Starting chemo in March 2014

[Porkie]

Hello ladies, I wonder if I can join your thread for some support having commenced chemo in March. I usually post on the secondary forum because unfortunately when I was diagnosed three years ago I had spread to my bones. Had been well on hormone tablets since diagnosis until recently but now need to do chemo to kick into touch and then hopefully control with herceptin. Am having 6 cycles of docetaxol, herceptin and perjeta another drug. Have found both cycles quite tough - now day 8 of second and very tired but I was really well in the last week before the cycle so thats keeping me going. Hair all gone now - but the wig and the numerous scarves I bought are serving me well. One of the thing I find hard is boredom! Never been one to sit down and watch daytime tv so am so glad that we are going through this during the spring / early summer because I love being out in the garden.Jackie x

[Donnaandfamily]

Hi Lollymum

I took 2 domperidone x 4 daily for the first 4 days...then weened off.....ths meant that I also took it alongside the emend......the nurse said to take the domperidone to ward off sickness.......so that you get through the first few days ..... x Donna

[LollyMum]

Hi all

I had my first chemo in March - next one is next week. I'm on FEC x 3 then will switch.  Can't believe someone else has a prickly scalp - every hair root hurts. I thought it was my new short hair cut.  I'm not cold capping as I go to the loo all the time whilst they give me the chemo! Embarrassing. I asked for the emend tablet before chemo as I didn't want to be really sick. I still felt really awful the first night of chemo. What I'd keen to ask you, ladies, is on the day of chemo, having taken the emend before chemo, then the other tablet in the evening can you also take the tiny "dom perignon" tablets. I didn't, but I'm wondering if they'd help. 

Wishing everyone on this thread HUGE positive outcome results. 

[ProjectKylie]

I have a portacath its fab, no risky leakage for me. It's like a button in my chest and has been a breeze. x

[Mel51]

Morning ladies. Hope you're all tucked up asleep. I'm off to have my PICC line put in so better get a move on. Here's hoping it all goes to plan - not ooking forward to it.

[ProjectKylie]

Hi and good morning, dh, I did have cold cap again I found the cold a relief from my prickly scalp, I had time and I don't find it particularly uncomfortable. So for me no reason not to. Mel 51, Eitaki I'm fine, thanks to Emend which I was lucky enough to have last time too. It's 4:17am good old steroids, mind you I was awake this time yesterday too. I have a free duvet day today, I hope you all do too. x

[Eitaki]

Number 2 done here also! dh my onc also prescribed me some emend this time round, had to take one an hour before they did the chemo and have 2 more for the next 2 days. I did have some nausea by about 6pm but its worn off now. I just cannot sleep! I think its the steroids keeping me awake, they gave me double dose this time.

[dh]

Fec2 done! 4 to go. After a rough ride last time, today they gave me emend they said it costs £400! It's only 3 tablets!!) And some other extra tablets and said they would be very surprised if I'm sick. Touch wood I'm ok, just shattered. Didn't bother with cold cap this time. So much quicker and nicer without it.
Project kylie did you cold cap? X

[Mel51]

Thanks ProjectKylie. I'm just going to take each day as it comes. How are you feeling after today?

[ProjectKylie]

Mel51 - I had my 2nd of 3 FEC100 today and was asking about TAX I'll have 3 and have been told it's easier. I've no idea how this is measured. I'm no Dr but perhaps your tumour is now less dense or now has less ability to grow ? Don't be disheartened that it hasn't shrunk. Chin up, keep smiling and rest x

[Mel51]

Just back from onc and bloods. Onc measured my tumour after FEC1 and no change in size. I kind of expected this but she seemed a little surprised. They're going to stick with FEC for this coming chemo, but then they might switch to Taxotere. Bit concerned about this as from what I've read on here, Taxotere is a big step up from FEC. Has this happened to anyone else?

[Donnaandfamily]

Hi Mel51

i had pain in my breast and node removal too .....some days my breats felt harder than others.......good luck for Friday x

[Mel51]

ProjectKylie - hope the chemo goes well for you today. I have my fingers/toes everything crossed for you.

I'm off to have my bloods and see the onc later today, before PICC line fitting tomorrow morning and chemo Friday. Can't say it's the most thrilling week. Nervous about tomorrow, but hopefully it'll be worth it in the long run.
Been fine this last week or so. Been quite busy around the house and even went on a 2 day course for work last week. It's been quite nice to be back into a normal routine again. I guess I just have to accept the slowing down in the week after the chemo , knowing that life as usual will return.
Had some pain around my scar from SNB op which I had a month ago and in the breast where the tumour is - anyone else had this?
Hair update - noticing a few here and there, but not a big drop yet. However, legs, underarms and (she whispers) down below is well on the way out. Sorry for sharing 🙂
Sleep pattern a bit all over the shop at the minute, but once I get those drugs in me on Friday, sleep won't be so much of an issue!!
Will update with PICC line info tomorrow.

[ProjectKylie]

It's 5:08am I've been awake for 2 hours and have FEC2 tomorrow at 9. The chemo session isn't keeping me awake, it's my head. I feel like I'm laying on a pillow of nettles. I hope the cold cap gives some relief to the prickles later. Have a good day all xx

[Ali24]

Thanks guys.  Good to know that Im not the only one that had palpitations.  It is really frlightening. 

Feeling much better now but hoping its not the calm before the storm.  Scared enough of these hospitals.   

Going wig shopping tomorrow.  I got my hair cut really short so to get an idea of what the wig would be like on my head.  Met some one at hospital who just shaved all their hair off - such an upbeat and lovely lady.  A real inspiration. 

Hope everyone doing okay tonight.

x

[dh]

Project kylie did you add me to the group? Still can't see it? X

[ProjectKylie]

Thanks Choccy61 useful advice. I have bought a wig darker than my usual colour hoping the colour will distract Mum away from the fact it's not my hair. I have also had my hair cut into the shortest hair do ever a pixie / crop do. I think I look like Jo Brand now !! No offense Jo. I've posted pics to FB group I've mentioned before, feel free to join the group. X

[Choccy61]

Hi everyone, I was in last year's March group and this time last year my hair had just started to fall out (my attempt at using the cold cap not being very successful). Now I have to use a hair dryer and 2 weeks ago I had it coloured - came back very grey! Anyway, I just wanted to say that at the moment this probably seems a lifetime away to you but time will pass very quickly and this time next year that will be you :). I'm already having bad hair days despite vowing never to complain about my hair again!

I haven't read all your posts but just scrolled down a few. I had FEC-T and had palpitations after FEC, not so much when I changed to Tax, but it is quite alarming!

Eitaki, I also had a suspected infection in my boob and was on antibiotics when I started chemo, then was prescribed a follow-on course of stronger ones by a doctor at the hospital about 5 days after my first dose, so mine wasn't delayed. I hope yours isn't, you just want to get that first one out of the way.

When shopping for wigs, when you still have quite a bit of hair, your head will be much smaller than you think without hair! My wig was way too big once I'd had my remaining hair buzzed off!

Good luck to you all.
xx

[Donnaandfamily]

Hi Ali

sorry to hear you are feeling sick 😞 ........as for the palpitations...I had those.........they say common side effect

.I have only just got home from hospital this morning...Awoke at 2 am hot temp over 38.....Pulse 110.......... Lots of blood tests later...Not neutropenic.....infact the opposite high white blood cell levels ......which they think is due to infection or viral.somewhere........had ecg, chest x ray and urine tested.........Eventually sent home with oral antibiotics.......Feel a lot better now . Hope you start to feel better soon......and everyone enjoys mothers day xx

[Ali24]

Had chemo Friday. Totally under the weather since. Nausea the worst. Took to my bed most of Friday and Saturday. Having palpitations today. Has anyone else had this. Hope all you girls doing well on this Mothering Sunday.

[Stelwah]

ProjectKylie - Really feel for you trying to be upbeat and 'business as usual' for your mum, sending you all the best. Are there any other wig places you can try? I tried on about 12 at the specialist place I went to (West Mids), went back again as they'd tried to order one in for me in a better colour, and ended up with one I'm pleased with.

[ProjectKylie]

Evening all, my wig shopping session was moved to today, it was a hairdressing salon in Eastbourne. I tried 3 on, all reminded me if Gloria Hunniford, not the look I was going for. I ran my hands through one though it then became more me, £125 though. I haven't bought it yet as I haven't had the, yes, that's the one feeling at all. Inside had mesh and size adjustment, I wish I taken more notice and noted the brand. It just didn't sit right though. Time is against me as FEC2 is Tues and I need to disguise hair loss from my 82 year old Mum with dementia, I haven't been able to tell her about my BC diagnosis or treatment, there's absolutely no point upsetting her 😞

[Debs-]

Love to all and lots of strength going out to you all that are loosing your hair. My feeling more  human statement ended me up in hospital chemo emergency with high temp on day8 friday. Was discharged today after lots of treatment and lots of antibiotics,am on temp watch still,watch this space.They did e.c.g ,chest scan etc ,blood checks,nothing to nasty infection but interesting listening to the advice nurses give to people like us ringing the chemo emergency line(my bed was right near ear shot ;-).... My male nurse for the night did have a kip in the bed across from me during the night !!!!! What a journey we are all on xx

[Buttercup01]

Hi All, 

Well considering how awful my first chemo went I was dreading round 2 yesterday, however, with the adjustment in my steroid dose I can't believe how good I am feeling. I seem to be waiting for that sledgehammer moment but its not arriving! Yipee! Just tired all the time, dosing every couple of hours.

Just waiting for the disctrict nurse to turn up now to give me my white blood cell booster.

Ali24, Did you end up having your first treatment yesterday after? How are you feeling?

Eitaki, sorry to hear your news, I hope your chemo can continue on tuesday, we all want to get through this as quickly as possible!  

Donnaandfamily, can't say my bowel movements have been normal! Bit all over the place really, but as long as I'm not sick and drinking lots of water I'm not that worried about it. 

Projectkylie, Wig shopping is easier than you think, I never thought I would find one that I liked but I ended up with the second one I tried. I was adamant that I wanted a two tone/highlighted one but slightly darker than my usual bleached blond look that I've had for years. I thought it best to go more on the natural looking side so it didn't stand out. The parting and hair line are made of a see through mesh and are so clever when on, it really looks like the hair is coming out of your scalp.

Love to all Buttercup01 xx 

[rosie112]

Hi, I tried loads on and went for a lighter colour than I thought I would. Took two honest friends with me to help me. Picked a shoulder length straight one in the colour mocha chino and it's lovely. Think it will get its first outing probably Monday. I went to Andrew Collinge in Liverpool and Jordan the young girl there was lovely. Hope you get sorted. Love Suzanne xxxxx

[Donnaandfamily]

Evening all............. I too suffered the  burning in throat and chest and was prescribed omeprazole........ worked overnight..............had day of bright yello stools (sorry graphic) Mac nurse said to keep an eye on incase of infection...luckily brown today......... my poo seems to be all over the place.....fsoft one day loose the next........ anyone else suffer the same? I eat lots of fibre and drink plenty.....

[ProjectKylie]

Wig shopping Monday , any advise would be appreciated. X

[rosie112]

Hi Roseberry, I had stomach cramps and put it down to the chemo. My hair is coming out day 17 and I keep finding bits wafting off everywhere. Love to all Suzanne. Xxxxx

[Eitaki]

hi ladies. For those people who have mentioned annabanada for headscarfs...ive ordered a ton of bandanas from there and can recommend them highly.

Well I had to go see my breast surgeon today, turns out i have breast lymphoedema but its also looking like i have some infection going on there too (boob is red and hot). I feel normal and not ill, so this is a bit of a surprise. I have been put on antibiotics for 7 days. No idea if this means my chemo will be delayed next tuesday. Hope not 😞 took long enough to get the green light to start it. 

[missy12]

Hi ladies I had bold patches so had my.heaf shaved on.tuesday, like everyone else it was falling all over the place. Had second fec yesterday have been sick.in.the night.even though have been taking.anti sickness tablets

[Ali24]

Due to have first dose of FEC this morning but woke up with a slight headache and a bit of a blocked nose. Not sure if it will go ahead now. Just want to get started on this. What a rollercoaster. Has anyone been similar?

[ProjectKylie]

I've been quiet due to no hair loss except for an autumn lady garden and been feeling for you all losing hair already, it's my turn, just noticed my first threads of ginger curls shed. 😞 Inevitable I know. FEC1 with cold cap was 17 days ago, FEC2 Tues 1st April. Other SE, nausea, eliminated with meds, rough gums, exhaustion, brain fuss, feeling lucky really. What will be will be xx

[Roseberry]

Hello all, hope I am not speaking too soon but apart from nausea last night I have felt ok today after having 2nd FEC yesterday. Just wanted to pass on positive feedback to those of you due your 2nd chemo. I know we are all reacting differently, but so far so good. I have also taken Lansoprazole today ( prescribed by chemo nurse) to help with burning in throat and chest and I have had no symptoms today.
DH, I am sorry you are losing your hair. With regard to your question, i am losing my hair and I plan to shave hair as soon as my scalp shows.I agree with buttercup01, Eitaki and all the other ladies who have already shaved their hair that it is better to just get rid one scalp is showing.
Good luck tomorrow Buttercup01, hope you have better experience 2nd time round.

[Stelwah]

Thanks for the PICC line updates ladies. They've been fine giving me Tax through vein each time, but said FEC can leave veins hardened or cause damage so insisting on a line for that. Had wondered if the thought of it would be worse than the reality, so sounds like that may be the case. Will try not to worry about it for now.

Have worn my wig three times now, and three of my increasing selection of bandanas. I ended up taking scissors to the back section of my hair as the moulting was doing my head in. Have some longer but very thin sections of hair on the top - picture that 80s 'happiness is a cigar called Hamlet' ad with the guy with the bad comb over in the photo booth! Had intended to shave it off, but head feels a bit sore and thought even having a bit of hair would make the wig feel more comfortable. No longer upset about it as so much has gone, think it actually coming out and filling the bath plug is the most upsetting so really feel for you ladies that are at this stage. Made me feel better having some bandanas, a hat and wig to match with my outfits, and been making an effort to do my nails etc to still have a bit of glam. Love idea of having a facial, will def treat myself to this - top tip!

[Buttercup01]

Evening All, 

Just thought I'd check in before I take my first Lorazepam to chill me out ready for tomorrows 2nd dose of FEC. Feeling extremely apprenhensive, especially as my meds have been changed to try and eliviate the anxiety I felt last time. 

Went for a facial today (a treat from the bestie), it was amazing! Does anyone know if I can have body massages? The spa were a bit concerned as it increases blood flow etc...

Dh, feeling for you with the hair loss, I shaved the remains of mine yesterday, I couldn't handle it all falling out anymore. Felt much better after (although it does show up the patches more) and gave the house a good hoover through. Cleaning is good for the soul I say!

Looking forward to the head scarves arriving which I ordered from Annabandana (recommended by a fellow March lady). 

I'll post again in a couple of days, let you all know how I get on with Round 2. Love to you all xxx

[Mel51]

Thanks for that Suzanne. I think it's the right choice as they can't use my other arm due to SNB a month ago. I think that it should be worth it. The only thing that concerned me was the risk of clotting and the cleaning of it as they want my OH to do it! It gives me greater freedom not having to wait for a District Nurse every week, but it worries me if something is wrong with it. I guess it's just another challenge I'll have to overcome.

[rosie112]

Hi Mel51, I had a picc line in the week before my first chemo(12th March) lots of ladies at The Marina Dalglish, Aintree said is was the best thing so your veins don't harden or collapse. I am due my next FEC next Wednesday and even though it looks a bit scary it is brilliant because you cannot feel the stuff going through your veins. I think it's the best way without loads of needles and casuals that hurt. Good luck Suzanne xxxxxx

[Debs-]

Hello Everybody,thank you for all your replies,i am feeling more human today thankfully. Its day 6 after fec. I tried the water but felt so sick it was hard to keep drinking.so does drinking lots reduce sickness ??? I have lost 7lbs in 6days !! I was given amend for first fec cause i suffererd with bad morning sickness when pregnant but still was feeling bad on it. The nurses did tell me it was rare to have amend on your first fec. Concerning fec,i was told fec-t was worse than fec!! Id be happier to hear that im having the worst now.I also have to start herceptin half way through chemo too. How are you all today? Soz got chemo brain so have not addressed you all by ya names. Am glad i was not the only one with head and neck pains,thats good to know cause i thought it would turn into an emergency at one time. I had bout of D&S one evening both ends at same time,soz to be crude but comparing notes and all that. Lol Love to all x

[Eitaki]

Dh im the same, handfuls coming out. Bald patches appearing. Totally had enough by yesterday. My sister is coming to shave mine off at 4pm today 😞 really is sad.

[dh]

Sad day. Literally handfuls of hair coming out. Part of me wants to keep it as long as I can but on the other hand I can't stand my clothes being covered, everywhere in the house is covered, my babies are covered, it's in my food. Should I just get rid of it?? What is everyone else going to do? Hugs to you all xxx

[Elsieoc]

I have a picc line which was put in the day before I started my chemo. The thought of having it done was worse than the actual process. I had 2 nurses as one was in training. They were both lovely and talked me through each step.

You can't feel the line once it's inside you. It did feel a bit uncomfortable on my arm to start with but after a while you get used to it. The nurse comes once a week to clean and flush it through which doesn't take long and is no bother. It's a bit unsightly but I just make sure I wear clothes which cover it. Showering is a bit awkward because you musn't get it wet but they give you a cuff to wear over it.

Lorna x

[Mel51]

Hi ladies. I have to agree with all of you who are singing the praises of water. I followed this advice and think it really does help flush the drugs through your body and have tried to keep this up every day - although I always need the loo which is a downside!!
How long the chemo takes can really depend on your mess and also if you are using the cool cap. I use the Paxman cool cap and find it bearable, but does dramatically extend my time in hospital. I have to keep the cap on for 2 hours after the chemo!! Brrrrrrrr!! Well, let's hope it works.
I'd be interested to hear what people think about PICC lines as I'm having one fitted on Wednesday.
Keep it up ladies - we can do this!!

[Roseberry]

Hi all, debs and pansy 50 hope you are starting to feel better. I had 2nd FEC this afternoon, all went well. I used cold cap again and it was cold but bearable. I am feeling nauseous now and have burning in my throat and chest. I have been given an even bigger bag of drugs to help with side effects this time.
Ali24, I have been given emend tablets to take before my next (3rd) FEC cycle. I was advised to phone my nurse before 2nd chemo to discuss side effects of 1st cyle so she could prescribe additional drugs if necessary hence the bigger bag today.
Reading through the posts, it's interesting to see how differently we have been prescribed drugs and how different our treatment plan is. I had my blood test yesterday, chemo today and i have one blood count injection tomorrow.
Stelwah, pleased to hear you are not having any sickness, hopefully you will be ok with FEC too.
2 down and 4 to go, we will soon be through this! Hang in there everyone and best wishes.

[Stelwah]

Hi ladies. Great to read your anti-sickness tips. Had no sickness at all so far on Docetaxel, I have one more round of that before moving on to FEC. Nurse said FEC is toughest for side effects, so try and take heart that you're having the tough one first and getting it out of the way. Had my second round of Tax today, had to wait 2 hours for a chair to become free so lots of hanging around.

Can I ask if anyone has had a PICC line put in - how was it being put in, and how are you finding it day to day (eg flushing it, keeping it dry in the shower etc)? Been told I'll have to have one before starting on FEC, not looking forward to it at all.

[Donnaandfamily]

Hi Ali

I asked the breast nurse before I started how quickly would I start to feel unwell......she said your journey is yours and everyone is different....with some people not feeling unwell........... I kept that thought....drank 2 lltres of water the day before.....on the day and the second.day....actually I contimulaly try to hit the 2 litre level daily..............folliwng the advice of these lovely ladies who went before me........good luck x

[Ali24]

Thanks Donnaandfamily. Hope I will be the same as you. Wish I could have been given Emend too but will see how it goes. I see from other comments it's about 3 hours after chemo when you can start feeling unwell, so oncology unit will still be on call.

[Donnaandfamily]

Hi Ali

when I went last week for my first cycle .....I arrived at 9am......they gave me emend and steroids 1 hour prior to administering the chemo...at 10am.......I left the unit by 11:30........so hopefully your time frame should be the same...........

[Ali24]

Debs sorry you're still not feeling good.
I went for my bloods etc today and due to start FEC on Friday. I asked for Emend but was told I wouldn't get this unless sickness uncontrollable on meds they give me. Let's hope it's not as bad as I think.
Will give drinking plenty of water a go.
Can anyone tell me how long it takes to have the chemo? I was told about 30 or 45 mins today. Thought it would be much longer.

[Nikki49]

Hi all, forgive me for gate crashing, I'm from Sept 2013 and had my last dose of fec-t on Christmas Eve.
With fec I and many of the girls from the September thread found drinking copious amount of water the day before, the day of and the day after chemo helped tremendously sounds too simple but it honestly worked, I tried to drink 2/3 litres a day, I drank from a litre sized sports bottle and just kept sipping it all day.

[rosie112]

Hi all, just been for my 50mls in boob and noticed my hair coming out, not lots but more than normal. I am day 15 after FEC. Feel sad even though I knew it was going to happen. I know I will probably have a good cry tomorrow when it comes out more. Love to all and stay strong love Suzanne xxxxxxx hope your sickness goes quickly. Xxxxx