Starting chemo in August 2012

[Luvvie66]

Hi ladies, I have emerged from my TC state..... It was very different to my FEC experience.
I had my new cocktail on Weds afternoon and felt relatively ok until Friday afternoon, when I felt a bit tired and achy. I thought I may have overdone things. Big plus though, I wasn't sick !!!!!!
By Saturday (our 22nd wedding anniversay) I was aching a lot plus vile taste in mouth, headache etc. And I couldn't stop bursting into tears........ but it seemed SO much more doable for me than FEC.
Then came Sunday:-( oh dear!!!!!! Every bone in my body ached.... Knees, legs, fingers, teeth!!! It was awful.
Then Monday the aching had started to subside and today I feel almost back to normal!!! I even attended my Look Good Feel Better workshop today (which I almost cancelled yesterday because I felt so rough). Glad I didn't because it was fab!
So, really not nice, but better to ache than vomit I think.
Hope you are all keeping well, not suffering awful s/e and get yourself booked onto a LGFB workshop if yoa can.... Just the tonic I needed:-)

S xxxxx

[June22]

mandymid - I personally would say - explore every offer of help available to you and find what works for you.
I really did need someone to talk to that wasn't family of friend. This forum fitted that for me - just to read what others were going through which was similar to my experiences, and their advice answered a lot of my questions. But... I have also considered contacting one of the face to face groups, or using one of the phone lines too. When I feel I need to, I will reach out.
It is a lot to go through and there is no need to try and do it alone, especially as things hang on your mind that might be lifted with a simple word from a professional, or from someone who has already been through this.

And so I say, do what feels right for you, and don't feel you have to manage alone. We all feel the side effects differently, and we all cope with varying degrees and different attitudes. Make life as good as it can be by getting the support to help you through. There is no shame in making life better for you and those close to you by spreading the load.
All the best,
June 22

[June22]

my3girls - sorry you are having forum problems. The moderators helped me when my messages were not displaying. Maybe you could drop them an email at moderator@breastcancercare.org.uk

There is also a side menu on the left of the Forum with links near the top to helpful advice on using the site. You have probably already tried that, but maybe there is something there?

Good luck,
June22

[mandymid]

Hi I am now 4 days post second chemo (epirubicin) and today I feel a bit more like me. A similar pattern emerged, feeling rotton the first evening, so nauseaus then ok on the Tues, then pretty rotton for 2 days. Today I have managed to go out and about and meet friends, it helps so much but I just couldnt do it yesterday at all.
They catagorically told me that I wouldnt have periods on chemo (Hummm no typical me I do!)
My 3 children are now back in school so hope that maintains more of a normal life for them.
Has anyone spoken to a cancer support nurse and did it help (Mcmillan or similar) Im considering it but dont want to spend even more time dwelling on all of this but if it helps then I am willing to try. Not sure what they can say to make me feel much different if Im honest but starting to accept I cant maybe do this without some "help" other than from friends and family
Mandy x

[my3girls]

Hi girls, Trying to start a new topic and finding it impossible, can only reply to a previous one, any advice at all on how to is welcome, tried all sorts but nothing works, thanks Pam

[June22]

Mandyj - sorry to hear you are having a tougher time with your second dose. It does seem to happen that way sometimes, from what I have read through the forum. I haven't had a headache problem since the first few days, but I do feel a bit blocked around the sinuses, and I often have sinus issues anyway so I will keep a check on this for myself.
Perhaps you could try using a sterile saline nasal wash - do check with the nurses first to ensure it would be okay to do so. I used a nasal wash rather than sinus meds recently (before starting chemo) and it eased my sinus infection nicely. It opened up my airways and helped me breathe easier too.
I feel giddy and tired today, but still bright enough to smile at the world and consider myself fortunate. Thankfully some of my taste sense has returned so I was able to enjoy a sandwich for lunch! I'm not taking nausea tabs, just the ones to settle the tummy.
My nose continues to errupt in tiny painful pimples - as if I needed teenage acne too!
I still have my shoulder length hair - trying to hold on to it for the wedding I hope to attend on Saturday, but I have booked a meeting with the wig people for my NHS wig on the 18th. By then, I expect to be either bald, or close-clipped and ready for further loss.

My full admiration goes to all of you who are keeping up a near normal lifestyle whilst dealing with chemo. I don't have children to manage, and I am not going to work whilst undergoing chemo. I don't know how you are staying so strong with all that is being thrown your way - but I send you my best wishes for few side effects and lots of strength.

[Ellaboo]

Thanks Jax - thought the hair loss would be earlier but no sign now. Cutting it short was really odd after having long hair for so long, was quite liberating though! Have bought loads of lovely scarves and turbans. My children have been amazing, we were totally open with them right from the start. They're 10, 8 and 3. My mother in law had breast cancer (same as me, skin saving mastec, hormone driven - just shows how common it is, sadly...) last year so they were aware of the process. Love the idea that was posted earlier about having your children help to cut your hair back once it starts falling, my 10 year old daughter is definitely up for that! Have seen wig nurse but not sure will go with one, but may change mind. Have got immediately on the Look Good Feel Great waiting list on the advice of a friend - apparently they give the most amazing freebies and great advice!! Thanks for the ginger beer will try. Am now on day 9 of first FEC and feeling okay. Is wonderful to read everyone's stories and advice - loving the positive mental attitude, is invigorating. Cannot wait for 12 December (all going well) when it will be over! Thanks again for your advice, Lisa x

[jaxmackenzie]

Hi Ellaboo..............my hair literally fell out while washing it at the weekend, which was 5 days after my second FEC, so it is probably a bit early for yours to fall out yet. Cutting it short is definitely the best thing to do as it will be less traumatic when it goes, even so , it is strange when it starts shedding and you wake up with bits on your pillow in the morning. Make sure you get some scarves or wig ready for when it does go and book yourself in for an appointment @ the hospital if they have a "wig nurse" as it takes a while if you get one on the NHS. As for eyelashes a few fell out after the first chemo but I've still got them so you may be bald with eyelashes. If you get booked in the Look Good Feel Great sessions run by the hospital they advise you on make up if you lose eyelashes.
I 've got the dreaded chemo mouth and find ginger beer is one of the few drinks that taste ok
I've only got the one son to deal with so I can;t imagine how you're coping with 3 children but we have to keep going don't we:-)
Take care and minimal s/e to all

Jax
x

[Ellaboo]

Hi, was really happy to find this forum last night to be able to hear from others who are going through the same thing as me! Had a skin saving mastectomy and temporary implant with first level lymph removal end of July (micro found in sentinal which is why had to have first level clearance, luckily first level all clear, yay). Opted to have chemo as a sweep and am having six FEC which I started last Wednesday 29 August. Am 41 with three children and I still have to pinch myself to confirm that this is happening to me! Am having a PICC line put in for next time as veins are rubbish, but found I felt groggy for three days afterwards, when I was taking the anti sickness. Had a reaction on the Thursday morning when I woke up and found my face was bright red as if it were sunburnt and had a temp of 38 so had to go to A&E aagghhh what I nightmare, felt fine but they were amazing, took me in immediately, no waiting and checked my bloods which were all fine. This reaction is apparently an allergic reaction to the steroid which they line in first before the chemo. I am having the injections in my stomach from day 5 to 10 to boost my white cells which am doing at home (well, my husband is!) and they seem to be okay too. Have been feeling fine since Sunday aside from my mouth tasting vile and having to brush my teeth every five mins. Had long hair which I have had cut short in preparation but no sign yet, I think is too early. Am actually slightly more freaked by the thought of losing my eyelashes and not wearing mascara!! For anyone who has not yet had their surgery, was completely astonished at how brilliant it looks - when my treatment finishes, my surgeon is putting in a permanent implant and matching the other one (which, believe me, after three children they truly need haha!). Anyway, would love to hear from anyone at my stage and also any comments on how to deal with the dreaded hair loss... xx

[mandyj]

Hi
I am not bouncing back as quick second time around, which is disappointing. June22 I too find my scars a little tender and seem more red. Not sure why! I also seem to go a bit numb around my boob. I am wondering if this is more to do with my multiple sclerosis as my right leg goes numb and pathetic for a few days too! I seem to get a sinus type nauseating headache from day 6 onwards. It's just one thing after another!
Love and hugs to you all
mandyj.xx

[June22]

Hello ladies,
I am 5 days after my first FEC chemo, and feeling a bit brighter today. I haven't been sick, but have felt nausea and total exhaustion so that I was mostly useless around the house - other than as a sofa cushion! I trembled a lot too... and got pimples on my nose just to add insult to the flushed face! But today I feel a bit more cheerful and awake, so will try and do some simple chores.
I have noticed that the operation area of my lumpectomy and Lymph nodes is very tender. And the back of my neck and neck glands are also tender... but all manageable.

Keep drinking the fluids and hanging in there ladies... we can do this together. Thinking of you all and sending you good vibes.

[nik_nak]

Hi Luvvie, loving your last comment, same for me, but ended up with painted nails and bald...:-) you have got to keep the humour I say.
Girls just wanted to say thinking of you all today, good luck and let us know you are ok
big hugs xxxx

[Luvvie66]

Hi Victoria, good luck for tomorrow.... Emend is the wonder drug apparently. I had it first time round IV........ That's why the oncologist couldn't believe I was so sick... Apparently it's really rare anyone is sick on Emend! You will be fine:-)
Im having my new cocktail tomorrow... Still having Emend plus a host of other anti sickness, 2 of which I've started today.
Im hoping it will be ok too....... I'll be thinking of you and we'll catch up in a few days 🙂
Must dash, Nik Nak has convinced me to paint my finger nails .... Ugh. I'm not a painted finger nail type of gal... But then I wasn't a bald type of gal until recently, either

[TigersGirlie]

Hi All,

Hope your side effects have not been too bad, I've been put on emend for tomorrow hole not to be add bad add last time, my onc is lovely and put me straight on it, anyway dreading tomorrow, and how many more just think you will only have 4 to go that I can hear with out popping!! !

Hugs to all, prob won't post for few days still hope you all keep well

Victoria xxxx

[nik_nak]

Hi Luvvie66, good to hear from you. Yes this TC cocktail I agree isnt so common from what I have seen, re the fingernails, I was told that during chemo your nails (fingers and toes) become extra sensitive to the light, so I have had my nails painted since beginning of May and keep them painted even now as they arent too pretty. The chemo made them go very dark yellow/brown, so keeping them painted kept them hidden too, looked like I smoked 40 a day...and have never smoked in my life! I am not sure what happens if you dont paint them, but I have managed to keep all mine and so far the new growth is ridged, some fingers worse than others, so they are kept short and painted to get the new growth to come through asap. I kept nail varnish off for 2 days last week and in 24 hrs the nails started to go white and what seemed to be happening was that the nails were becoming a little detached from the beds...so the varnish went straight back on and they are still fully attached - so far so good. If you paint them, ensure its a dark colour - sounds funny but I used to paint them to go with my multiple scarves I wore on my head (and only ever used to paint my nails for weddings!)
Re the aching, yes I was warned and it did happen, I used ibuprofen when the aching got bad, but as soon I was able I tried to attend pilates class as the stretching in the class is low impact and worked wonders. The aching though was not constant, I would have a bad few days in first week after chemo, then next day wake up and the aching was gone. It would only come back if I over did it, doing too much or standing around. What did make a difference was the injections they gave me post chemo to boost the immune system - at first i had the daily jabs which were not good with the TC cocktail, but when I went to the 1 off jabs, this helped reduce the aching. As I am someone who cant stay still for long, I learnt if I was aching to rest and go with it, take pain releief and keep focused on the fact this is temporary and will pass. Apart from that some usual side effects on TC, sore mouth, weird cravings of carbs and sugar (quite common apparently), sleepless nights for first few days after chemo but gets better (try limiting how much you sleep in day) and what I class as chemo fog, for first few days head felt was in a weird cloud - but again this passed and constipation (tried to keep to a high fruit and fibre diet first few days after chemo, apricots worked well)
Oh I just thought of something else, after first TC I came out in spots on my face...lasted a week, I used epaderm cream (same i used for my scalp), this then passed and never happened again.
Blimey I sound like a real hypocondriac, seriously I am not 🙂 Good luck today, sending you a big hug, let me know how you get on.
xxxx

[Luvvie66]

Hi Nik Nak thank you for posting:-)
I'm having my first TC combo on Weds, having been taken off FEC due to my severe reaction to it. there don't seem to be many others on that particular combo.
My oncologist mentioned I might get ridges on my nails...... Is that what you mean when you say your nails aren't too happy? I'm half expecting them to all off! I don't like wearing nail varnish on my fingernails..... What is the benefit? Does it stop them falling off... If it does, I'm going to paint them up on Wednesday morning!
I was also warned I might ache, and to take paracetamol and codiene....... Are there any other SE I might 'enjoy' with my new cocktail??
I'm having a PICC line tomorrow, so am hoping that will make things a little easier too.
S xx

[nik_nak]

Hi Sootie961
Hope your day has been a good one, I noticed today that my bald patch was starting to grow back so it all comes back quicker than you realise...you wait wont be long 🙂 I noticed in your message you mentioned reflexology, look up Maggie's centres they are across UK and are a charity Cancer Support centre, thats where I went to the look good feel good session. If you have one near you they do, yoga, reflexology and lots of other relaxation groups at no cost. I did reflexology during all my chemotherapy, privately at home as I used to time it to get me through the rough patches during the chemo cycle and I swear by it, had never done it before but she was brilliant and she used to work on me and my body dependant on what was the ailment of the day.
Let me know if you have any luck with Maggie's..here is the web address so you can see if you have one near you http://www.maggiescentres.org/
xxxx

[sootie961]

Thank you Nik nak...taking a bit of getting used too but I will get there! I've looked into that Look Good, Feel Good seesions...I think I will book one now!!
Sika...I meant to ask...what chairty was the reflexology ladies associated with please? I would like to see if I can get anytihng like that local to myself!! xxxxx

[nik_nak]

Dear Sootie961, I feel for you dearly with losing your hair, I was always so proud of my hair, I cried for a whole day, ate alot of cakes and then the next day after reading up on here, decided to focus on other parts of me to distract from my lack of hair, earings, a little more makeup and ask at hospital if there is a Cancer support centre that does a feel good, look good session - I thought it wasnt for me but I went, it was great, met some lovely ladies, got lots of goodies and was taught properly how to apply makeup and make up for loss of hair etc.
You will get there, we all do, it makes us stronger...head up, keep positive and I bet you have a lovely smile, no-one will take that away from you.
sending you and the other lovely ladies on here a big hug
xxx

[June22]

My last post still hasn't appeared on the list. I'm still being moderated as a newbie so it might yet turn up!

I had my first FEC yesterday afternoon.
It was in a small outreach unit of the main oncology centre, so there were just 2 specialist nurses, and only me getting an infusion, with a few PICC flushing patients briefly visiting. This meant I had one-to-one care from a fantastic nurse who was spot-on with all the information I needed to receive, and sorted out the problems I have had with oncology appointment dates not being supplied... and has arranged for me to have a PICC line fitted before my next appointments. She said she couldn't understand why that hadn't already happened, as they can only use the one arm, and the chemicals aren't nice to the veins in the hand. That, and the fact my veins aren't easy to use!
She has also sorted out a referral to the wig dept so I will hear about that next week too.It was such a relief to feel confident that she was on the same page as me on getting things sorted.
The cannula went in well - she placed my hand in a bowl of warm water first to raise the vein. And she sat and watched with the infusions to ensure there was no swelling around the cannula as one of the chemicals can cause damage if it doesn't flow well. All went well... there was very little discomfort.
After a couple of hours, I was ready for home, felt a little odd and light headed, but the worst part was a stinking headache which is still with me. Didn't have a good night's sleep - probably due to the steroids. They did warn me that might happen. My body was tired but my mind wouldn't rest.
This morning I have a bright red face - as if I have a permanent hot-flush! My temperature is normal though.
I still feel a bit odd, like when you know you are coming down with something... I'm taking it easy and resting, but trying to potter on with jobs. I have a 2lt bottle of water to hand to try and drink my way through it as the day goes, and I am forcing myself to have small snack meals though I have no appetite.

So, day one after FEC 1 is managable. Just the rest of the three weeks to negotiate my way through... 🙂
All the best to all you ladies, and a return hug to Sika, because it sounds like you could use it.
(((((Sika Hug)))))

[sootie961]

Hi all......
Silka....I feel the same love, please dont worry about it. I tired to keep up with everyones post's and reply to them but I found it just impossible as my 'Chemo brain' just wouldn't keep up. I tried writing things down as I was typing but still got lost along away. I almost stopped posting as I felt I was not acknowleging individuals 'troubles' with this awful treatment we have to go thru...but I didn't. I'm sure we all understand and we all have so much going on we dont need any added pressure when we come to a place to just rant for a bit or write down how we are feeling and give each other comfort. If I see something I want to acknowledge I do, but please dont anyone be offeneded if I havn't mentioned you in my post...I'm sure you are not. I draw a lot of comfort from just reading I am not alone, and quite pround to be in the company of strong women...even if we dont feel like we are all the time.

I'm on day 5 of 2nd Fec....and oh what a crap day I had yesterday. The worst day I have expereienced so far. Never far from the toilet with crushing stomache pains. No sickness but some nausea. Tired beyond belief.....I really dont know where it came from because so far I've had it easy compared to some of you lovely ladies. I must admit it took the wind out my sails competely. I guess this is just...Chemo!!!
I did get better nights sleep last night, with the help of the sleeping tablets they gave and I'm hoping by the end of the 7 of them I wil have broken the 'no sleeping' patteren. I'm reluctant to eat today with fear of the tummy pains coming back...they were excruciating....and so far only managed a bit of toast.
My major wobble came this moring with the shaving off of my hair. It was time and I had only been putting off the inevitable......but boy oh boy did I cry!!! I feel so sad about it!! Crazy I know but I feel as if I have lost a part of me....I know it will come back but oh gawd I'm in mourning right now!! :'( I'm off again now just writting about it!!
I take my hat off to you ladies that have embraced your baldyness! Good on ya!!
Re the heartburn/indigestion...I can recommed Mallox, you buy it from the Chemist (not off the shelf) best stuff I have every used!
Luvvie66 thanks for the Beechfield Morf recomendation on Ebay...went and had a look and got a couple of plain ones.

Takecare and Stay strong ladies, I hope your side effects a minimal and remember we are all here for each other....luv in hugs xxxx ❤️
PS Nik Nak..thanks for all those tips and advice...xxx

[nik_nak]

Hello Ladies, just read through the posts above, I feel and understand all you are saying having gone through chemo the last few months myself, I had the TC cocktail and went through all the weird side effects you mention - the only side effect nearly 2 months on from my last dose I am left with is finernails that arent too happy, but are starting to grow healthy and my hair, but now starting to grow too. One of my chemo nurses told me to keep my finger and toe nails painted in dark colours as they are sensitive to light - she was right, has worked and looked very nice
Re stomach/nausea, I was on Omerprazole before my diagnosis and this helped through all my chemo to keep my stomach in check, I also found certain foods helped with nausea especially during my sleepless nights (especially the first week), apples, peanut butter, cheese..seemed to be the heavier the food the better.
Re mouth problems, the first week was horrid, so used mouth wash provided by chemo unit, but great bit of advice i was given was to remember to rinse your mouth out well after brushing them as the toothpaste dries the mouth out, sounds yuk but during the first week after chemo I stopped brushing my teeth before bedtime as it allieviated the mouth problems.
for my scalp and yes like alot of ladies on here the pain from my scalp was awful and, when i had mine shaved, there were alot of cuts. I used a cream called Epaderm (all ok'd by chemo unit), keep the scalp moist and helps ease the pain.
Dont be worried about not being able to concentrate or focus on anything, this comes back, I read my first book in months a couple of weeks ago...I was quite excited about it!
I kept as active as possible during my chemo, albeit it at times I was physically unable to do anything, when I had my good days I was determined to keep moving, walking, GP referral to the local Gym doing a little exercise, mentally works wonders and makes you feel human....and when I couldnt I slept/rested as what they say is righ...listen to your Body and dont feel guilty about it.
Good luck ladies, sending you all a hug and remember keep positive...we will get there xx

[TigersGirlie]

Hi Sika,
I was blank for about 5-6 days post fec 1, so don't be worried about the blank? And dont worry Re moaningwe all do it! I don't know how my partner put up with me, especially as like you I have the week of injections. And bless him he has to do it as an a useless patient(I'm a vet nurse) but can't injeCt myself, anyway every time inj me I swear at him cry have a minor breakdown then fall asleep lol, so it's not in your head!!because if you ask me the is not much in my head those first few days!

I hope you keep your temp down and not have another stay in hosp, I'm with you on smells my dog smells disgusting and never noticed it before lol he's had 4 baths since my first r treatment!

I think Milk of mag has gone, try gaviscon cool orask dr Dr for some omeprazole, will help with reflex, ask someone to make some chicken noodle soup you just add water add really smells strong.

Don't be lonely were always here, and in the virtual hugging

Big hugs

Victoria xxxx ps get that temp down lol xxxx

[Sika]

Hi everyone. I have been useless at posting here and I've made a mess by also posting in the July thread .. I don't know where I belong as I thought I would be an August person but they surprised me by beginning the poisoning inJuly! So I feel like an imposter in both threads. ... And then I can't keep up with everyone properly, especially doing this on a tablet - should go on my computer and do it all properly. It takes forever here and i cant see many of the posts when i type and it does loads of silly autocorrect things... Grr. Anyway, I am going to miss people in this reply, but I follow avidly!

Sarah, it's great you feel okay about the hair thing and your sexy new crop! Have fun at the party in your wig. I've ordered a buff too, on your recommendation. Gotta say I love how the colder weather makes hats more sensible ... I reckon I just look like a person in a beanie ... I hope your new treatment is much kinder to you.

Mandy, good to hear that dose 2 has been somewhat better for you, and I love how you are lookingforward ...

Victoria, I have also been wondering if I would end up with an Afro as Iunderstand that lots of people have curls grow back. I also had hair down my back. It was such a big part of me, and it seems so silly now that it was, why did I have such long hair? Especially as it was so hard to dry and manage and took so much time to sort out.

Welcome,LiZ! This site is a great support, its lovely to read and share and compare and commiserate, and be 'around' people who understand.

Angela, yay for no sickness! Ow with the veins though, and to secretsock. Our poor wee veins having to handle the poison. Others rave about the picc line so that might be good!

Jax and soots I hope you have had some better sleeps?

Sian, June, pat .. Hugs! And anyone I have missed! I will try post more regularly then I can reply properly.

Anyway, I am day 8 of fec2. I ended up in hospital for a week on day 10 of fec1, with neutropenic sepsis so this time I am having to give myself injections to boost my white blooD cells. I hate doing the injecting, though it doesn't hurt. My temp has been on the warm side today so I am crossing fingers I am fine. Still feel pretty rotten. Thenausea has been more ongoing for me this time - even though it was on emend and am taking the other pills more regularly. I keep getting associative nausea - even thinking about the syringes makes my stomach churn and I am dreading number 3. I am also really bothered by smells, normal smells smell different, horrible, too intense, too sicky. Terrible indigestion too with acidic painful burbs and I can't buy milk of magnesia anywhere! No appetite at all.

Today though has been my most 'okay' day. I simply can't function up to day 5/6 and don't know how others do. Even today, going to the supermarket completely wiped me out. But my mind is beginning to kind of work again. It is just completely empty and blank the first few days. There is nothing in it and I just sit, empty and blank. And sick and sore. I am hoping that I will be well enough to do some work soon. But some of you seem pretty functional after the first couple of days - what is wrong with me? Am I just making it up? my oncologist told me positive thinking can reduce side-effects, but I really don't believe that at all. But perhaps it is true and I feel like shite because I am being a whining moaning miserable thing and it is my own fault.

Bright side: a lovely woman came to my house today for reflexology therapy and it was really divine. She'd had bc herself and now does this for a local cancer charity. It was as nice to talk to her as it was having the treatment!

I think I am lonely, but it is my own fault becauSe my response to this whole thing is to tuck my head in my shell and not look out until after it is all over.

[Luvvie66]

Hi Ladies, Finally done the deed!!
Getting a bit fed up of my hair constantly shedding and it all came to a head (ha ha!) when I realised I could grab a handful and literally pull the whole lot out! Freaky!
Anyway, we shaved it as a family tonight......I'm now sporting a kind of crew cut, although I like to think its more trendy.... It's an inch all over and I cannot believe how dark my natural colour is after being blonde all my life and having highlights regularly for years!
I quite like the finished result. It's a bit clumpy, but short kind of suits me. Hubble says it makes me look years younger...... Mmm.
Goin to wear my wig to the party tomorrow and see if anyone realises.
I feel SO much better about this than I thought I would 🙂


Hi to Secretsock and Liz48...... Welcome to the August thread. Cannot believe its Sept tomorrow and were moving through this tunnel so quickly!
Sarah xxxx

[mandyj]

Hi Angela (Stiz)
Glad your bloods were ok. Hope your second day is going well. I wasn't as bad this time. Nausea kicked in when I got up raher than on the same night so that was better. Once meds were down my neck I was fine. Was always wobbly first thing with the first dose. Have felt ok today. Didn't sleep very well. Felt shatterd and couldn't keep my eyes open, but still found it hard to nod off. Damn those steroids! Will probably see you for the next dose. Look after yourself.
Secretsock - hope you are continuing to feel well today too. My hubby has now shaved off the patchy stubble and I have a head that feels like a babys bum!
Liz48 - welcome to the mad house! We will all help you through this surreal time in life. I started off feeling rather terrified really with my first dose and once I felt human again I was so much more positive about things. As soon as my 2nd dose went in yesterday I went back to that doom and gloom feeling for a little while, what with the fuzzy head, lack of sleep and a bit of nausea but I know each day will get easier and the time seems to be flying by so it will soon all be over (after the radiotherapy).
Look after yourselves
love mandyj.xx

[TigersGirlie]

Hi Liz,

Looks like you managed to post, were all at some stage during our chemo, well all help each other through, your daughters will miss you too.
We all have struggles but its best to rant on here we all understand what's happening, everyday is different!!
Mandy glad it made you laugh, she immediately bought me fifty shades as a joke when it came out lol. Any way hole your not to sick?
Angela I have a Hickman line and it was great!! Glad you not been sick, I would ask for the pic line,
Secret sock welcome, glad your lucky with no side effects, my hair is now falling out but had it shaved last week! I'm with you re hairloss, mine w as a halfway down my back and really curly ringlets, so I'm looking forward to what's coming back maybe I have a Ginger Afro? As my hair was Ginger

Anyway not looking forward to Wed, have a good weekens

Victoria xxxxxx

[Liz48]

hi bit late making my first post tried before first chemo on 2 .08 but couln`t get to grips with technology computer skills definitately not my thing . Now 8 days post second chemo session and starting to feel human again ! Have been reading older posts and are amazed how brave and positive you all sound trying to feel the same but must confess struggling at times . I had a lumpectomy on 5 july which found a grade 3 triple negative 1.8 cm lump with no lymph node involvement . I am due to 6 fec followed by 3 or 4 weeks of radiotherapy . Have been advised not to go to work until after chemo finished as working in health care as so would be exposed to infections finding being at home full time very odd not so bad as youngest daughter 17 off school and midde daughter 21 home for summer fom uni but dreading them going back .
hope i can get this to post kep your sprits up and good luck to all Liz x

[stiz]

Hi Mandyj,

Was nice to see you yesterday even under the circumstances. my neutrophils came back at 2.1 so they went ahead with it but like yourself with my 2nd fec it stang a little bit but it was not nice on the 3rd it is just the epirubism agravating your veins but my nurse said if I do have to have 3 more fecs to have a picc line put in as i won't be able to cope with anymore through that vein & it's actually black & blue today, I ended up having over 2 litres of saline because it took so long, we didn't leave until 2.30pm.
On a brigter note haven't felt sick at all just got the headache & was awake for a few hours in the night. Hope everything has been ok with you & your not suffering.

Love & (Hugs) Angela x

[mandyj]

Hi all
Had chemo number 2 this morning. Had a fuzzy head since. Waiting for the nausea to kick in and preparing for the rough night that I had last time. The epirubicibn is vile, made my veins hurt this time. Once that was through all felt fine. I hope the pattern follows the same as last time as I did rather well really. I hate this. I wish I was someone else right now, but knowing my luck they would have something worse!
Tigersgirlie - I laughed so much at your predictive text thing. My husband says he is going to use that one to make folks laugh.
Good luck to us all
mandyj.x

[secretsock]

Hi... I'm late to this August thread but that's because my first chemo session was just on Tuesday!
So here I am, 48-hours post-chemo and feeling... well, like a bit of a fraud, really! No side effects, other than a bit tired. Yesterday I was feeling kind of restless, so rang the chemo helpline number and the doctor said to halve one of the tablets that I have, and that has seemed to work.
My veins are rubbish (to quote the chemo nurse!) and the cannula hurt as the drugs were going in, so I'm getting a PICC line fitted just before my second chemo. Other than that, I'm waiting for my hair to go! I have really long hair... well, I had really long hair. My first chemo appointment was midday so very early on that day I went to the hairdresser to have it all chopped off. Really short. I've donated it to a charity that makes wigs for kids (www.littleprincess.org), thinking that I'd rather give it away than lose it. So I'm currently sporting a "bovver boy" crop and goodness me but it feels so liberating, I don't know why I didn't have my hair cut ages ago!
So good thoughts go out to all the other ladies out there currently getting zapped on chemo. I hope your side effects are as minimal as mine.
xx

[TigersGirlie]

HI Soots

OH no your not having a good experience re sleep, Ask the macmillan nirse for a relaxtion CD is really good and really helps me shut of before i go to sleep. I have been on sleeping tablets for years due to a awful knee injury, I can safely say that i have never vomited in my sleep.

Luvvie - how it is awful to count the days lol, anyway bet your now feeling quite good, in a chemo way like i am. Hope your hair holds out for your party, mine is going and sore unfortunately. Hope that your treatment doeasnt give you the vomit fest we enjoyed after our first treatments.
WIll be thinking of you next wed and thinking of everyone else whos due or starting.

Love and hugs

PS yeas very 50 shades have now read the series lol...

vxxx

[Luvvie66]

Hi Ladies....... How time flies, some of you are post round 2 already!!! Brilliant!!

Sorry to hear of your sleeping problems..... I was dreadful the first few days after chemo and didn't start to feel human until I could manage at least 5 hours.... It's so debilitating Hopefully the sleeping tablets will help.

Soots, I love Buffs too!! I've got a few in different colours and am planning to wear a contrasting one as a band around the main one..... Also got some really cheap chiffon scarves off Eay to "dress them up" for goIng out. I found something on EBay called a "Beechfield Morf" which is the same as a Buff but is only £3.49 incl p&p...... Hence why I can afford so many colours! I am really pleased with them

I have Ben worried that, because I was SO sick after my FEC that I'd vomited all the poison out of my system. My hair showed no signs of going anywhere. But on Sunday a few strands came out when I ran my fingers through it and I completely freaked!! I don't know why, it wasn't as if I wasn't expecting it!!

Anyway, apart from my crown being really sore (I can relate to your comments about that) nothing much more is happening at the moment. I'm really hoping I can hang onto it, or resist shaving it until Saturday when we are gong to a party. I've really really thick hair so I'm hoping it'll take ages to shed at this rate.

Im due round 2 next Wednesday, same as TigersGirlies... But I'm having my new combo which hopefully won't make me sick! I'm not looking forward to the Docetaxal element of it..... But it's got to be better than another "vomit fest"

Ps... Love the predictive text blunder.... Too much 50 shades me thinks!!

[jaxmackenzie]

Hi August Ladies
Like Soots I had my second round of FEC yesterday and can't sleep. My first FEC took 2.5 hours, yesterdays took 5 hours!!........Thus was mainly because I had 2 hour wait to see oncologist to discuss the first round. In spite of the wait I was pleased because he prescribed Emend tablets as I was sick last time. Fingers crossed they have worked and currently have hardly any nausea/ not been sick. I was well enough to go back to work for 4 days last week and am hoping to so that again for the week before next chemo.

Soots, I know what you mean about sore head, my hair was almost crew cut but had shed with a vengence the last few days......when I wake up lots of short hairs on the pillow and head is sore if I lean against anything hard. Now making good use of my wigs...........it was good fun to wear a very short style on day and a collar length style the next.........the girls in the office were envious
Hoping to start physio this week re weak right arm and scare tissue.
Have a good week Ladies, minimal SE's to you all

Jax
x

[sootie961]

Good Morining ladies...its 3 am and yet again sleep eludes me.
Well...I did jinx myself a tad by my last post, my hair did start to fall out the very next day. Those of you that refered to a sore scalp....hell yeah.. I can relate to that one. Nobody told me to expect that pain!! My hair is all but gone but I had been hoping to hang on to it till today Wednesday 30th as my brother returns from 3 months cycling in the States and knows nothing of my condtion and this is the one thing that will give it away as otherwise I look okay! However that is a bridge I will have to cross later on today.
The hair loss thing was my 1st major wobble since hearing I had BC, took me a while to come to terms with it and I guess because its been gradual I'm getting familer with the sight of less hair. How I will feel when I take it all off? I do not know. I would like to think I had the courage to embrace it the you guys have but I cant see it happening......I take my hat to you all.....or should that be hair????

I've bought another new Buff...gawd I love them so comfy! I think this will be my main mode of headgear for my baldy head!! I'm also brushing up on my scarf 'round the head' skills. thats still a work in progress!!!
I had my 2nd round of Fec yesterday, it was touch and go as my neutrophils levels were too low from bloods taken last Friday and they were considering delaying chemo. However I had them done again yesterday and they had recovered enough for chemo to go ahead. The whole thing took way too long, an like you Jackster, I was exhausted after this round of chemo. My biggest SD is not sleeping and I guess that didn't help yeserday.
I havn't had a decent nights sleep since my MX on the 5th July and I'm crying out for some.
I now have sleeping tablets on top of the 'champange pills', steriods, and another antiacid pill. I also got eye drops and mouthwash for my sore mouth should it come back again. Does anyone remember me talking about not having SD's?....lol! .
Needless to say I was too scared to take sleeping tablet tonight for fear of being sick in my sleep, despite the nurses reassuring me this woudn't happen. Paranoia took over! and here I am at this ungodly hour!!
This time round I have had no nausea and yet again no sickness. ( so far thank god) and no horrible bagged up feeling with the constant burping. I have to say tho....I didn't drink anywhere near as much water as I did the 1st time round as I felt so full of fluid the last time I thought that might have contributed to the nausea so I cut it back and it worked. It's maybe not the best thing to do but I feel better for having done it. I wil try and drink a little more today and see how I get on.
Seriously tho...I'm not having nearly as bad a time as some of you guys and my thoughts and big gentle hugs go out to you all. Its a tough ol Journey we are all on indeed and it seems to affect us all in different ways.
I wish you all good week with no or a least minimal SD's...Stay strong ladies!!
Love Soots...xxxxx

[TigersGirlie]

Sorry meant my three girls blooming predictive text!! !!

I can list some awful predictive text blunders,

I was s a texting my boss saying sorry going to be late and my phone weirdly typed (being in mind I have never typed this), I'm going to do anal! !! Well I have never lived it down since! !
Hope that's given you all a few laughs

With love vxxxxxx

[TigersGirlie]

Hi Mandy,

I had to shave mine yesterday as so sore, I struggled as well as my hair was half way down my back at time of diagnosis, I have since had short hair and now shaved, bless my amazing partner who always saves the day and said I look like Natalie portman, anyway you will feel better promise.

Mandy so glad you feeling better finally and hope you get some good days before next Thurs, mine is a week Wed.

Love to all,

Victoria xxx

[my3girls]

Hi August girls, had to let you know that I have felt almost NORMAL since yesterday, phew ! such a relief, never thought I would again. It was a pleasure to be up and about especially after my stay in hospital (thanks for all your lovely measages) . My hair is falling out rapidly now, OH says he is going to have some of it woven into a patch for HIS bald spot and the rest made into dreadlocks for HIM, lol, what a sight, bald patch, dreadlocks and big moustach!!! but he is a love and has been a godsend ever since my DX back in March, he,s not a bad cook either, don,t tell him but some things he does better than I ever did. Hope you all have a lovely day, which I am determined to have before session 2 on Thurs, and to those of you not having such a good day hope it soon passes and that you soon feel as upbeat as I do at the moment.
love and gentle hugs to you all, x PAm

[mandymid]

Hi ladies hope everyone is feeling wel.l I am on day 15 now post first chemo and the side effects havent been as bad as I imagined. I am scared of being sick and really hate it and was sick a few times on the first evening until a madical friend came and jabbed me with the metroclopamide and that soon put a stop to that. The day after I felt fine then the Weds I felt dreadful. Feel so sorry for my 3 kids who are obviously on their school hols and not having the most exciting time ever.
One side effect that really bugged me up until about 4 or 5 days ago was the feeling that something was stuck in my throat, well actually below that as if you had eaten a dry piece of bread and it hadnt gone down properly. Has anyome else had that? Im not sure if you'd say it was reflux or indigestion but was irritating!
Today I have cut my hair to a very short style for me (Well none style basically) as it was coming out in lumps literally.Essentially I put it in a pony tail and chopped it off...not a time to discover that your household scissors wouldnt cut butter!! I decided to donate my hair and was stressing thinking that by time I get int he shower then dry it it will have all fallen out. I think I will have to clipper it in the morning though 😞 What a state!
Mandy xx

[TigersGirlie]

Hi all

Sian yes was donperidone lol our version of Moet, hope they get it sorted for you and you not as sick x
Luvvie (Sarah), I know totally made me re think everything, but unfortunately I'm not allowed at work til I finish my treatment, but have made a decision with my partner not to work full time again, luckily I should be able to do this glacially, ive just supported him through mature uni, hope your not too lonely, but must be niCe to have to just think about you for 5 mins, buy a book and maybe read 50 shades? ?anyway your never alone were all here if you need a rant or anything, I just take the dog out and throw the ball lol,

Everyone enjoy this bank hol weekend and hope you put her out try I enjoy the sun

Hugs Victoria xxxx

[Luvvie66]

Good morning Ladies hope you are all well.
Carolann, thank you so much for posting about the TC chemo. I've not found anyone else who has had it (almost got to the point that I thought my onc had made it up!). I'm anxious about the docetaxel element, the side effects sound harsher than FEC.... but at least they might be able to control these with me, there was no hope stopping the sickness I had with FEC. One question, does it have to be dark nail varnish??
Pam, what a nightmare for you... I'm glad you're out of hospital now. You should ask about a Picc line, I'm having one on 3rd Sept in time for my second treatment. Everyone says it's the best thing they've done.
June22, ask your onc about a Picc line. I wasn't offered one, but when I asked if he thought it would be beneficial he said yes without hesitiation. There wasn't time to get it done for my first treatment but it's scheduled for my second. I just find it odd that you have to specifically ask for these things..... if it wasn't for this site, i wouldn't have a clue what questions I should be asking! Good luck with your first session, let us know how you get on.
Mandyj, go girl! Love the velcro analagy.... made me laugh I'm day 12 today and my hair is firmly still in place. I'm beginning to worry my 18 hour vomit fest has rendered the chemo useless....... not that I want my hair to fall out
Victoria, I can relate to the change of lifestyle thing. I too have always been really career focussed, have a demanding job, a disabled son to care for and, in my spare time, run a charity for children with additional needs. This diagnosis and all that goes with it has forced me to STOP. It's also enabled me time to reflect on what's really important ........ I don't think things will change dramatically in terms of what I do in the future, but I think the emphasis will shift a whole lot. My employer has been really supportive and is allowing me to draw up a timetable of what involvemnt I want in work over the next few months - there's no pressure, but I think that once the boys are back at school I'll need something else to focus my attention on. Hope you find you can strike the right balance for you too..... x

So, my hubbie has taken the boys camping this weekend, the first time in 15 years I've been totally alone in the house. It's wierdly quiet and I'm missing them all terribly. But I have had a lot of time to reflect on all this stuff and I think it's done me the world of good...... it's also done them good to have some time away
Hope you all have a lovely bank holiday, hugs to everyone
Sarah x

[smc78]

If u mean Domperidone then i already have that drug the day of chemo and for 3 days after along with another anti sickness drug although i cant remember its name of the top of my head. It reminds me of champagne too! I was only sick once with my 1st chemo but twice with my 2nd. I did feel better once it had happened but the nausea before is awful.
Sian x

[TigersGirlie]

Hi SMC (Sian)

Thank you for words of support, hope it does get better, in regards to sickness, I had to ask for mine to be changed, it might be worth mentioning my drug above as it has worked wonders, also have been told top drink lots of water days before and during chemo, and a final one from my chemo nurse ask then took slow the delivery and give you more flush??

Hope it helps you as you have me

Victoria xxx

[smc78]

Victoria i'm days away from having chemo number 3 (fec) and i found my side effects for number 2 were not as bad as the 1st session. I'm not looking forward to the actual day of my chemo as i've been sick in the evening of both my previous treatments but i felt ok the day after number 2 so it might not be as bad as u think although its not pleasant.
Sian. X

[TigersGirlie]

Well done Mandy for shaving your head,

My 3 girls am so sorry you have been so poorly, hope you go better with the next one,

June I hope they fitted your pic line for you, I have a Hickman line and it is so easy,

Smc glad your out and about with family,
Had a very interesting meeting with my onc nurse, as I hit Rock bottom during my first week of chemo, apparently they were waiting for it as they considered me a ticking time bomb, I was a 30 year old very career driven lecturer and in my spare time worked in an emergency vets lol, any way my point is I never stopped and then wham I didn't kNow what to do for a week, so i just wanted to reassure people its normal to wobble (or stay in bed for a few days) as they say, and cherish the good days that you feel well!!

Feeling the hugs from all of you and hugging back

Victoria xxx

[TigersGirlie]

Hi all, finally able to post again, now 10days post first fec, first few days very bad with complete foggy head, couldn't even focus on the television, anyway check with the nurses if you feel sick as they have been amazing and changed by anti sickness to donperidone, sounds like a champagne I know and to me it is lol, hope everyone coping OK, not really looking forward to next one but need to look forward.

Good luck to ask first ones and those moving on

Victoria

[smc78]

Well done Mandy. I've had a shaved head for 2 weeks now and still cant stop touching it lol. I woke up yesterday and had forgotten i was bald untill i caught sight of my reflection. My tips will be to always carry a scarf or hat with u as u never know when u might need it. I went to a Wetherspoons pub last week with my family and the air conditioning gave me a chill. I've also invested a in a wooly hat from Tesco as my head is chilly now that the cold and rain has come back. Hope that helps.
Sian x

[mandyj]

Well girls I have done it!
Went to the barbers and got him to shave my hair off (what was left of it). Felt great because last night it was so sore and I looked like a 90 year old! No offence to 90 year olds but I am only in my thirties. I cannot stop playing with my head. I am quite pleased that it is a good shape but now that it feels like velcro I can't stop touching it. If I get too close to my hubby's stubble we get stuck! He says I look like Queen Nefertiti.
Hope you all feel well today.
Love mandyj.x

[Wookey]

Hi Sika and all! You have another chemo buddy! I start FEC-TH on the 29th August (next Wednesday - arghhh!!) - 3 FEC and 3 TH. It's taken since July to be able to access this site but reading everyone's comments has been really helpful. Good luck to us all xxx

[June22]

my3girls... so glad you are out of hospital and recovering after that horrible experience. Such a contrast between side effects from one person to the next. It is hard to guess how each will react. Well done for keeping a check on your temperature and getting treatment fast - I need to buy myself a reliable thermometer soon I suppose!
I am not looking forward to my first chemo session. It took 2 nurses 5 attempts to get a blood sample from me when I met the Oncology team to sign up for chemo... In the end they used three of those attempts on the arm that had Lymph nodes removed, and I was told not to let nurses use that for bloods nor blood pressure! The nurses said it would be a good idea for me to have a PICC line, but none has been suggested by the Dr.
I am dreading the probably multiple attempts at fitting a cannula to start off the not-so-nice experience of my first session. As I still have soft tissue infection from the lumpectomy, there is a chance my chemo will be delayed.
Good luck with your next session on the 30th. Let us know how you get on, and good luck with your wig too.

June22