness pills. Distraction seems to work. Keep drinking water and just eat nice stuff.
Hi Leekim, have you joined the monthly chemo thread for June 2017 starters? You'll get a lot of support there from others starting chemo at the same time as you. I'm on the May 2017 starters. If you want to look at our thread you can see what advice, tips etc we have shared from the beginning. I recently had my 3rd FEC and am doing really well. Top tips are: drink 2litres of water the day before, on the day and the day after treatment. This plumps up your veins for treatment and flushes your bladder through afterwards. Add cranberry juice to your water up to day 5 to reduce bladder irritation. Avoid any products containing alcohol and keep your skin well moisturised and protected from the sun. Eat natural foods and avoid (as much as possible) additives, fizzy drinks, supplements, grapefruit, I've cut out sugar and white flour products. The hairloss starts to accelerate after the 2nd treatment so be ready to shave your head around that time and have wig, headscarves etc ready. If you want to ask any specific questions, drop in on the May starters thread and you will find everyone keen to help. Try not to worry. You can do this. Xxx
Lots of good tips here , I added ginger cordial to water as made it taste better and could drink more . I too felt nauseas first few days and craving salty things but by week two and three felt fine and went back to work, especially week three even managed to go out for dinner.
I also tried and managed to go out first for small walks and then longer ones and I felt that gave me a bit of energy . I also had constipation first few days and took something till that settled down too
Hi - just read your post and thought I'd message.....it's a long one but if any of what I say below helps at all, then great 😄
I started my FEC-T regime on 27 February, so I'm now at the end of week 2 of my third cycle of FEC. I have my first dose of Docetaxel on 3 May, so I'm at that stage of being anxious of the unknown again as it comes with it's own side effects.
Obviously each person is different and reacts differently to the drugs, and depending on which NHS Trust you are being treated under, will depend on what drugs you are given to help with the side effects. I have been chatting to a number of women on here and now on a closed Facebook page one of them set up, and it does differ around the country. I have also read that they suffered with some side effects a lot more than I have with the FEC. Basically I wanted to say that it hasn't been as horrendous for me as some have experienced. I've got off lightly I think.
The drinking 2 litres of fluid - it helps the veins - advice, is a good one - the FEC is hard on them. Following the first FEC, for every dose since, I've had a heated pillow placed on the arm as they're giving the drugs, as it opens up the veins and the drugs go in better - no aching during either :).
I have been given what I now know is a good anti-sickness drug, before the chemo, and tablets of the same to take home. I've used a few for nausea which I have had up to a week after the dose, but thankfully on the FEC i haven't been physically sick. I did have upset stomach the first week, dizzyness, furry mouth - everything tastes of nothing, slimy, but I found Corsydl mouthwash off the shelf helps a lot. The hospital can give you specific one if you have bad trouble with that too. I've had tingling in my fingers and toes, but not too bad. The first few days of each cycle I have felt wiped out and as the cycles have gone on, that has been for longer periods. The fatigue has been worse this cycle as it gets hold of the system. Steroids will be given to you and some people say they made them feel worse... for me - they make me want to eat the contents of the cupboards 😮 and I feel more lethargic when they're finished.
With my cocktail of FEC I was given quite a high dose of the 'E' bit. That's the bright red drug which is quite harsh. Not everyone loses their hair with FEC apparently, or at least not all of it, but mine started to thin on day 14 of the first cycle, and virtually all came out in 7 days. They said it was quick but not unusual due to the dose. That was quite shocking really but I got used to it quickly wearing the 'grade 1' look. The scalp was so painful on and off during the day and the hospital advised the best thing to do was shave the rest of the thin wispy bits off. Once I got the courage to do it, wow such a relief, no pain anymore.
This advice is different depending on your chemo nurse, but my unit say to wear the darkest possible nail varnish on fingers and toes, to help try and save the nails. They can be badly affected by sunlight due to the chemo, so I started using that ready for my first dose.
But a big positive for me, has been in each cycle, on week 3, I've been able to go into the office for most of the week, and felt good albeit tired. I enjoyed the normality. But not everyone has that option if they have a more physical job - I sit at a desk and fix computer problems lol.
I have had 2 x chest infections and sinusitus thanks to the untimely bugs doing the rounds, and a UTI for good measure, so I've had to call the Chemo Hotline a few times, gone down to the Unit and had tests etc and come away with antibiotics, which has been an annoying pain, BUT that's what the hotline is for and we keep being told 'don't be afraid to call us'. They are all great and nothing is too much trouble. I find when the nurse is sat there injecting the drugs, I can chat to her about anything and just ask lots of questions :).
Well I hope you can get something out of the above, I hope it goes ok and it is daunting, but definitely reading others stories can help knowing you're not alone in feeling the way to do, or experiencing the same thing as them. And I hope you don't get too many side effects xxx
Hi Nikki49, thanks for those tips, I've bookmarked your post. I start my first FEC-T next week, I'm not sure if the chemo is already making me feel sick from anxiety and I haven't had any chemo yet! The mind and body connection is very important so I'm going to keep busy to distract myself. I'll stock up on ginger drinks, peppermint tea etc so I'm armed and ready. I work full-time and am hoping to continue to work some of the time but I guess I'll just have to wait and see.
I've purchased "The Royal Marsden Cancer Cookbook" and that has loads of tips for helping with nausea, taste changes etc, also 50% of royalties from the sale go to the Royal Marsden Cancer charity.
I finished fec-t 2 yrs ago this month.
my top tip for getting through it:-
Drink 2 litres of water the day before, the day of and the day after chemo - don't chug it, just sips throughout the day. I discovered this tip before 2nd fec and felt soooo much better than after 1st dose.
Steroids - take at 8am and noon, I had no problems with them or sleeping.
Take all the meds they give you - if you wait till you feel sick it's probably too late.
I was allergic to metoclopromide so this was changed to ondan something whch did nothing for me so ended up on Emend, granesetron and cyclazine - I still felt a bit weird or wired even lol
If you're sick you must tell your team they've loads of meds in their arsenal to choose from so don't suffer as there really is no need.
I felt much better on this regime but did suffer with awful pain days 5-8, paracetamol/ibuprofen/codeine combo didn't touch it. I felt like I'd been beaten up with a baseball bat.
Onc gave me the 'steroid tale' for the remaining doses whch yes was more steroids but it worked like a miracle cure.
as for hair - I didn't cold cap and my hair started to fall around day 17, I clippered it to a grade 3 before 2nd dose. My hair is now shoulder length.
good luck to you all x
I am not sure when I am starting mine just yet. Waiting on the mdcu appointment to discuss doses and plan it all out. Your tips for coping I will keep in mind. I am already drinking daily veg juices. Does anyone have any good recipies?
Thank you very much I will look up that website. and will try your tips for the nausea too 🙂 When did you get the extra medicine I got a box of medicine they told me that would be enought for 3 weeks and I will meet my docotor only after. Can I call them up if I feel really unwell and they will give me different stronger one?
Did you try cool cap too?
Thank you very much, I got my first chemo yestarday it was delayed I was happy a little bit for it 🙂 It was not as bad as I thought I fell nauseas now a little bit. When comes the hard part? They told me after 3 days I might feel worse is it true? Do you have any tips how I can reduce nausea? I used cool cap it was not uncofortable everybody told me it will be but surpringly it was ok I thought it will be colder. When is the hair starting fall out? They told me should be very gently with my hair any tips about what kind of shompoo to use? I heard baby shompoo but the nurse said that is not good.
I will start my first FEC next Tuesday, I am so scared and I still don't know should I do it or not. I have heard a lot of bad things about it. Do you think it is really worth it to do? I asked long term side effect and they only said about fertility is it only or there are anything else which they didn't tell us? How soon will loose hair? Can you work after the first one? I am living alone and I don't know if I can managed it alone or do I need somebody to help? I have a lot of doubt and scared, so sorry if I was a little bit jumbled.
My next is 3 December. I'm so tired today and I think it's the steroids not helping. Wide awake, hallucinations and my head is all over the place. Last lot today and hopefully that's it. I had this problem before with them when I was diagnosed with Crohns Colitis the damn things played havoc with sleep patterns
my Crohns colitis is playing up now so struggling with that, I'm eating better very small food often. Two reasonable days hope for a few more
I had my first Fec-T chemo on the 9th, like you felt ok after if a bit "weird", then 5 hours later sickness came on and after 24hrs of trying to cope, I gave in, (during the 24hrs, I did call the chemo hot line, they said go to gp for stronger anti sick pills, despite the fact I was keeping NOTHING down grrrrrr, anyway, tried all that, and by the way I couldn't get on my feet let alone to the docs!!) then called 999, got fast track thro a&e and onto a ward for IV drugs, phew! came home 36 hrs later and felt rubbish for about 6 days, This is day 9 for me now and I am at last feeling okish and when I have my pre assess before next chemo I will be coming home with the strongest pills/suppositries etc that I can lay my hands on haha!!! Also, I felt the last part of the Fec went in too quickly because I felt faint so it is possible to have that bit in IV over 30 mins. Anyway, I hope you are feeling bit better now, whens your next one? My next chemo is 30th so I am trying to make the best of every moment that I feel ok!! Keep the chin up xx
make sure you tell them at your appointment before the next treatment, there are many different anti sickness drugs I've just had mine changed from domperidone and ondansertron to something else which is sapping my energy but I have no nausea.
Hi Krinkle (great name!). I had my second FEC on Friday and I am just starting to feel back to normal now (wed evening) both times I had nausea & vomiting and absolutely no energy. The best thing I found is to eat little and often, whatever yiu fancy, I enjoyed smoothies, soup, toast and marmite, ginger biscuits. Ginger ale is good to drink and rest as much as you need. It does pass and then you soon forget! Good luck! Chris x