Anyone from East Kilbride/Glasgow area?

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Hi Annie,
I’ve had 3 Tax and herceptin together and so has Sharon. She found it quite hard as she had it after Fec whereas I had it before. It is a tough chemo with it’s fair share of side effects but once I had the first one I knew what to expect. Must get all the meds in place. There’s only you, Sharon and me who is Her2+ on this thread, it’s an added hassle getting the herceptin but we need to be thankful we have it, prognosis is worse without it.

Hope all goes well with it, if you have any questions ask away.

Lots of luv
Fiona xxx

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Well guys, hi, I’m Diana. Reading your thread is great to find people locally with BC, and all your handy hints for coping with things. Unfortunately I have IBC and wouldlike to buddy up with someone local who has similar. I start FEC next Friday and am expecting it to knock me out for a day or two, bodily assalt etc.

Been to Carol at the Maggie and I too feel ‘fortunate’ after claiming to get some £64p.w. but know I can’t live on that and it seems unlikely that I will be able to earn anything much. Finance is a huge worry, especially as I am 58 and just done a post graduate degree to enable me to start a complementary health business (Ha ha, marvellous example of that eh!)

Keep up the great chat people, it all healps. Love Diana

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Hi Girls

What a busy thread this has been today!

Thanks for all posts about aches and pains with the injections, I’m so relieved that I’m not the only one to experience SE’s from them. But what a difference they make - I almost feel normal at the moment.

Thanks for your advice about avoiding hugs, kisses and hand shakes at the wedding, I’ll definately do that.

Lynda - you and the other girls here are so brave about loosing your hair. I was terrified about loosing mine so had to wear a cold cap, but what a relief it is not having to wear it with the cmf.

On a personal note - I can’t believe how quickly all my body hair has started growing back, my legs and underarms are in desperate need epilating - what a drag!

Take care all.

Helen

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Hi gals

Fiona, thanks for responding so quickly. I knew there were some others who had tax and herceptrin concurrently, although Alana, the Sister at the Onc unit called me yesterday for clarification!! Like I planned out my treatment. They have already treated Sharon, so unusual as my diagnosis is, it’s not unprecendented. Except that my cancer is non hormone responsive. So that is pretty unusual.

I was bemused as I was told there is no cancer in me and felt I was being put back into a hamster wheel. Funnily, after feeling euphoric initially, I felt very weepy. Now I’m just fed up. More months on chemo then all the rest…

Diana, warm welcome. Jobbie, isn’t it? This vile thing that had happened to all of us? Like you, I returned to study in 2001, part time, and then full time because I got the ‘study bug’. Still have, wish I could afford to indulge it.

Bit down, hating myself for being sorry for myself. Scared what the next round of chemo will do for me short term/long term, realise that my life and plans (such as they were) are no more. Will have to get used to a new ‘normal’ I suppose.

With apologies for being such downer … I send you all the warmest wishes.

Annie xx

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Hi All

Just a quick note …

Diane - sorry I missed your post, think I was busy typing my message as yours appeared.

I’m really sorry you’re having to join us and you’re having to go through this crap experience too, but I’m sure you’ll get lots of support from this site.

I was diagnosed in Feb on my sons 4th birthday,I’m now 39 and have 3 kids (7, 4 & 1). I’ve had a lumpectomy and I’m now half way through my e-cmf chemo (yippee!), fortunately I’ve managed to avoid most of the chemo side effects so far, I just get really tired.

I hope everyone else is OK.

Have a great weekend

Helen

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Hi All

Before I start I’m going to apologise to everyone about this post, but I’ve had such a crap afternoon and need to sound off to someone!

I got an emergency appointment at the Dr’s this afternoon as I slipped and fell in Tesco’s yesterday; yes, total embarrassment, and banged my knee. But this morning I noticed I had 2 big lumps on my chemo arm, one which was very bruised and another that was hard and really sore. Anyway I saw this really old locom, who as I’m explaining what had happened was repeating what I’m saying and typing it into the computer; very off-putting. So I asked him to stop typing and listen whilst I was talking to him and once I’d explained my concerns he asked what I wanted him to do? – er, hello maybe check it out would be a good idea! Then he asks why I’m having chemo; so had to explain that, adding that if he’d checked my notes before I went in he’d be aware of it. Then after checking my arm, I asked how the immune system dips with the 2 doses of CMF explaining that I’d been having the G-CSF injections as I’d been neutraplenic last month, and he then he asked what G-CSF injections were for! and made a couple of really stupid comments about my chemo, at which point I stood-up and said that I was obviously wasting my time talking to him as he hadn’t got a clue what I was talking about, walked out and went to the reception desk and burst into tears – how to embarrass myself on a Friday afternoon!. Poor receptionists, they all started phoning the other doctors to get me seen straight away by someone else. Saw a really nice doctor afterwards, explained what had happened got checked over and then poured my heart out about all the SE’s I’d had with the injections and how my backache was so bad I’d thought I’d got secondaries and how crap it is now knowing that every time I get an ache or pain going forward I’m going to panic that it’s something more serious – poor guy!

So, all in all a crappy afternoon!

I can laugh about it now, but it was awful at the time. So, however crap your days have been, I hope I’ve cheered you up knowing that they probably haven’t been as awful and embarrassing as my day!

Big Hugs to everyone and thanks for putting up with my moans!

Helen
xxx

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Hi Helen,
poor you!!! Quite right to have a bloody good rant!! You certainaly didn’t need a dopey doctor that’s for sure. Hope all your bits and pieces are ok? Re jags, I am having terrible back ache! Had it last month too but didn’t blame the jags. Now I have the same pain as last time I know it is the jags. I’ve been lying on the floor to ease the pain, it seems to be in my lower back with pains going down my legs when walking.

I’m lucky to have two lovely doctors in my surgery, they’ve been very good at coming out to give me antisickness jags. I was even sick when he came last time and he had to stand around waiting till I crawled out the bathroom!!
All pride flies out the window with this illness.

Hope you are all fine now!!
Lots of big hugs.
Fiona xxxx

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sorry to hear what a crap time youve had helen… sending loads of cyberhugs your way ((((HUGS)))

i know what you mean about every ache or pain… it was an ache that took me back to get checked this year but was nothing there but it did mean i got an earlier mammo which showed up a new unrelated lump… but every time i got a sore knee id thind got it in my bones or a headache would have me with brain mets.

but i have met loads of women who have got to that stage where they dont ‘worry’ about it… a lovely lady in the bed next to me when i had surgery who had BC 16 years before hand with a mast and had stopped worrying about it after about 5 years… but 16 years after original dx she was found to have another BC… but she had 11 years of not worrying about it… which for me i can only dream about.

my hand is still knackered from the cannulation butchery which is a bummer but there is no way they are sticking the next lot in my right hand.

hi diane good luck with the feccing! i was a student when i got BC the first time… did a nursing degree in 2001-2004 and then midwifery the day i qualified as an RN from 2004-2006 and was diagnosed the day i registered as a midwife… because id been a student i didnt get any benefits help due to not paying NI conts for 4 1/2 years and i was informed the DLA was just for people with secondaries… although the criteria may have changed since then so if its for everybody with cancer then i may apply for it as i will be going down to half pay at the end of next month!

think theres an ibc forum on here too so they maybe able to help with that… my first one was er +ve IDC and second one was triple neg IDC.

Lulu x

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Hello

I hope you don’t mind me joining your thread.

It’s good to know that we have a wee Scottish slot in here.

thank you Feemac for pointing me in the right direction

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Hey Helen…

Hope you are feeling a bit better now…hang on in there.
P
X

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hi Woodlark

hope your doing ok.

Lulu x

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Hello everyone, I was diagnosed on June 11th, (1.5 cm lump removed grade 2, lymph nodes removed no cancer present) still waiting for final results but looks like I will be starting chemo in a few weeks, I live down near Beith. Im feeling quite isolated, and just a tad terrified.
I was initially told it would be radiotherapy but last Monday was told it would be chemo, I will be going to the Beatson.

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HI Woodlark and welcome.

You have a right to be scared, it’s a scary thing we have. At lest you won’t need surgery for lymph node removal, so that that’s one less thing to worry about. Did you have the SNB?

What chemo will you be on? have they told you yet? This is a great thread for sharing experiences and it’s great to know that there ae other people who have survived this. I thought I was just going to get rads and Herceptrin, but was told last Thur that to be on the safe side 4 more TAX and Herceptrin concurrent, if I can take it, so I am apprehensive - again!!!

What has been my experience is that nothing is as bad as you imagine. If you look at the posts, we all get through this. Actually, I felt sickest after dx and before chemo, I was on anti-emetics then!! I always get sick with nerves. There is a threat ‘Top tips for getting through chemo’, which is very useful.

Actually, what I am most nervous about is my veins, they could hadly get blood from my in hosp, and they had to use the vein in my wrist for aneathetic - took about 15 mins, and was sore. Has anyone had a line fitted? I think I will need it as I am to get Herceprin on a Monday and Tax on a Tue and they can’t use my ‘at risk’ arm.

Helen, poor you! Imagine getting a doctor who isn’t up to speed on cancer treatment and s/e?? I think we know more than some of them!!! I’m a real doctor dodger, didn’t even go to hosp when my temperature as 38.3! Had a hellish infection, of course! set back my chemo and laid me open for all the s/e after it! Not this time, no sireee, we’ve been through quite enough, thank you! You ok now pet?

Fiona, are you still having a bad time on FEC? You sailed through TAX and Herceptrin didn’t you. Just goes to show how unpredicable cancer and chemo is? Have you been to Maggie’s lately? I havenet been able because of appt, surgery etc. Must get down next week to see Carol. Still no word on DLA, disgraceful!!

Now I have got to get all my dental appointment rushed through because of damage caused by treatment! Oh Joy!!! At least I am on a good dentists list now!!

Has anyone heard from Sharon?

Pauline, doll, how are the rads? I was hoping to start them soon. God knows when I’ll get them now! You ok?

Diana, I had FEC and I can honestly say that for the first 6 weeks all I had was a loss of appetite - watch out for constipation, Lots of us get it and it is not like ordinary constipation!!! Have Movicol and (if you like them, Majool dates) in your cupboard. Or any dried fruit. Got me through!!! The doctor will prescribe the Movicol for you. It is quite pleasant to take. You will probably get steroids for a few days, which give you energy and help with possible side effects too. And many of us get immune boosting injections. I am so hoping to get them this time round as they really give me a boost. They might cause bone pain (didn’t with me, expect once), so make sure you have pain pills, just in case. I self injected after a while and I wish I still had them!!But honestly I only started being ill once I got a horrible infection midway through my 2nd FEC. I didn’t even lose my hair for a month, although, be prepared, almost everyone on FEC loses all their hair, and lashes and brows too. But they have great wigs, so try to get one as soon as poss, and if you scalp starts tingling or stinging, then hair loss is rapid. Helen used a cold cap, sucessfully, but I ws advised with FEC it wouldn’t work. Hair grows back very quickly!!! I had my first ‘bum fluff’ hair shaved on Monday and hair is covering scalp already! Hair boutique in St Enoch Square is where many of us got our Irish Jigs. Daine and Woodlark, have you applied for DLA? Please do so. You have to be ill for 3 months before you can apply, but you get it backdated to your application date, so don’t delay. It can take 15 weeks to receive a reply after the initial 3 months (I still havent!) so please don’t delay!!! Carol at Maggies or one of the MacMillan CAB advisors will fill the forms in. They are horrible and invasive, but the girls will fill them in for you. They know the language to use too…

Off to Blackpool, back on Wed, getting reflexology on Thur + dental work, (if I can arrange it) Going to try to pop into Maggies in the PM. Then Bloods, then back down again while I am still well.

Fiona, how did you cope during TAX, I know Sharon found it hard, but that was on the back of FEC and before surgery? What was you experience? Do you wee black varnish to stop nail loss? Any advice, most gratefully expected.

Enjoy the rest of the weekend wondergirls, off to Blackpool tomorrow,and will bring you back a stick of rock!!! Picking up my Dell, which I love more than an inanimate object has a right to be loved!! No one will touch him again unless they are wearign scrubs and latex gloves!!!

With love and hugs

Annie x

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Sorry, just need to clarify about DLA. Apply NOW. They date stamp your application, but you can’t submit it till you have been ill for 3 months. So file it for 3 months, then have someone fill the form in on your behalf. It can take 15 weeks for them to get back to you, so be prepared to wait. I was dx on 12th Jan and am still waiting, and I get it just now for a different condition!!! Just call them, Carol at magiies or Macmillan have the number, but don’t delay, it takes ages in the best case scenario.

This is not a means tested benefit, so don’t wait till you think you need it. You will only get it as long as you are il.

I have it for a shoulder injury. It was my consultant who told me to apply (I had never heard of it) and his secretary who called them. This was in 2006 and I got it within days, and backdated. And I was working full time with a decent income Only get the lowest rate of £18.50 just now, but I cannot believe the wait when we have a life threatening condition!!!

Anyhow, the point is that it does not matter what your income is!!! And it’s non taxable, so please do apply. Cancer is goddamn expensive!! This is meant to allieviate some of the horrible things disability causes.

Blessings

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Hi Girls,

Annie, Tax is a difficult one to give advice on!! SE’s can be so different from person to person… I had mouth problems,ulcers, thick furry tounge and Thrush(everywhere!!) so good mouth hygene and nystatin best friends from day one! constipation (but you know how to deal with that one!) some people suffer diahorea about day 4(not me). Middle week is bad for white count but I imagine you’ll be on the injections… Dark nail polish a must for keeping hold of those nails. I’ve been using it since April. I have 3 “dents” or ridges in each nail, one for each Tax so you can really see the damage chemo does…but my nails are still on!! in very bad condition but I rub almond oil on them between paintings. The chemo nurse said last week that I should continue with the nail varnish for a while yet as Tax still in my system and it’s the UVA reacting with the chemo that causes the nail to die… Yeck!! Sharon is non hormone as well but she has IBC… The fact that you are non hormone is probably why you need Tax!! more ammunition!! Enjoy Blackpool, hope you have a good time.

Woodlark and Diana, Welcome, This will all seem very daunting to you right now, but this site is good for getting help, advice and general tips. Please ask away if you have any questions, If you’re really stuck post a topic and almost definately people will reply with help and advice.
Woodlark, you have the same size tumor and grade as me but I am ER+ so will be on Tamoxifen and am also Her2+ which means I have to have herceptin, you haven’t mentioned if you are positive or negative for anything but maybe that’s what you’ll be told with your results.

Well that’s the rain on again, never far away is it!!

Everybody take care
Hugs
Fiona xxx

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Hi Cloudhowe and Feemac
Thank you for the welcome. Cloudhowe I have had some lymph glands removed…but they were negative, and I don’t know what an SNB is. Im sure I will find out soon enough, I get my Hep2 results on the 27th July…and Ive been told I will probably start my chemo shortly after that It looks like it may be FEC…does that make sense?

Im off to have a shower as Ive not had any hot water since my spare room was flooded a couple of days ago. So Im a bit ginky. he he!!

Lovely to meet you ladies…and I won’t be a stranger.
Be warned I can be a bit of an old moany face at times

Gentle hugs

Maggie xxxx

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hi everyone

Not been on for ages been having such a crap time on the cmf with sickness and been really tired but i so glad that I have now finished my chemo had last one on fri so feeling crap just now but just soo happy to be finished my treatment… woohoo

Start my rads on Aug 12th so got a bit of a break

Take care lol

jo xxxxxxxxxx

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Hi Joanne,

Well Done for finishing chemo!!!Sorry to hear you’re having such a bad time, I can sympathise with the sickness, I have it bad on FEC… I have last one next Tuesday, I’m dreading it as I know what’s coming, but will be so relieved…I’m starting rads on 1st Sept.

Hope you are taking it real easy, which is hard!!! especially with kids off!! Enjoy your break till rads start…

Best wishes
Fiona xxx

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Hi girls - not been on for a few days so good to see so many posts
Woodlark and Diane - welcome and hope we’ll be able to help you at the start of this horrible disease -
Helen - what a terrible experience you’ve had. How is the leg now.
Annie - have a great time in Blackpool.
fiona - how are you dong with TAX. I’ve been on it on and off for the last 4 years. Had 10 lots then break then 12 then 5 month break then 6. SE’s are pretty awful but you get to know what to expect and just get on with it.Had tiredness, sore joints, horrible mouth and the dreaded constipation. All food and drinks tasted disgusting for two weeks then the 3rd week started to improve. Lost some of my finger and toe nails.
Joanne - you must be so pleased to finish chemo.
My hair is really coming in now - ditched the wig it’s so uncomfortable in the hot weather.
Going away for a couple of nights to Auchterarder with one of my friends. Nice to get away .
Love to everyone
Sheila

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Hi all

Sorry not been on for while.

Rads got delayed till Tues as they weren’t happy with alignment so had to check it all again, going ok so far.

Welcome to Maggie and Diane, I was diagnosed 22nd Sept, I have IBC which is Hormone Negative and Herceptin Positive. Had 8 lots of chemo before mastectomy and Recon 12 weeks ago.

Annie - Mr Musa said to me I would prob get more chemo after surgery which I psyched myself up for then saw Dr Yossef who suprised me for saying I didn’t need anymore as I was getting herceptin, think that’s cause I’ve been on it since Jan.

Helen - sorry to hear about your fall, i would have just phoned the Oncology unit or Breast care team see what they would say.

I asked today about aches and pains as I am really bad, it’s chemo, herceptin and Zolidex, what we are putting into our bodies we have to give time to leave.

Sheila - my hair looks like a short hair do now, it’s only been 4 months

I applied for DLA end March and I just found out last week I was accepted, had to go for medical for ESA but Jo didn’t. Still waiting to hear outcome from that.

Oh nearly forgot to say, my 2 big toe nails were hanging off and 5 finger nails came away from the nail bed but didn’t come off completely, I have always used dark nail polish on toe nails, I haven’t had chemo since march and the nail thing only happened last month so just showes it does take a while for our bodies to get rid of the toxins but we have to remember that these toxins are helping us.

We will all be back to normal soon, get our lives back on track.

Love and hugs to all
Sharon xxx