Flora - fingers crossed for today x
Chrissy - im going to the Look Good Feel Better day next week, have heard its very good. Did you come away with a bag of goodies ? Thats good news about the Macmillan funding but i wonder how many hospitals have the gym facilities - how did you find out about it ? We are lucky enough to have access to a free twice weekly pilates course for 6 weeks at the David Lloyd Gym - part of the The Pink Ribbon Programme. Completely agree about the exercise - i have a PT a the gym but have been unable to see him recently and really miss it.
Keep warm xx
Flora can I say you deserve a medal to work throughout this journey and anyone else who is .
I admire you all for doing that.
I went to a pamper day yesterday at my local hospital don’t know if anyone else has but I would highly recommend it.
Also not sure if people are aware but Macmillan is funding hospitals that have action heart gyms. This means you can be referrred to the gym there for free for a 12 week programme.
i know that some of us it’s the last thing we would want to do but research has shown that some exercise can help with symptoms of fatigue. There are also dvds that you can do which gives you gentle exercises if you are like me and scared to socialise to much because of the risk of infection. I’ve been doing it in my living room when I’ve felt ok to do so.
Good luck everyone fingers crossed for the snow x
Welcome Kitty - not a particularly pleasant start to the chemo journey but hopefully you will be able to get some help with the side effects. I think we've all found the 1st cycle a bit daunting as you dont know what to expect. Was it the bone pain or other symptoms you had ? And yes its is all pants but we will get there !
I shaved my hair on day 10 1st cycle as i knew it was going to go and along with a fab group of friends and family we had a great night - managed to raise a load of cash for breast cancer care. Its not for everyone but it was the last bit of control so went for it. Whats left has started to fall out on from the 1st day of my 2nd cycle but i know people have started a little earlier than that. I did have a bit of thinning going on in the 'lady garden" in the second week which was a bit of a shock !
Chrissy - i have the same issue with replying but as i tend to reply on the PC i open the forum up on my mobile to look back on the previous posts. As for the hair, shaving was the way forward for me too - i now leave a little trail everywhere and so glad its not still long. Im HER2+ve and ER+ so hormones all the way.
Snow falling but also melting which pleases me - hate the slush !
Hi Kitty - I used cold cap for my first 2 rounds of FEC - on day 6 of round 2 now. My hair is starting to shed - I’m going to see if it just thins or falls in patches before I decide whether to use again. Hoping it will just thin and then regrow. I have a wig just in case or for a change.
Im really struggling with nausea this round - finding it difficult to do more than lie down on sofa as I get dizzy and feel sick - still taking Domperidone but not seeming to help.Ginger biscuits and ginger tea are quite soothing.
Here’s looking forward to better days - look after yourselves everyone x
Hi first time in making contact.
Really useful reading everyones different experiences. I am day 14 on first cycle of chemo and am only now starting to feel better. Had to inject filgastrim for 7 days which I had horrific side effects from. It s all just pretty pants really isnt it?
My question is when did people first notice their hair falling out? I am desperate to save mine. Used the cold cap for the first cycle which was pretty hellish but really want to save my hair. Just wondering when i ll know if its worked or not? Have got a wig but really dont want to have to wear.
Wishing everyone all the very best for their treatment and recovery
Stay well and warm
well my hair is starting to fall out and flora you are very brave shaving your hair I still can’t do it . My hair is long and I was hoping it was just Ribena that they gave me not epirubicin!
i find it hard writing a reply in thread as there isn’t the previous discussion there and so I forget everyone’ s name is there a tip or am I doing this wrong?
Was just wondering if any of you ladies are triple negative? I know there is a thread for it was just curious.
Lets hope this snow doesn’t delay treatment for anyone .
Thankyou I think it was Jude for the gelclair I will have a read.
hugs to everyone keep warm xx
Good to hear from you Macneech - was wondering how you were. Bumpy ride but glad you are feeling ok now.
I find all these so posts so interesting. Its amazing how all the side effects are similar yet so different, also the way they are managed can be so different. Really glad to have his forum to bounce ideas off and generally just off load and get reassurance that we can all get through this.
Big hugs to everyone and take care - think the next 24hrs will be interesting as far as weather goes xx
Checking back in. Due 2nd dose FEC 7th March.Doing good currently😁 Occasional cardboard taste in my mouth but otherwise symptom free.Anticipating the hair falling out soon - currently day 12 of 1st cycle.( did use cold cap).
Had vomiting and sickness the eve and following morning after 1st dose - given ondansetron and dexamethasone before and took for days 2-4.Given metoclopromide for as required but didn't use much as I knew it might add to my tummy gripes. Used my mother in law's Omeprazole to prevent the indigestion from the steroids/Brufen.(I have had some bad headaches especially first thing in the morning).
Feeling pretty much back to normal last couple of days - out and about/ doing housework- short bike ride.Whoop,whoop!
Had a big blip days 7,8 and 9 where I nearly collapsed a few times and needed to lie flat/ couldn't eat .This was more than fatigue(as my BCN had suggested)!!
As with all you other lovely pink ladies-(as somene said in a previous post my chemo brain doesn't allow me to remember who is who) but comparing our somewhat similar experinces, hopefully we are now better prepared for round 2.
Sending big hugs.
Wrote a post and lost it. I'm on dexamethasone (steroids) and metclopramide for antisickness. They give me another one in clinic pre-chemo too.
Indigestion not too bad now, Gaviscon sorts it out. As I didn't have my chemo, it appears that the steroids cause the indigestion, plus bloating and constipation. I'm taking Senokot for that. The piriton is making my head fuzzy and I'm moving about slowly, but managed a couple of miles with the dog this morning.
Shaved my head yesterday as the hair was getting painful. The last bit left will rub itself out. I'm in living room with a woolly hat on!!
Lady H what a scare! Hope you are feeling more back to normal. I have taken your advice and have taken my temperature today, just so that I know where I'm starting from. Also to make sure I know how to use the thermometer if I need to!
I am just a day ahead of you as had my first FEC on 14 Feb and due my next one on 7 March. Trying to keep clear of any infection risk meantime.
I don't know what I was given before the chemo infusion but had Ondansetron for two days (only 4 doses) and Metoclopramide for 5 days (3 times a day). I took them both concurrently and was only sick once - I think it was because I hadn't taken either of them soon enough. I also had Dexamethone steroids but I don't know if they do anything for the nausea. I did feel generally nauseous for about a week after the treatment but found that drinking green tea with ginger and avoiding dairy during that time helped to keep it at bay.
Back at work today, I cant believe how well I feel, after 2 bad days on Thursday and Friday my energy levels have improved over the weekend and even managed a couple of short walks. I am still taking each day as it comes as I know from last time that how you feel can change in a few hours. I have a 50 mile round trip for work but luckily have a friend who meets me half way and we car share from there, normally take turns but she is driving the 2nd part for now so I dont have to drive all the way.
Bibi - I found it got harder the more sessions I had, just listen to your body. it will tell you want you can and cant do, I am on Ondansatron for 3 days and them metoclopramide for the sickness, had the same last time but it definately isnt working as well this time. I always feel queasy and am eating little and often to help.
Wee Burd, im on slimming world so eat loads of fruit and veg but unfortunatley it didnt help with the constipation, I see the nurse on Friday so am going to ask her for something for next time. not going through that again. (and when I say im on slimming world, I mean is loosely now, I was being good until I started this journey but am just going now so I dont fall off the wagon to badly, dont want to undo all the work I have done so far)
Lady H, you have been throught it. Hope you get sorted soon, I keep forgetting to take my temperature, will try and remember, last time I had chemo I had the injections for 7 days to help boost the immune system but havent been given them this time and definatley feel more vulnerable, im not isolating myself as such but take note of people around me and if anyone so much as looks like they are going to sneeze I run (well walk quickly) in the opposite direction.
Keep well everyone
Gosh, Lady H, I thought my allergic reaction was scary, but sepsis is even more so. Glad you're through it now, but do take care xxx
I have Metoclopramide antisickness to take home, plus another one they give me just before the chemo itself, plus the dexamethasone steroids. Haven't had any nausea. Indigestion isn't too bad, and seems to be caused by the steroids, sorted with occasional Gaviscon. Not having had the chemo this last time, but still have the steroids, I can tell that the steroids cause a bit of indigestion, and bloating/constipation. The piriton is making my head fuzzy and slow, and I'm not sleeping well.
I think we're all allowed to feel a bit sorry for ourselves right now. I am getting my head around not being able to function very well, as I had been so confident I would sail through. Harrumph. I am lucky, as I only have 4 treatments (and a year of herceptin) to get through, so I am focusing on that. Should all be done by just after Easter, if we can get this 2nd round sorted this week!
Hugs to everyone. I had 8 treatments last time, and I got through it. We can do this! One day at a time xxx
PS. chopped my hair off yesterday:
Hi all - Day 5 of round 2 FEC and still feeling a bit rubbish - nauseous and dizzy- felt better first round at this stage but hoping it will improve tomorrow. Keep trying to do little bits around house but don’t last long so have given in and am on sofa again .
I was given Emend for 3 days , Ondasetron and Dexamethasone for days 2-4, and Domperidone to take as needed for antisickness.
Welcome Miss H - sounds like you have been through the mill it’s the temp thing and being in hospital- hope you are recovering well.
Take care everyone and look after yourselves- I have generally been keeping very positive but did have a wobble last night when I was feeling rubbish and realised I’ve got to do it another 4 times yet. Sure I’ll be fine once I shake this nausea off.
Hi all - day 4 of cycle 2 EC.
Flora - are you still getting indigestion ? I have started Omeprazole this time for the first 2 weeks and it has made a huge difference. Although mine wasnt indigestion as such i still had a very gurgly tummy and felt pretty rubbish. Eating every 2-3 hrs helps as well. My hair is coming out at a rate of knots too - bought some sink unblocker today as bathroom sink flow a bit slow ! Sounds like the work needs to take a back seat until you feel better - look after yourself x
Chrissy - Dont apologise - sometimes just checking in is all you feel up too. Its all a steep leaning curve isn't it but good to hear the Lansoprazole are working. I havent had a sore mouth touch wood but my oncologist recommended Difflam mouthwash if i did. Another one ive picked up on is Gelclair - mentioned on Macmillan site along with other info on mouth problems - i imagine you might have lookeded on there anyway ! Hope it settles soon x
Wee burd - Sore mouth not good but loving the new toothbrush, little things like that make all the difference !
Hope this week is a good one for you x
Miss Green - As Wee Burd said be kind to yourself - everyone is affected differently and at different times too. You need to just concentrate on yourself as you are the most important thing in this god awful journey. Take good care of yourself and leave the work - it can wait x
Hi Lady H - welcome ! Sounds like you have had an eventful start to all this chemo malarky - good to hear it is all settling down - must have been a scary time. Its all a steep learning curve so dont beat yourself up - good advice though. Take care and hope things continue to improve. x
Can i just ask for those in particular that have had nausea/sickness problems what anti emetic meds are you on ? I have Emend (Aprepitant) an hour before chemo and for 2 days after. It seems to be the gold standard treatment but have read that because of the expense some hospital dont prescibe routinely but maybe use if other meds dont work.
sorry I haven’t posted but I have been reading your posts.
ladies on cycle 2 I wish you well . I too have had terrible heart burn and indigestion since 1st chemo on 12th feb. I contacted my gp who prescribed Lansoprazole 30mg this has helped and obviously avoiding spicy, citrus foods.
Have found frozen mango nice for my sore mouth any other ideas for sore mouth.
My 2nd cycle starts on 5th March so I’ll be joining you soon x hugs to you all x
Wow that sounds scary Flora - glad you are OK. Hope they manage to sort out next week.
That comfort food really does sound good 😀😋
Day 3 of round 2 FEC for me - feel much better today - woke up after a good sleep and felt great - thought I’d make the most of the sunny day before this predicted cold snap arrives and pop to the local market - but by the time Id showered and breakfasted I felt the need to lie down agai- so another day on sofa for me. Ice pop to suck on for horrible mouth taste .
sadly have started to lose hair even though using cold cap - hoping it won’t be too much 🤞
Have a good weekend everyone.
Flora, hope your OK and are recovering from your ordeal. I had FEC-T last time and definately found the T worse than the Fec but not sure if that was beacuse I had already had 3 sessions of chemo and my body was tired.
Have had a bad couple of days, after feeling fine, just tired and going to work on Tuesday and Wednesday (after the chemo on Monday), I started with severe stomach pains due to consitpation, took 48 hours to 'move' never felt so ill in my life, then stupidly had chilli con carne for me tea yesterday which my body obviously didnt like and ended up with sickness and diarhoea all night, not good, luckily feeling better today and have even managed a little walk with the dog |(and hubby) so things are looking up.
I agree about food, eat what and when you need, I have been nibbling since Monday, as I have felt queasy everyday but it has helped. Trying to ween myself of the anti sickness drugs today and seem to be doing ok, although not eating much as dont want to start my stomach off again, sticking with toast and plain food
I started on the Clarityn/Piriton today after a bad couple of days, seem to be helping with the aches and pains. Fingers crossed. Dont know if anyone esle is trying them but I was told last time to take them all the time, not just during the first week or so when the symptoms are worse, if you keep taking them it stays in your systems and it definately helped last time so gonna keep taking them this time.
Hope everyone is having a weekend, we can beat this crappy disease, keep strong everyone.
I had FEC the first time around, and ever since, I've had to put clothes on as quickly as possible after a bath/shower otherwise my legs itch a lot (I moisturise a lot too). And I have ti wear pyjamas in bed otherwise I itch then too. Definitely get hot in bed now, but I think it is the onset of menopause caused by the whole shebang (I was 36 when I had the chemo first time, I'm 45 now).
My 2nd dose of chemo was aborted today as I had an allergic reaction to it. Herceptin plus 30 min wait delivered OK, TICK! But when the line switched from saline to docetaxel, as soon as it worked its 30 mls down the line, I had a reaction. Hot, dizzy, short of breath, tummy ache, weird feeling all over. Luckily the nurse was right next to me administering to someone else, so I just sat up, threw my headphones off (along with a clump of hair! lol) and said "I feel weird!!" and she was straight on it to take the line out, and the other two nurses straight over to administer piriton and hydrocortisone steroids. You could see they knew the signs and knew exactly what to do. I was then under observation for another hour, but the chemo was aborted.
Back next Wednesday to talk to the oncologist, but the nurses indicated i'd probably be back next Friday to try again, but this time they'll pre-pump me with more steroids and antihistamines.
I'm OK now. The steroids are fighting to keep me awake against the drowsiness caused by the piriton!
Celebrated still being alive by going to a lovely cafe in Abergavenny and having cheese and potato pie with bacon and beans. And a big slice of coconut and cream sponge. Talk about comfort food!
Morning all -day after second FEC - didn’t sleep v well , does anyone else get hit feet after FEC?mine are so hot at night they keep me awake .
I agree Whytefawn but i also think i made the mistake of not eating when i should have done and also maybe made some better choices. Ive always had issues with weight/relationship with food and before diagnosis i had cut down down dramatically on added sugar and bread and felt like i was in a good place with what i was eating. Due to the unpleasant taste i have sucked a load of sweets (sugar and sugar free) recently and along with the amount of bread etc i know my guts are not right. So this time without putting too much pressure on myself i just want to try and correct that. I know its not an exact science and we are all different but for me its part of keeping that bit of control when so much is unpredictable.
Have a good day everyone and hope today goes ok Flora 29 x
Oh wee baldy burd! I'll be following your example soon. Sending hugs. And others, please make it clear in posts how many days since your infusions and which ones as with this bubble brain I can't always remember. I've now slept most of the day, just up out to get some pre made pasta bake from Lidl at 4pm. I think it was a two portion one which I devoured. Slept after.
It's 6 now. Don't feel nauseous. Tired though. Hope to watch bit of tv then sleep most of the evening and tonight.
Infusion Tues, now Thurs.
Love to all.
Afternoon - glad everyone seems to be doing OK
I had round 2 of my FEC this morning- all went OK - home , had lunch and a nap and feeling OK. If I follow round 1pattern I will probably feel a bit sick tomorrow so got nothing planned- youngest daughter coming to stay for weekend tonight so looking forward to her company - and cooking 😊
Stay well everyone - take care of yourselves, eat well, drink a lot ( water not 🍷) , take all the meds you need to get you through .
Been sleeping lots and slightly nauseous. But haven't taken most of the anti nausea meds or steroids just one Emend and a couple domperidone. It's really not the horror I expected. I've been out for short walks. Just tired mostly and a little brain foggy. Haven't really wanted helpers round me as I can pretty much take care of self, and the thought of making conversation or worrying if they are bored is too much to take on.
I filled my fridge with lots of salad stuff I really don't feel like eating it. I'm actually wanting something more substantial. When out I had a toasted hot salt beef, cheese and pickle sandwich and it was heaven.
I really thought I'd be out for the count but it's not been like that for me so far days 2 and 3 post 1st EC just fatigue, brain fog and slight nausea. But I can eat and enjoy it.
With you weebird- thought I was doing ok until have nearly collapsed 2 days in a row. Couldn't even sit in the chair waiting for picc line flush yesterday in clinic.Thought I was going to pass out and make a scene.Any exertion seems to knock me out - clammy,sick,feint.Told day 7/8 low - so hoping I can get back on with life soon! One bonus - don"t seem to be suffering the aches like some ( even with the gcsf injections).
Big hugs to all xx
Cuddles - sound like you had a whale of a time, what a good start ! Hope you manage to get some sleep x
Flora - Hope the steroids help with the bone pain. I only had Dexamethasone 4mg for 3 days but the couple of days after were a bit grim, felt rubbish. I asked about the Loraditine and he had never heard of it being used. He did say that if my bloods are ok he could reduce the dose of Filgrastim so we shall see on friday. Think im going to take everything for a bit longer this time and regularly - anti sickness and painkillers - see if it makes a difference overall. I found a heat pack worked really well for the bone pain too. x
Weeburd - good to hear things are picking up. Hopefully it will continue now you are into the 2nd week but i know what you mean about getting your hopes up. As for working, im in a hospital so have been told i cant go back until all treatment finished - thats most of this year then so making the most of it.
Miss Green - hope you are doing ok x
Well work was OK, bit tired but no real side effects yet so managed OK, will play it by ear for tomorrow, I have a long drive, well about 25 miles each way, so its maybe time to have a couple of days off. I go to work to stay sane, I work in an office so its sitting down most of the time and (most) of the people I work with are really great and we have a laugh so it helps, and they watch me like a hawk and if im doing too much they soon tell me, this is the 2nd time they have been thoruhg it will me so they know what to look out for. Im vey lucky.
I am taking my antisickness and still driving, I havent read the warnings but I drove last time too and it was OK.
I had forgotten about the antihistamines for bone pain, I think I took Claritin and Piriton last time when on Docetaxel, i took them for the full 9 weeks I was on it and it definately helped. My nurse hadnt heard of it but was quite happy for me to try it. If I remember rightly the Clarityn was for during the day as it was none drowsey and the Piriton was for night time, but I will ave to check that. Thks for the reminder.
Cuddles. I cold capped last time but it didnt work for me, by the 3rd session my hair was so thin i had to have one of the paper caps on under the cold cap so decided it wasnt worth it. And the length of time it added to the treatment was a pain. Didnt even think about it this time.
I hope everyone has a good night, going to bed shortly to relax.
love Julie x