Starting Chemo in February 2014?

[rustywoof]

hi there, I did add you anyway send in my info to you just now...Well had my first dinner of pasta tonight thankyou M&S. I spend most of the day watching videos in bed, went to the shops top of the road but in this crazy rain and wind not really bothered about going any further. Hoping all doing even better tom.

Rusty x

[Hazelb27]

Hi everyone. I've been lurking for a wee while now but felt it was time to post. Got diagnosed on 20th jan and had first FEC-T chemo yesterday. It went fine and I was calmer than I expected. I was sick a few times this morning but a phone call to the BCN sorted me out with new meds and felt great ever since. Not too tired but think that will come. Just enjoying feeling normal when I can!

Sorry we are all here but happy that such a lovely bunch of ladies are here to support each other.

Much love to all you brave ladies.

Hazel x

[Rowan44]

I have sent messages to Rustywoof , lisac and Rose65 about the facebook group

need you to send me a message back here with details so that I can add you to the group  dont feel obliged tho  we are very friendly no one has bitten anyone yet 🙂

[Rowan44]

yes they vary greatly my FEC was in different syringes and the nurse sat with me the whole time I had a saline drip going and then she pushed in each syringe  over about 10-15  mins  I was there for an hour and a half actual treatment I think , felt fine when I got home just a bit headachey..

the days since have flown I cant believe that this time next week I will be on my second course , going to be a busy week , am in on the Tuesday having a Hickman line inserted as my veins truly are shockingly thin and thready and blow easily !  so they recommended I have this before my next treatment and it will stay in till I have finished the chemo

I feel great this week apart from really itchy when I get warm at night

hair seems to be shedding a bit more than normal but no major hair loss yet ... going to get a short haircut tomorrow girly day with my daughter 🙂

Rowan44

[Jaffacakes]

Hi Rose, I'm doing FEC-T. One week on from the first and I'm enjoying feeling a bit more like a human being! I think times taken by different chemo units can be hugely different. I got to the unit before 9, when they opened, and left around 12. They were very efficient at switching to the next lot of drugs each time one finished - those waits could have built up. I was then fine for about 6 hours and then suddenly very much not fine, but it's clear that mine was one of the more severe reactions! Feel great now, though.

[Mariecay]

Rowan, your weeks have flown by! 😕 x

[Mariecay]

Hi rose, which chemo regime is it your having? I'm having TAC and mine was 3.5hrs x

[Rowan44]

Hello Rose , welcome to the thread and sorry that you have found yourself in this situation but we are all here to support each other along , I have sent you a message on here about the facebook group
will add you when you send me the information 🙂
what type of chemo are you having do you know ? , my second course is due next fri the 21st .. assuming my bloods are ok
I am not doing the cold cap either .. too frosty brrrr ! don't like being cold
Gill Aka Rowan44

[Rose65]

Hi ,
Finally got my date to start Chemo on the 26th Feb...would like to join the February group and FB page..
Not doing cold cap...first session will be 3 hrs.?

[Rowan44]

LOL Rusty watch the winter olympics !! mm men in tights !

sent you a pm about facebook group and also tried to invite you by email 🙂 - click on the messages icon top right on here 🙂

Rowan44 x

[rustywoof]

Hi feeling better this afternoon I popped on the anti sickness bracets at 12 and been ok. Oncall doc said to eat something small before next dose so had a dry roll and kept the meds down from 2....so fingers crossed!!!!

will have a small bite of pasta tonight and have set my alarm to take my next set of meds......Phew!

Just noticed there's nothing but cooking shows on in the afternoon I usually love them but not when your feeling quezzy....;0(

Thanks for making me smile and laugh today guys

Rusty xx

[Jaffacakes]

Hi rusty, so sorry you're not feeling well. I kept on being sick on taking anti sickness pills as well, and had to contact my GP for extra supplies. Or your chemo unit ought to be able to give you extra. It will get better, but I was badly hit for a couple of days.

[Jaffacakes]

So glad you're home, Lowfatlovatt, and I laughed so much at your post, so thanks for cheering us up! Bit of a worry that they could get the dose so wrong, though... And yeah, we also had an interesting time with the washing but at least the house has never been spotless, so no point me worrying about that....

[Rowan44]

Yay welcome home Lowfatlovatt, sorry to hear you have had a rough ride , made me laugh about the doctors tho  , hope you continue to feel better and also to make us laugh !

and thanks for popping by heyjude5891 its nice to hear from folks further along the line , now I have had the first FEC out of the way I have been wondering what the T part of the treatment would be like and you have answered here  for me !!

my next course is looming ... scheduled for the 21st of Feb , having a hickman line inserted next tuesday ... so next week does not look fun !

Rowan44

[Rowan44]

The Facebook group is now set to secret so you wont be able to find it in a search , this is so our posts dont show on the news feed apart from to other members of the group

if you want to join just send me a message here with your name and what your profile pic looks like I will send you a friend request and when you accept I can add you to the group

or you can give me your facebook email and I will invite by email

Rowan44

[Mariecay]

Hi rusty...the headache is a bit of a bummer! Hope you manage to get the sickness sorted, there's nothing worse. Did you sent Rowan a private message with your Facebook details? X

[Mariecay]

Lol lowfatlovatt your posts do make me smile. So glad your home and doing ok. Good luck with the shirts lol x

[heyjude5891]

Hi All

I'm a November Newbie and just wanted to nip in and provide some encouragement if you'll let me?! I started FECT on 20th Nov, and I remember feeling that the end was so far away... I just had dose 5/6 yesterday,  and have my last treatment in less than 3 weeks. It really hasn't dragged in as much as I thought it would. I generally feel a bit rubbish for a week after treatment - no tastebuds, tired and a bit teary the day after my steroids finish, but generally the last 2 weeks are fine. Listen to your body, rest when needed but make the most of it on the good days! I did have bad bone and joint pain after the first T but more prepared this time with stronger painkillers. The fatigue is cumulative but ok most days.

For those of you toying with the cold cap, I'd recommend giving it a go. 5 treatments in and I still have a pretty decent covering. Baldish spot behind left ear from 1st treatment where the chin strap wasn't tight enough but its covered, apart from that I've just been shedding evenly. I wear a hat when I go out as thinnish on top, havent worn my wig much at all and just use a hairband in the house. Theres a great product called Nanogen which helps disguise any thin patches. My hospital has the Dignicap system which is apparently more tolerable as it cools down on your head. I struggled with the cold on 4th treatment,  but persevered on 5th yesterday and it was fine - just put more layers on and gat hot water bottles. The most annoying bit us the shedding... you will shed even with a good result, and the hairs in your comb and shower plug can be annoying, but I've always been surprised how much has remained, and I had fine hair before. Also washing once a week and not being able to heat style it is annoying, but a small price to pay if it works, and I'd say mine has been succesful so far, reckon I still gave 60% of my hair. There are also great semi-perm hair integration systems you can look into to thicken up the hair once finished. I'm going for a system by HairSolved as I get married in June.  You can even have this done during treatment if your not cold capping, they secure with tape as the hair falls out, the can remove tape as the hair grows back in after treament. It's not cheap but will be worth it to some.

Anyway, enough rambling from me, it'll be over before you know it!!

Jx

[lowfatlovatt]

Hey up me ducks
Finally come home from hospital yesterday 😊 temperature went up on saturday, when I checked it it was 38.5 and id got pains in my chest and back, when andy got me the hospital I was barely conscious, was later told my temperature had gone up to almost 40 and id got a severe chest infection (they feared pneumonia) so it was intensive care for 2 days and isolation being pumped full of antibiotics till I got to come home yesterday.
Hated every second of it, the doctors at 1 point where stood at the bottom of my bed talking about me as if I wasnt even there, talking about how the dose of fec I had been given was far too much for my size, 'because of her size' 'because shes only little' 'because shes so small' was all I kept hearing until I snapped and told 1 of them to get his tackle out so I could comment on his size (I often speak before I think, my mouth works faster than my brain), at which point they shut up and looked at andy who just said mate dont expect me argue with her im married to her I never win 😉
Still got antibiotics to take at home but at least im home with my babies, just need get the house back to spotless now and the kids school shirts back to white from pink (andys explanation-the washer is not his friend)
Hope youre all doing ok and looking after yourselves
Love and hugs
Hayley
Xxx

[rustywoof]

Hi ladies

Yesterday 1st chemo I was ok I woke up this moring to my glands inlarged, so called the hotline they said not to worry then the sickness kicked in every time I take a tablet within the 40mins its up. The steriods too. so calling this afternoon cause they only gave me a certain amount of those.....GOnna take a shower and dress but yes major headache too....Hoping this is just an adjustment day.....

Ruth

On the facebook note I couldnt locate it either? any ideas what i need to do?

[Jaffacakes]

One week after my first FEC and I'm feeling much more like myself. Not feeling sick. eating reasonably normally - although the odd stomach pang - and able to see friends again. All a great relief. Being a bit strict with the kids over hand washing and hygiene - the eldest has a cold and I dread catching it, as I know this week is the period for most reduced immunity. If it would only stop raining, it would all be great!

[Rowan44]

Well done Rustywoof , I sent you a pm about the facebook group the setting is set to secret so noone can see posts apart from other group members

rest up and drink plenty ,

Rowan xx

[rustywoof]

Hi One down now, feeling ok actually mouth a little weird but so far ok. I tried the cold cap too I was shocked I managed it but we'll see what happens. I will check out the facebook forum tomorrow. sleep well all
Rusty x

[Mariecay]

Hi rusty and Lisa....deffo echo what everyone has said about the Facebook page, you will find it invaluable x

[pinkrunner]

Rusty

I see Rowan44 and Mariecay have already mentioned the FB forum ! My head's a bit spaced out ! Lol !

Seriously this has been a godsend for me personally and I know the other girls feel the same.  xxx

[pinkrunner]

Hi Rustywoof

Thanks for your kind message - I have only just seen it.  I have just got home having had my first cycle and feel a little spaced out but ok'ish at the moment.  I have plenty of anti-emetics to hand !  Hope all went well with you - let me know.  We have started a private Facebook forum for us ladies starting Chemo in February - if you wish to join you are very welcome - it's called BCC Valentines 2014.  You can either search for it and send a request or if you private message me with your details - I can add you.  You would be very welcome.

Take care Rusty xxx

[Rowan44]

Hi lisac welcome and sorry you are here if you send me a private message here with either your real name and details of your Facebook profile pic or your user email for Facebook I will friend you and add or invite to group by email
As regards telling people about visiting just be open and honest and stress that your immunity will be low and sniffles could be very bad they will understand xx

[Jaffacakes]

Good luck tomorrow, Rusty. I've bought an electric toothbrush as well as mouthwash and my teeth are cleaner than they have been for years! I might try the anti sickness bands myself, as I am clearly the nauseous type. Don't forget that after tomorrow you will be one down, which is GREAT.

[Jaffacakes]

Hi Lisa, I started FEC on the 6th, so just a little ahead of you. One down and five to go! It's not a fun business, but I am glad now to be able to get on with it. Lots of info on the thread about joining the Facebook group, but your best bet might be to send a message direct to Rowan, who can invite you direct. On the visit thing, I'm just trying to be clear and direct about it. I'm happy to see people, but not if they are even a tiny bit ill. Most people get it - and you and your health are the only priority at the moment, so you're allowed to make the demand.

[Jaffacakes]

Hi Meiyou, welcome to the forum. I've now had two operations and have just started chemotherapy (3 FEC and 3 Tax) and I completely agree that it's a relief to be away from the grim waiting for results. All my news got worse and worse at every hospital visit, but now at least I can focus on the treatment. I will also have radiotherapy after all this. I'm glad you've got a good hospital and are confident in the treatment. And I've also found that there is quite a variation in the detail of the NHS treatment (particularly in support medications such as anti sickness).

[lisac]

Hi all,

newbe here, start fec on 24th and am glad of this forum and thread. Very worried but at the same time feeling better for reading others posts as it is sort of preparing me. How do I go about joining the Facebook group? Also, this is a bit of a strange one but how do you go about telling people you are not up for a visit? My surgeon, oncologist and BC nurse have emphasised how dangerous it can be catching any bugs etc..

Hope all are feeling better x Lisa 

[rustywoof]

Hi pinkrunner
I start tomorrow too, and feel like you too. I kept busy today, after reading lots of posts I bought a tun of stuff from boots from mouthwash to gaviscom even a motion sickness bracelet! dont ask! all the best tomorrow I know I cant sleep tonight....
rusty x

[Rowan44]

I have gone off coffee but am drinking and eating pretty much as normal , the heartburn has settled now too and my mouth seems to be improving with regular use of the biotene toothpaste - its available on prescription so I asked my gp for it

only symptoms I have now is a bit of  gripey stomach  pains  definitely no constipation I am going more often at present ! and tiredness which just hits me I can be up and  motoring one minute and the next I just want to crawl into bed and sleep

just realised that my next dose is now next week .... ulp ! got to have hickman line next tuesday as well as my veins were shockingly bad

Rowan x

[Mariecay]

I echo that jaffacakes! It's mental how it changes your taste buds! I'm a coffee drinker but can't stand the stuff, I'm now drinking black tea with a bit of sugar!!!! I stocked up on all my favourite foods but just don't fancy them. You've just gotta take each day as it comes and enjoy what you can on that day x

[Jaffacakes]

Hi Rusty, welcome, but sorry that you find yourself here. Well done on the haircut; I'm a bit behind with that and need to get mine cut off this week. I started FEC-T on 6 February. Not a great reaction (I tend to suffer from nausea and was quite sick and didn't get out of bed for 2-3 days), but now on day 5 I feel reasonably ok. I'm still taking it very quiet, though, and I would say it's helpful to have no expectations of yourself - just allow yourself to take it as easy as you need. And as to treats... What I fancy eating changes day by day and bears no resemblance to anything I would have expected, so it's hard to plan. My big disappointment is that I can't drink tea right now!

[Mariecay]

Hi rusty, so sorry you have found yourself here, but please believe me when I say this forum and the Facebook group will be a godsend during your treatment. I'm day 5 of TAC which has in honesty been very tough, but feeling much better today. Insist on the sickness meds, I was one of those that had to go back and ask and I don't typically suffer from sickness. I've also had mouth issues, mainly thrush which has made everything creamy so not been able to drink much fluid, but again that is getting better today. I've been using corsodol.
It's a very scarey time but like I said, this forum and the Facebook group just seems to make it a little less scarey.
Marie x

[meiyou]

Hi all,

I'm starting my Chemo AC next tues or thurs, waiting to have that confirmed. So far I've had a lumpectomy followed by a PET scan and sentinal node biopsy. So far all the pathology reults look positive, I have primary invasive breast cancer, with only 1 sentinal node involved . I'm waiting for the FISH test results to determin if I will need herceptin or not. I'll have 4 cycles of AC and then 4 cycles of paclitaxel, followed by radiotherapy.

Right now I feel pretty good, I think because the first few weeks after being diagnosed and waiting to hear the results were so appalling, I feel I'm able to cope with what is to come. I'm sure there will be lots of ups and downs to though.

I'm currently living in Beijing, so don't have all the same sorts of NHS support structure, though I'm sure that varies from county to county anyway. So I will very much appreciate any top tips or advice you all have to share. 

This website site has just been my lifeline. Although I'm in a very good hospital here and the procedures and medications are very similar if not the same as the UK, the language can be a bit of a barrier occasionally.

Good luck everyone with your treatments and i hope the side effects aren't too bad for you all.

[Rowan44]

Hello Rustywoof

sorry you are in this situation with all the rest of us but glad you are here , we are all here to help and support

I had my first FEC-T on 31st of Jan so am now 11 days down the line , I remember being same as you worried weepy and tearful , the reality for me at least wasn't too bad , I prepared by shopping and getting in foods that I like and easy to prepare treats and a few luxuries that I normally deny myself

my friend went with me to the appointment and this made it bearable .

I had bad morning sickness in pregnancy but no vomiting with anaesthetics .. Apparently this has a bearing on how sick you feel with the treatment I told the oncologist this when we discussed treatment so I was prescribed an antisickness drug called Ondansetron  they gave it in the drip before the other drugs  at the chemo and then I was given tablets to take home one twice daily and also domperidone to add in if needed and injectable metclopromide I wasn't sick but felt a bit queasy , others on here weren't given the ondansetron straight away and seem to have been having worse effects so if you are a sicky person I would recommend asking for it

day one I felt brilliant because of the steroids but wasn't sleeping had a mild headache and funny burning tingling sensations throughout body

fatigue is the worse side effect for me I tire easily but it took a few days to get my sleep pattern back

also oral thrush and sore mouth 

I hope this helps , it really hasn't been as bad as I feared the night before but everyone is different

if you read through the thread you can see our posts , we also have started a facebook group if you would like to join just send me a private message on here and we will add you on there too 🙂

Rowan44

[rustywoof]

Hello All

Im new, I found out today I start my fec-t treatment on wednesday 12the Feb. I knew it was coming thought I was ready but dont know if you ever can be ready...getting very anxious and weepy this afternoon so went straight to hairdresser and had my hair cut from a bob to a level 2 with a quiff!!! So I now know the shape of my head im hoping the next cut or shave wont be too much of a shock!!

Im all over the place like what should I do tomorrow how to prepare????All I can say is Im glad I found a site where we are all going through this at the same time and keep each other positive. I read a thread saying "Bring it on" so mine is "lets get it started"

Rusty

[Jaffacakes]

Lowfatlovatt, just wondering how you are doing? Bit worried to hear you we're in hospital and hoping that you're out and ok now.

[Jaffacakes]

I think you're a day behind me, MarieCay, so you're doing better than I was this time yesterday and this evening I feel soooo much better. I'm still a bit demanding on the food front- mostly white food, cant be good for me - but at least I'm eating something. I'm taking note of those who say its easy to overdo the next few days, though. Just need to be in shape for Tuesday wig shopping....

[Rowan44]

course 1 of FEC day 10

better afternoon had a sleep at 4-5 pm  but still having heartburn so sent partner out to get some gaviscon  no worries over constipation I am a little on the loose side and getting a few gripe  type pains , took some buscopan which seems to have helped , cos I feel so good most of the time I want to do things but I tire quickly 

hard to hit that happy medium of being as normal as possible but also listening to body and resting when I can  typical me lol always impatient

[Mariecay]

I've just in the last hour managed to start drinking and even ate a little! Hope this is the start of picking up a bit! X

[Jonsi79]

AC Cycle 1 Day 4
Sorry to hear some of you ladies are not too good today!! Apart from a metaly taste in my mouth, i'm doing ok. Slept heavily from 12-4 and then from 5ish until 10.15!!!! Taking plenty of rest and watching olympics!!
Its bound to come and hit me like a brickwall soon!!!!
Big hugs xxx

[MonicaB]

Hi

I'm just popping in from the October Optimists to send you my best wishes for your chemo cycles.
I know that you will help each other along, and we're also here (from earlier months) if you have any questions or if you're just looking for support.

Mariecay, sorry to hear you're feeling so awful - do you still have the shivers? You probably have already, but always worth taking your temperature and call the chemo helpline if your temperature is too high or too low. They can advise. Hope this passes soon.

Take care ladies xx

[Mariecay]

Hope your tummy settles soon Rowan, get plenty of rest today x

[Mariecay]

I feel lousy today, still feel sick despite extra meds, can't stomach food or liquid, I ache everywhere and my head is banging! I keep getting the shivers which is really odd! Very tearful today too! Anyone else experience this? X

[Mariecay]

Awww lowfatlovatt what's happened? Hope your ok x

[Rowan44]

Aww lowfatlovatt sorry to hear that 😞 what's happening ? Hope you get better soon sending love and hugs x
Mariecay I hope the extra meds start to kick on soon x
Got a jippy stomach myself today and feel exhausted probably overdid it yesterday as I felt so good

[lowfatlovatt]

In crappy hospital xxx