Starting Chemo in Coventry

HEY!!! had 4th and final epi today so i am officially half way thru - am so pleased. Caroline did the rites and apparently i should have seen prof grieve last week… but will get an apptment for monday. i move on to xeloda next but Caroline said not to get over excited/think it is easier because some people have had real probs on it and she said the line is that excessively sore hands/feet and/or the runs means you stop taking the tabs and ring in, see prof grieve and he decides what you do next - carry on with it with other drugs or move to CMF.

i told her re this thread and the fan club and she smiled and said Mr lee - my surgeon - who is acting chief exec - had also forwarded to her my complimentary email re the way people are at cov, wonderful BCNs and the good treatment - she said it is lovely when people do because it has real feel good factor.

laughing - she also said i looked disgustingly healthy but to be careful - despite having the blood counts of a healthy young male (HMMMM… sounds dodgy to me) - i have to bear in mind i am going to get more tired than i am now… gah - and GRRR - i am fed up of feeling tired.

so small eyes and a face that looks 20 years older tomorrow but at least i am half way thru!

hugs to all

jennifer x

Hi Jennifer, I saw Caroline yesterday and told her about our fan club, she was really laughing!!! and you do get more tired, i finished chemo (CMF) four weeks ago and am currently going through a stage where getting out of bed is an effort! husband reassures me that it is my “normal” before BC state!!!
Anyway hope to meet you all tomorrow Anna x x

Good on you, Jenny - I’m right behind you - only 2 more epis to go before I can say I’m half way through too. I know, I know, I’ve still got another two sessions left - but I do have to keep telling myself that I’m half way through the first regime!

Looking forward to seeing you tomorrow. Naz.

Hey Naz - quarter of the way through the whole thing!

I’m feeling comparatively chipper today - better than the previous 3 - maybe psycholgical because it’s the last one?

Hmmm husbands can be so ‘honest sometimes’!!

J

Hi: I’m new to this, but here is the history - had my op WLE and lymph clearance on 10 March (delayed two weeks by chest infection) not with Parker (he was on hols) but with Alamishi - went home 11am after op 5pm on previous day. Am now waiting to start the chemo. Am having the seroma drained tomorrow for the ninth time! Did anyone warn me about this? Can’t remember.

Have been offered the TACT2 but can’t make up my mind. Don’t really fancy having the treatment shunted into fewer weeks and it being more intensive. Was hoping to have some life in between treatments. Am seeing Julie week tomorrow to go thru the detail so hopefully that will help.

I seem to remember reading a message about not knowing what to expect from side effects and always being told “everyone is different”. I’m just trying to get as much info as pos so I have some idea of what could happen so if it does I won’t think the world has ended.

Am hoping to carry on working during the chemo. Anyone doing this? Don’t want to become instant invalid but am not going to martyr myself just to prove I DID go to work!

Definitely have to have wig - don’t even take dog for walk without doing hair - sister has had wigs for years as she has Lupus disease and very little hair - she always quotes Dolly Parton: “How long does it take to do your hair?” “Don’t know - I’m never there!!”

Look forward to hearing from anyone with anything!

C

Second message re Eyebrows - Goggle Natural Image - and go on wigsandpieces - they do wigs AND transfer eyebrows, all shapes and colours. Said to last several days and won’t rub off. Worth a try!!

C

Hi Carrieann - good to hear from you even though, of course, we would not want to welcome you to this thread in the first place.

The Seroma? Yes, having it drained so frequently, apart from anything else, is expensive – what with having to pay the car parking fee! I was aspirated twice a week for 5-6 weeks after surgery – I had a mastectomy with immediate latissiums dorsi reconstruction - and by the last week the seroma was probably draining about 100-150mls of fluid. I do remember, in retrospect, being told that I could probably expect to be ‘drained’ several times after surgery – and reading about it somewhere beforehand too – so I suspect that they did tell you but that, along with all the other information you were given, never mind your anxiety, it just did not register as anything significant to worry about. Certainly, I understand that they are very common. I do still have a small collection of fluid at the end of my scar on my back/under my arm but I am hoping that my body will re-absorb it in its own time of its own accord - soon. They usually advise not to drain a seroma when you start chemotherapy because of the risk of infection when your white blood count is already low – but I have heard of some people nevertheless having it drained while on chemo.

I’m ‘on’ the TACT2 trial – I had several questions concerning the use of some of the drugs – but at the time I definitely wanted to be allocated Arm 4 of the trial – both accelerated and oral medication – I wanted the chemo finished quickly and as painless as possible – but I was allocated Arm 1 instead – and while I was disappointed initially I was also relieved – I had heard that the injection of G-CSF could be really quite harsh – and my fear of needles so far has proven manageable so that being given the drugs intravenously, so far, has proved okay. I would just say that if you do decide to go with the Trial you can, of course, withdraw at any point.

Yes, everybody does differ but I do think that some side effects are quite common. I suspect that Julie will give you all the information you need about side effects and what you need to do – i.e. who to phone and when – should you have any trouble. I have only had two doses of epirubicin but the second dose has been relatively plain sailing – and although I did have terrible ulcers and wisdom tooth trouble after the first dose I think I was more afraid of the side effects than really suffering from them. But, of course, everybody reacts differently and if you are in any doubt you should contact the medics for advice. There is also a thread called “top tips for chemo” – or something like it – which is really helpful – I’ll see if I can’t find it and bump it up for you.

I’m signed off work until my chemo is finished – and may well not go back immediately afterwards. I work in London and was advised not to commute to work – again because of the risk of infection. I do have the opportunity to work from home – and may very well do in time – but at this early juncture, after the last few months, I don’t feel strong enough yet to put myself in a position where I would be beholden to other people for work with deadlines etc. I’ve also found that my level of concentration has dropped terribly. Definitely do not become a martyr – but if you can get into work and you find it helps then I say go for it.

Julie will probably make an appointment for you to see the ‘hairdresser’ for a wig-fitting – she is really helpful. I’ve got several – similar styles, different colours – but am only really just beginning to feel comfortable wearing them outside – apart from anything else they irritate my scalp – so I would probably suggest you invest in a few headscarves too. There is an US site which do excellent scarves – and some cut price wigs – not sure we’re allowed to mention it – but I think it is headcovers.com. Do be careful of import charges, though – which I think you incur if you spend over £20, or thereabouts.

My goodness, I’ve gone on a bit – sorry! Hope you find something in here, though, that is useful – if only to remember never to listen to me again.

Keep in touch.

Love Naz

Hi Naz.

Just read your comment after i had written mine on the other chemo thread. Also a long letter!

I’m sorry, but i presumed you were having a low. and had found a thread that was helpful to you!! it’s quite the opposite, you’ve found a great gang all attending Coventry! That’s great. I do hope you are able to meet up together. Maybe you’ve done that already?

Sounds like a great place. You’re not far away from me, as the crow flies,up the line form Milton Keynes.

Take care and speak to you again soon. I’m waiting for my low days to start at the weekend. Oh well, it won’t be long, hopefully.
Goodnight and God bless,
Ann x

Hi Naz: thanks for your long response, really nice you have taken the time. My problem is that I am a control freak (as my husband says!!) and have difficulty with intangibles. I think once it gets going I will be better - at least I will know what to expect.

My sis suggests getting my wig hats ahead of losing the hair and getting used to them - sounds a good idea. The Wigsandpieces website also does fancy scarves and liners for them so they don’t irritate your scalp and give you some height. Also a ‘mob cap’ to keep your head warm in bed - now how sexy is that??

Will keep in touch/

Julia
x
(Carrieann is the dog!!)

Hi and welcome Carrieann and Ann!!

Ty for eyebrow info - will look it up tho have this vision of me sticking them on squinty!!! currentlyl one is much thinner than the other.

I had a seroma too after mastectomy and axillary clearance (done my Mr Lee) and was being drained right up to the start of chemo - in fact it delayed the start by a week - I think Sue and Judith took pity on me in the end because i am desperate to get the treatment over!

I am on the Tact 2 trial too - arm 3 so it’s epi followed by xeloda. It suits me fine because it’s the fewest visits to hosp. I have just fished the epi and i have been lucky with the side effects - just feel grot for a few days and weird sleep with the steroids so have to take the last one by 4 pm. I had the last epi on Wednesday and i have been having the weirdest dreams re plumbing!! So in 3 weeks time xeloda - tho Caroline did warn me that they have had a number of people reacting badly to it recently… hmmm. You will get lots of info before having to decide.

I waited to see how the first epi went before going back to work v part time and it has been ok so i am doing 21 hours or so from next week. But it is v much a case of how you feel and if you feel rubbish it aint worth it!! my concentration isn’t what it was but hey…

Hey Ann - direct trains to Rugby from MK…

Jennifer x

Gah - sorry Julia!!! didn’t read the post properly!!!

I haven’t needed anything on my head in bed at all because i tend to do too hot if anything!! My bloke said the other day that he wasn’t sure he wanted my hair to grow back - he quite likes the peach fluff look and me being balder than him!!!

Hi to you all

You do sound like a happy lot, hope you don’t mind me posting. I am not being treated in Coventry but live near many of you Rugby girls nearby in Crick hence being treated in Northampton.

AnnaG - I commute to Milton Keynes to work, are you being treated in MK or Northampton?

I am halfway through chemo, just had the last FEC (horray) and moving on to Taxotere (boo) which having read about I am not looking forward to. Anyone else having this, can you tell me anything positive?

I hate wearing a wig, does anyone go ‘commando’?

Hope you don’t mind me joining your thread.

Take care and best wishes to you all

Di

Hi Di

nice to see you - I’m in Brownsover so i can almost wave at you down the A5!! I keep forgetting how close we are to the county borders - how’s it going at Northampton?? It is a good feeling to be half way through isn’t it.

i’ve only gone commando a couple of times so far in public - tho i do at home and when i am in the office - i think i will do when the weather gets warmer because the wig does make my head v hot and itchy.

met up with anna and naz and it was lovely!! we found plenty to laugh about and i’d love to do it again. I agree that this is one of the happy threads!

Jennifer

Hiya, these threads are so addictive! Hi Jen - yes, it was really good to meet up - we shall definitely have to meet again - as I said, I’m in danger of becoming ‘housebound’ but I had been looking forward to this afternoon from the day that we arranged it.

Right now, I’m playing dressing up - in preparation for my interview on Monday - I’d forgotten that I can sometimes do smart - I’ve just to convince the panel that I can also do the job!

In the meantime I’m just going to play!

Speak again soon.

Love
Naz

Hi Jen, Naz and Anna Sounds like you got to Somersaults , hope you did’nt make yourself sick on banoffee. I drove for the 1st time for 4 months , Dunchurch then back to S’burys with hubby , Treated him to a bacon buttie for his b’day BIG DEAL EH , my appetite is still very depleted but managed a scone and a cuppa.
Love toyou all Bobbiexx
ZOE finished CYCLO Tabs Tues when can I expect to get my energy back ???
That many names popping up I’m getting confused who’s who and whose at what stage and where!!!

me too re housebound - most of my hobbies are indoors stuff anyway - lol i can read for Britain when the brian brain remotely works. mostly i don’t go out because i do sleepy by evening. i am trying to do more at weekends/lunchtimes but equally i am used to it be me and the cat

and i have always done the work thing since i lived here and just come home so I don’t have that many real friends in rugby (um 2) and some in Cov and except for my sister i haven’t ever talked to any one else who has had breast cancer. it was the nicest thing to get real life perceptions from u and anna - am so grateful you decided to make the date anna!

The laughing was good… but the lil ‘lovely’ boy and his ‘delightful mum’ in tesco - GAH! thinking V rude words.

No reason why that job should not be yours naz - clearly u do stylish (hah me lazy - it will nearly always be black top and bottom in my case!!!). Loved the earrings. Presentation is not an issue for you. it’s keeping a head on about wanting to work nearer home - and just look at it like a trial run and enjoy - there will be other jobs as well and best thing would be to do a no pressure thing? Just go and try and enjoy?

feeling a bit sleepy now but it has been a v good day. thank you!

oh and i like jen but not jenny - and jennifer if full name but sometimes i get into tiz re jenny!!

Love j xxxx

and sharon - you started the thread - i hope u are ok???

Good, I’m glad we’ve got that clarified - I did wonder whether in fact I was offending anyone by getting their name wrong - so Jen it is then. If there is anyone whose name I have got wrong - apologies - but please tell me so I don’t continue to offend!

Me, stylish?! Lovely! That made me laugh. I’ll shall be going to the interview all dressed in black too! Yep, you’re right, I’ve just got to go with the flow - and try not to get too stressed. After all it is only a job.

Hey, Bobbie, a trip to the supermarket is a day out for me! You must feel so good to have got behind the wheel again. Has anyone been driving it for you while you have been on the epi? I’m so amazed that my car starts first time everytime - it is a new car - only a cheap one - and, of course, on finance - so it shouldn’t surprise me really - but my experience of cars up until just recently was of ‘second’ hand ones, when you had to make sure you had a set of jump leads and a petrol can in the back! You must be really excited - almost like having a car for the first time!

I’ve got the house to myself all weekend this weekend - my OH has gone to London - and tonight I’ve got vegetarian sausage casserole (of a sorts!) for my evening meal - and I’ve just poured myself a glass of red wine, which doesn’t taste too bad - I think its because I usually buy the cheaper stuff but treated myself to a more expensive one a few days ago - it was on offer! Although I’m a little upset - we had a barney the night before - he rolled his eyes and told me to ‘be positive’ when I dared to comment on the limited movement of my arm - and we hadn’t spoken to each other when he left - but I am definitely looking forward to a couple of evenings on my own!

Enjoy your weekend everyone.

Love, Naz

really pleased re u driving bobbie! and a bacon butty does most men fine

Hi Naz and everyone

I am on the Tact 2 trial but on arm 1. 3rd Epi was a nightmare felt so sick veins are so sore I have come to the consulsion that I dont like this and the end is not in sight at the moment it feels like an eternity. Caoline is getting the sickness tablets changed as I felt sick until Thursday of this week and also no taste.

Reading your note I am still being drained but slowly going down having tis done every 2 weeks until I cant bear it any more. I am also driving have been for about a month. I am due at the Arden centre 23 or 24 april just waiting for the date to come through .

I have also gone back to work this week to get normal again what ever that is. Wore the wig the first day couldnt stand it as it kept riding up so took it off in the open plan office in front of all my colleagues they just stared at me and some just said typical of me to do something like that. OH and Caroline had to remind me that I am not to do too much or work full time as I have a family life as well. They were both right so didnt work Thursday pm and yesterday but I wouldnt admit that the OH was right blamed him any way.

All take care perhaps we will all get together soon

love
Sharon
xx