February Chemo Starters 2018

[Macneech]

Oh Wee Burd - scary stuff! I am a nurse myself but am paranoid that I might think I am ok and then miss something really serious so don't doubt that you did the right thing ( even with the 999)!

I am day 18 Fec today and definitely started losing hair yesterday - thought I would wake up with lots on my pillow this morning but it's not too bad! Have a wig and scarves on standby and woolly hat if stays cold ( not normally a hat person)!

Has anyone on here got a good hat website they would recommend ??

Still got a bit of a watery left eye but otherwise symptom free so like you trying to stay positive about round 2 next week ( we will get through this)! Xxx

[Wee Burd]

Hello all, now on day 18 of my first FEC cycle and beginning to dread next week and going through the process of blood test and oncology appointment to find out if I'm ready for the next cycle. It was difficult last time not knowing what to expect but in some ways it's worse this time knowing what is ahead.
I have been feeling pretty good and managing to get out for walks, even with all the snow however had a scare last night with chest pains. Initially thought I had pulled a muscle however it got worse instead of easing off. Consulted the symptoms check list in my chemotherapy record booklet and ended up phoning 999 as per advice. Ended up in hospital overnight being checked out for various heart issues and possibly tiny blood clots but thankfully all clear. I was advised to take aspirin while waiting for the ambulance. All we had was alka seltzer and I had to chew a tablet without dissolving it in water. It was vile but seemed to do the trick. So I spent the night feeling very guilty for taking up medical time on investigating me for something that might have been a dose of wind ☹
Feeling really tired now after all the excitement. Time for bed and fingers crossed for next week going to plan.
It was a first though - never been in an ambulance before. As ever all the paramedics, doctors and nurses and even the hospital porters were marvellous.
Keep well everyone.
PS feeling my scalp itching as if I have dandruff. Is this the start of the hair coming out?

[Macneech]

Evening all - good to read all your posts.Amazing ladies dealing with a horrible time but trying to stay so positive. Fortunately I  am  having some good days.Day 15 after 1st FEC.Eyes a bit sore and nose a little runny - but that could be the weather??However losing some pubic hair! I suppose this( as some have said) may even mean nasal hair - explaining the runny nose??

Still holding on to my head hair however trying not to stress it- not itchy or painful yet ( I used the cold cap but not holding out much hope).

Not working - as am a hospital nurse ( exposed to lots of poorly patients with infections).Well done to those venturing back!!

Big hugs to everyone.

[Flora29]

Poor you, Jude 😞   That middle bit seems to be when the chemo really kicks in and attacks everything, so no wonder you're feeling low.   And I think mood swings are all quite typical. Not only are we on a ton of drugs affecting it, we're actually going through something rather major and rather horrible, so are allowed to feel a bit down about it now and then.    I try and be as positive as I can be, but I do have a cry every now and then.

I'm still getting used to my bald head in the mirror.  Well, I still have a Grade 1 GI Jane haircut, but the bristles are rubbing out a little more each day.  I'm almost tempted not to bother with the wig. I haven't had to go out anywhere except hospital so far, so have just worn hats as no-one there cares about 'another' cancer patient. But my test will be when I go back to work next Monday/Tuesday.   Trying to keep my wig on straight and chat to people at work for the first time with it on will be a test.  I wonder if just continuing with hats might be better than faking it, IYKWIM.

My delays are frustrating, but I have been SO well cared for through it all.    The nurses have seen it a million times before and react so quickly.   Next week to try again, and in some ways I am really glad that I'm now going onto what seems to be a better (more expensive, more refined) drug that should (fingers crossed) go more smoothly from here. We shall see, but I've read good things about it.  

[jude51]

Holy moly Flora - how frustrating ! 

Bibi - good to hear you are over the worst - i drank loads more this time and im sure it made a difference. I bought a Neom candle this week which is lovely - will look at the spray too. 

Last 36 hrs have been miserable - exactly the same happened last time on day 5-6. Very shaky, nauseous and just awful, cant get comfortable and really low in mood. Despite everything i have said about the lack of hair for the first time it really got to me. I looked in the mirror and realised that i looked like a cancer pt...i bloody felt like one at that moment and that all this is really serious and very scary. Just kept telling myself it would pass and hey presto today is here and all is good...well a bit better ! I suppose i have been quite fortunate in that i have managed to cope with all the emotional ups and downs but that took me by surprise.

I also found last time that day 7- 8 i ate for england and really needed it. Today i've had 2 crumpets, fruit/yog and granola, a banana, 3 digestive biscuits, 2 chocolates , a bacon roll and hot chocolate with cream/marshmallows in the local garden centre cafe, 2 ginger biscuits and have just scoffed a packets of cheddars and a fruit scone...its only 2.30 pm !!!!  I went out for a walk into the village with a friend and felt so much better for it despite the gale force winds - highly recommend the fresh air to get things going. 

Take care everyone xx

[Lady.H]

Bibi so.good to hear you're feeling much better 😁

Flora am so sorry your Chemo didn't go ahead again, fingers crossed the other drug will be ok. If you do get a chance to go the Gwent the staff are amazing and it is a big unit.

Chrissy I feel for you with the hair, I've Been more upset over losing my hair than all the treatment I've got to have. But after 1st chemo I've just accepted it now and when it's time to go I'll shave it off. Glad others have found this liberating, knowing we're not alone.

I did cold cap but hair starting to thin already 😣 2nd chemo on 8th so will it'll come out soon after that .

Take care in the snow everyone xx ☃️❄⛄

[Bibi]

Morning all - finally I have woken up feeling good - chemo effects  seem to have passed - thank god 😊 Wondering whether I didn’t drink enough this time and that is why effects hung around for so long - will focus on that next time. 

Had a lovely sleep after drinking Sleepy Tea and spaying pillow with Neom Pillow spray - kind gift from sister - can recommend- best sleep in a week. 

Hope you are all feeling OK - Flora hope everything works out for you - sending you hugs. 

Im at a point with hair as well trying to decide - it is coming out but not in patches just thinning- can’t decide what to do - may leave for a few more days and then see how it goes. 

I have a pamper session booked for tomorrow but am wondering whether I will make it with all this bad weather - so far we have had v little snow (Midlands) but it is due tonight and tomorrow. 

Have a good everyone , stay warm and be kind to yourselves.

[Chrissy68]

Thank you for all your support.

ok I’m going to take the plunge and do it or buy some gorilla glue!!

i liked the comment about hubby having 3 women on the go made me laugh .

take care everyone let’s hope the snow doesn’t last I don’t fancy walking 4 miles to hospital tomorrow!

big hugs xx🤪

[Flora29]

I know it can be so upsetting to lose you’re hair. It’s part of our identity. But it is something we have to accept, so like the others I’m trying to focus on time saved washing and styling, money saved with not colours and cuts, and that it grows back relatively quickly. And you’ll probably still look like you with short/no hair. Just a different you for now.

Big hugs. I know it isn’t easy xxx

[Jujubee]

Chrissy.  I cold capped last time as the thought of losing my hair scared me. Unfortunately it didn't work and it started coming out and was very itchy and painful.  I made the decision to have it shaved off and it was the best decision. No more pain or finding hair everywhere. And I got 2 lovely wigs and some scarves. My husband used to joke that he had 3 women on the go.  

I'm not cold capping this time so it's just a matter if time before it starts to hurt and fall out.  I will admit that I'm not looking forward to losing my hair again but I know it grows back and took less than 6 months to be a decent length so gonna focus on that. This time next year we will all have a full head of healthy hair again.  

Flora hope they get you sorted out with your meds soon. 

Hope everyone has coped ok with the weather.  I had a snow day from work.  Too stressful driving in those conditions. Hope it's better tomorrow.

Take care everyone xx

[Jujubee]

Chrissy.  I could capped last time as the thought of losing my hair scared me. Unfortunately it didn't work and it started coming out and was very itchy and painful.  I made the decision to have it shaved off and it was the best decision. No more pain or finding hair everywhere. And I got 2 lovely wigs and some scarves. My husband used to joke that he had 3 women on the go.  

I'm not cold capping this time so it's just a matter if time before it starts to hurt and fall out.  I will admit that I'm not looking forward to losing my hair again but I know it grows back and took less than 6 months to be a decent length so gonna focus on that. This time next year we will all have a full head of healthy hair again.  

Flora hope they get you sorted out with your meds soon. 

Hope everyone has coped ok with the weather.  I had a snow day from work.  Too stressful driving in those conditions. Hope it's better tomorrow.

Take care everyone xx

[Wee Burd]

Flora sounds awful experience again - fingers crossed for you that the next time it's okay. It must be scary and frustrating at the same time.

Chrissy you don't have to be brave to get your hair cut - I found it immensely empowering to take back control about one thing and also liberating not to worry about having to spend so much time looking after it.
Having said that I don't know how I will feel when it does start coming out but just go for it. If you can rid yourself of one of the unpleasant symptoms you might have more energy left to deal with the rest.

Hope this hasn't come across as cheeky- it's meant with the best of supportive intentions.

[Chrissy68]

Oh flora I’m so sorry to hear you not having a good time with chemo. I will keep my fingers crossed for. I hope the new drug will work without problems you must be getting so fed up with it all.

my hair is so sore and falling out in clumps and I just don’t know what to do I’m not brave. How can hair hurt so much ? Why does this have to happen ?

[Flora29]

Chrissy, glad you're feeling better through week 3. Almost human again, I hope!  Those exercises sound very good - I am trying to get out with the dog on days I'm not too wobbly.  

Second attempt at docetaxel didn't work today.  Despite lots and lots of piriton and hydrocortisone beforehand, I still had a reaction.   They gave yet more of both drugs to reverse the reaction and a decision was taken not to try again.   I'll now be re-booked for next week and will try with abraxane instead, which is the same drug in a different solution.   It isn't usually given for primary BC, but they do give it for diabetics and those with allergic reactions. A couple more days of steroids and piriton to have, and then I hope I'll get a clear head again.    

[Chrissy68]

Hi Jude yes I got a lot of No 7 goodies I thought it was brilliant a nice treat .
Well I’m going to ring David Lloyd and see if they do it here thanks.
I found out by chance I’m nosey and google things and found out . The dvd was Macmillan too and Its good for days you can’t do a lot but if you can you can bump it up the next level . It’s weird my gym membership was due just before my diagnosis and I thought I’d wait until I’d seen the consultant. I’m glad now I didn’t pay out as I wouldn’t have been able to go following surgery as I had mastectomy and reconstruction together so was out of action for a while but now I feel I could do a little more on week 3 of chemo because I was dead the other 2 !!!
Keep warm everyone x

[jude51]

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

[Chrissy68]

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

[Flora29]

Kitty, I’ve not been using the cold cap and hair started to loosen up properly on Day 17, and I shaved it off on Day 23 as it went very flat and was pulling at my scalp and hurt a bit.

Good luck at Salon Wills, Lady H. The blonde lady there was very helpful. I love the location of the shop too! A lovely arcade. My mum and I made a day of it, when we went. I haven’t worn the wig yet though. I’ll Probably only wear it at work.

I’m continuing my exploration of Welsh hospitals as will be re-attempting chemo #2 today at Merthyr Tydfil. Because of allergic reaction last Friday, they want me in a larger hospital just in case, but couldn’t fit me in at Velindre. I had the choice of today or Monday, but want to get this done. Am still on piriton and they’ll give me more by IV. If it doesn’t work, they’ve mentioned moving to abraxane, which is the same drug in a different carrier fluid. Apparently it tends to be the formulation, not the taxane that your body reacts to. And also my reaction - the second treatment of the second time of having it - is typical.

Have accepted I’m having 2 weeks off work at least right now. Part of me is relieved, partly annoyed! But I can’t focus on it anyway.

[Lady.H]

Hi Kitty, similar to you I'm.day 13 1st cycle with cold cap. I was told it could start thinning day 20 so yet to know if it worked. Am not using next time so i assume will.come out quite quickly.

I've booked an appt for wig next Wed- Flora am going to salon wills.

Bibi i hope your nausea passed soon, must be dreadful.

Congratulations Jude on raising your money for shaving your head, sounds like you had a good evening with friends. Maybe I'll do so.etging similar when mine goes, safety in numbers!! Xx

[jude51]

Hi Ladies,

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 !

xxx

[Bibi]

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 

[Kitty75]

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

Kitty

[Lady.H]

So great to wake up in my own bed this morning 😁

Chrissy if only it was Ribena!! Did you use the cold cap? My cancer is oestrogen + and HER2 +

Flora I'm having treatment at the Royal Gwent the staff were amazing during my stay. Been to Velindre for my MUGA scan (next one 9th April). Thanks for wig advice I wasnt sure whether to use Cardiff or Usk but I'll go Cardiff now as my breast care nurse also said they were great. I hope you manage to get your chemo underway again this week.

Miss green hope your headache and thrush clear. Look after yourself and try not to worry about getting to work. You're number 1 priority is you.

Wee bird I'm not using cold cap 2nd time. Felt so spaced out after 1st time If I can alleviate one side effect that's a positive. My hair will come out by my 4th cycle anyway so have decided to embrace it, as much as that does make me cry 😭

Hope all others with side effects are feeling stronger. Take it easy. Xx

[Chrissy68]

Hi ladies

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

[Flora29]

Hi Lady H. Glad you’re home now. 6 days in hospital can’t have been much fun 😞

Which hospital are you based at? I’m having treatment at Nevill Hall in Abergavenny and Velindre in Cardiff. I went to a wig salon in Cardiff (Salon Wills), and they were great. Good range of wigs and sensitive ladies. Tbh, last time I went through this (8 yrs ago) I went to the guy in Usk (Peruke) but found he wasn’t listening to what I wanted. But they’ve moved premises and got a second shop since then so might be different people.

[Wee Burd]

Hi Lady H my 4th to 6th cycles will be T and herceptin but I can't remember if pertumazab will be in there too. I have already had lumpectomy and sentinel node biopsy back in December. I will be having radiotherapy after the chemo and tamoxifen after that.
I had the cold cap on first cycle and found it was okay. Who knew that swimming in the Moray Firth on summer holidays would get me in training for chemo! I am going to try it again although since I have had my hair cut really short since the last time I might find it too cold next time!
Going to get my wig tomorrow. Still not sure if I will wear it but if my hair does start really coming out at least I will have the option.

[Lady.H]

Thanks everyone, pleased to say my temp stayed down and I've been let home. Such a relief after 6 days in hospital. So good to hear everyone's different journeys as they are so different. Wish I'd joined the group from the start but glad I have now.

Macneech and weeburd, sounds like were on the same track as my 2nd FEC is 8 March. Won't know until bloods on the 5th if it will be delayed. My 4-6 cycles are T, herceptin and pertuzamab. I then need lumpectomy and lymphnode removal followed by radiotherapy. Are your latter cycles the same?

Flora - you're looking good 😁 I used the cold cap but won't be 2nd time as I'm not sure if that made my spacey head feeling worse. Was it you that lived in abergavenny? I'm going to Usk to sort my wig and wonder if you went there?

Well done to those of you going back to work. Don't think I could contemplate that. But I do hope no one overdoes it, listen to your body.

Take care everyone xx

[MissGreen]

Thanks ladies for your positive words earlier. These forums are so useful. I find more on here about the real side effects of chemo. It's so reassuring to know you're not alone with the weird and wonderful side effects that chemo throws at you.

Today I had a headache from hell and it made me so nauseous I couldn't take my Capecitibane tablets. GP has also confirmed Oral Thrush on top of it all. The chemo unit has told me to not take it for a few days.

On the plus side the dizziness/disoriented feelings haven't been as bad 😁

Love , hugs n positve thoughts to you all

T

Xx

[MissGreen]

@flora29 your hair suits you like that 😁

Xx

[jude51]

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

[Macneech]

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.

[Sue C]

Looking good Flora!
I think going out with a woolly hat would really suit you xx

[Flora29]

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!! 

[Wee Burd]

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.

[Chrissy68]

Hi jude51
Hello to everyone keep strong.
You asked about medication on my 1st cycle I had emend 1 hr before chem then sure they gave cyclizine IV and dexametasone before chemo . I went home with reduced dose emend for 2 days dexamethazone 3 days and domperidone 3 times a day as required . Sickness and nausea lasted 4 days followed by indigestion on and off for days until I started lansoperazole. Lethargy lasted nearly 2 weeks . Week 3 I feel human again just sore mouthback ache and less tired.
Hugs to everyone x

[Wee Burd]

Jude,

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.

[Jujubee]

Hi All

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

Julie xx

[Flora29]

Hi All

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: 

[url=https://flic.kr/p/21WgVYo][img]https://farm5.staticflickr.com/4767/38682891570_baa93980b8_b.jpg[/img...]

[Bibi]

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. 

[jude51]

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. 

[Lady.H]

Hi Everyone

New to the forum and had my 1st FEC on 15 Feb.
Good to read about all your experiences and side effects. I used the cold cap. I was spacey, agitated and anxious all over the weekend, couldn't sleep. But no sickness mouth sores or constipation which was good. Just as i was feeling normal on Tuesday I picked up an infection and was taken into hospital on Wednesday with neutropenic sepsis and temp of 39.1!!

Am still in now and after 19 iv antibiotics my temp is finally "normal" and am hoping to go home tomorrow. Not sure yet if it will delay my 2nd cycle on 8 March.

In hindsight I should have gone in earlier as temp was low 37's all Tuesday but thought I'd be ok. So please keep and eye on your temp as it really is life threatening and dont hesitate to get it checked out. Xxx

[Wee Burd]

Don't beat yourself up Miss Green. Everyone is different. Don't forget you are ingesting deadly poison and asking your body to absorb it and then recover from it so it's no wonder that you feel wiped out. Getting better has got to be your priority so you need to give yourself a chance to do that. Work will go on whatever happens - you need your resources for yourself. Hugs to you brave lady x

[MissGreen]

Hi all

Well I was hoping to go back to work tomorrow, had my Docetaxel last Monday and have been taking my Capecitabine daily since then, but I have been persuaded not to.

I still keep getting the dizzy spaced out episodes and and don't even feel safe to drive. I try and go out for fresh air but need someone with me and afterwards I can sleep for England. Last time I had chemo, albeit 15 years ago, I was very sick but don't remember feeling so out of sorts and so fatigued.

Don't mind admitting I am feeling a little sorry for myself at only 1 week in and shouldn't be as lots of you seem be to having a harder time of it.

Sending hugs to you all 😁

T
X

[Wee Burd]

Hi everyone,

Flora what a nightmare, I hope it all goes well next time. Sounds like the nurses were really on the ball, thank goodness. I have no idea how you manage to do a 40 mile each way commute while going through treatment. You must be made of steel! I did a commute like that for 18 months when I was completely healthy and was like a zombie most of the time!

Jujubee when I was getting constipated I ate as much fruit as I could manage and dried apricots but the thing that seemed to get me moving in the end was a bowl of sultana bran.

After nearly a week of sound sleeping at night I have now been awake since 04.30 and can't get back to sleep. I have a dry throat and tickly cough so decided to get up and have a hot drink. Now sitting wrapped up cosy on the couch with the dog snoring by my side. At least he's quieter than Mr Wee Burd whose snoring was a real barrier to me managing to nod off again!

I have started to get mouth ulcers, fortunately not painful but the inside of my mouth is definitely more sensitive and my extra soft toothbrush is now too harsh and I have had to get a softer toddler toothbrush. It's a lovely pink one with a rubber sucker on the end so that I can stand it on the edge of the sink! Silver linings and all that!

Well my tea is finished so I will head back to bed and hope to drop off this time. Have a good Sunday everyone and good luck for the ones starting round 2 next week. I just have to keep well for another week before I jump on the merry go round again.

[Chrissy68]

Hello everyone

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

[Flora29]

Ice pops for mouth taste. Good idea, Bibi.
And thanks for the tip on taking the piriton all the time, Julie. I’ll definitely keep it up until I see the oncologist on Wednesday and see what she says. But I have a 40 mile each way work commute, so will have to see about having it all the time, as I’m too tired on it to drive.
Sorry you haven’t been so well. Keeping gut health seems to be the hardest thing to balance. Even without the chemo, I’m getting indigestion from the steroids.

Oh Jude, what a bummer of a wait. Let’s hope it’s better next time.

Shaving my hair off tomorrow. Tons of it has come out today. The wig will keep me warm for this cold snap!!

[Bibi]

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. 

[Jujubee]

Hi all.

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.

Julie x

[jude51]

Oh crikey Flora I'm glad you're ok - bit of an eventful day ! Fingers crossed for next week x
So I had 2nd cycle EC yesterday. All went fine except for the 4+ hrs wait ! They were one nurse down and issues with pharmacy plus 56 pts to get through compared to the usual 40ish - they were constantly apologising but still smiling. So a very long day - got there at midday and home at 7..ravenous ! Good sleep and just the usual bit of nausea and headache this morning - pills popped and hope for a lazy day with a gentle walk thrown in for good measure.
Have a good weekend ladies x

[Flora29]

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!