Breast Cancer Now Forum

Hi there ladies!! I've finished my zapping - well, on January 24th, where does the time  go?   I haven't had any skin issues or fatigue.   If anything I feel more awake than ever.    I used the Biafine cream and my skin's fine.    I started on the Anastrozole AI tablets yesterday.   I'm a little worried about the side effects I'm reading about but we'll see ..... I might get lucky again.   I'm interested in some comments below re being 8/8 ER+.   Lisa T & JD-W - what does that mean, please?  How did you find out?    I'm ER+ so any information you can share would be interesting.    Also, I saw a couple of comments on Instagram lately where people mentioned their 'markers' - can anyone enlighten me on that what that means?      Now that the active stuff is all over, I'm feeling a little abandoned.  I've been cut, hit with gamma rays and taking tablets for 5-10 years but I'm still not happy that I don't know 'it' has actually gone.   No scans now, nothing.   It just doesn't seem good enough.    Is it just me?   willie x ... View more

I looked up the Avene products on mysupermarket.co.uk, they're all 25% off in Superdrug so a lot cheaper than Boots.   However, the Superdrug shops I went to don;t stock them.  So 25% off nothing is nothing!   I ordered a tube of Biafine on Amazon last night (15.99 for 186g, pretty similar prices to the Avene stuff) and it's due to arrive this morning.   How do they do that??   I was also looking for some large gauze pads so that I could smother myself in (cheaper) moisturiser and leave it to soak in but I can't find any big enough.  I want something that wont soak up the cream, ideally. I'll try the local chemist.  Or maybe try a flannel?     ... View more

Right then lassies, let's get this ball rolling!   I'm starting on 3rd January, 16 sessions.   Any idea how the number of sessions is decided on?     Moisturising - at the planning session, the radiologist (or radiologist's assistant, who knows?) suggested E45 cream or anything unfragranced.   I looked at E45, it says on the tub that it has parafin in.   I thought you had to avoid the creams with parafin in?  Confusing.      On another of these monthly threads, one of the girls living in France recommended Avene Xeracalm cream.   They also have a cream called Akerat for very dry skin and it says it can be used 'with medicines'.   I looked them up on the Boots website and, while not the cheapest, they look interesting.   I might invest my points in one of them.     I had planned to 'practise' by moisturising with stuff I've already got in the weeks before I start but I've only done it twice.   I'm rubbish at being a girl!   Willie x   ... View more

Greetings ladies!!   It's been a while I know, I last appeared here on 24 July and while I kept meaning to dip back in, life got in the way.    I've caught up with all your posts for the last few months today and it's good to see the posts about chemo side effects slowly being replaced with posts about hair growth and approaching radiotherapy.  Here's my catch up.    I finished my 4 FEC / 4 T on November 22nd, so five weeks 'out' today.   I have to admit to keeping quiet here during my FEC cycles as many of you were having such a bad time and I thought it ungracious and fate-tempting to report that I didn't have any adverse side effects at all - other than the hair loss and weighing a ton (self inflicted!).      I hit a icy patch a few days before my first Docetaxol, I woke up with vertigo/or a derivative of, it wasn't looked at too closely as it's not life threatening.  A couple of days on travel sickness pills sorted it out, although I walked like I was drunk for a week or so after.   In the general scheme of things, it was just a bump in the road but I wouldn't wish it on anyone.     I had a PICC line put in before the poisoning started.  I had expected it to last through the 8 cycles but it seems it's not usual for that to happen.   It stopped working, they couldn't get any blood back out of it during the weekly maintenance and for the nadir bloods.   I had an ultrasound to see where it was, if it had moved but it was being blocked by a clot just below my collarbone. They replaced it with a mid-line, a shorter version, and the hospital told me that I had to give myself daily anticoagulant injects for three months.   That freaked me out, being needle-phobic, but I had to suck it up and get on with it.   I did that for a week and then the oncologist asked me if I was taking my tablets.  "TABLETS? THERE ARE TABLETS?" I shrieked ... when he came back up from under his desk he wrote me a prescription for tablets.     The Docetaxol wasn't as kind to me as the FEC, I did get very tired on the first lot, I had to take two days off work and lie down but that was on the back of the vertigo.  The second cycle was easier, I took two days off just in case.  The third and fourth cycles were even easier although I did take the days off as a precaution.   I booked a dog walker for those days as I found getting round our (steep) park, pretty challenging. My fitness is not back 100% but it's getting there.   The mid-line kept me going for the next 3 cycles.  That one failed just before the last cycle and I had to go 'traditional' and have the poison administered into my hand.  I am just so grateful that I had that line for 7 cycles, even if it did give me a clot.   They told me the clot would dissipate over the three months and then I'd be able to stop the anticoagulants.  However, a follow up ultrasound last week has shown that it's still there and the radiologist has suggested that it'll be there permanently and that I just need to take the tablets forever.     Last week also saw my annual mammogram, brought forward slightly because of my forthcoming radiation, on the remaining boob last week.   I was a bit fraught in the run up (understatement!) but it was clear.  Hoo-effin-ray!!   I've got radiation starting on 3 January for 16 sessions.   I'm a little concerned about the burning and will do as much moisturising as I can but I'm really rubbish at all that stuff.   I'm also worried as I have lymphodoema in the arm on that side and it's stretching across my scar site.   It's very fluidy and I've got an dread of the radiation heating up the fluid and me boiling from the inside out.   I'm no doctor!   On a more positive note, my hair started to grow during cycle 7 of the poison.   It's getting wiry round the sides but is still very sparce on top.  The different lengths make me look like a cross between a baby bird, a 90 year old man and a testicle.  That's a good look eh?   In another cruel twist, I kept my eyebrows and lashes until my hair started to come back, then they jumped ship making me look like Humpty Dumpty with my big bloated steroidy-crisps and chocolate-bread face.   I'm off to get one of those Lush shampoo bars as soon as I can.   Anyway, enough about me.    It's been really good to read your posts and to see that we're all moving through this adventure we've been thrust in to.  I'm keen to see your radiation advice too in the next few weeks.   Wx    ... View more

Hi Lassies!   For those of you booked, or considering booking, or struggling to get booked on to the Look Good Feel Better sessions run in the Macmillan centres in our various hospitals ....   On Saturday, I went to the No.7 counter in my local Boots as I heard they offer make up services for those in our select club.    I booked a slot for Tuesday at the till and received an email confirmation.  I went yesterday and was looked after by a beautiful girl.   I explained that while I still had eyebrows now, they might not stay the course and I wanted some advice on replicating them when they go.     I asked if she is involved in the LGFB sessions but she hasn't been able to get on the rota as the local co-ordinator here in Derby works in Boots (on the Clarins counter) and has lots of volunteers from the various cosmetic companies in the store.  She explained that No.7 offer free no-pressure appointments, bookable online or in-store.  If you feel self-conscious, they'll take you to a private area away from the central shop floor.   She encouraged me to come back whenever I wanted, appointment or not.   She couldn't be lovelier and there was no pressure to buy at all.    She said she'd noticed me on Saturday but didn;t want to approach me as some people are very sensitive about it.   I'd have been okay, happy even, but it's nice that they're so awake to it eh?   They have a handy gizmo that matches your skin tone to the most appropriate foundation colour and I have to say the base she used for me was possibly the nicest I've ever had on.  Really nice, I'll be buying it later I think.   I did buy some Eyelure eyebrow templates to use if they do go, just to give me a head start at getting a decent shape, only £3.    I've managed to get a LGFB session booked for October - it wasn't easy to get in, but that's another saga.  So if you can't wait 6 months for an appointment, head to your local Boots.   The girls all have MacMillan badges on.    Willie   ... View more

Hi Lal,   Can I check something with you, please?   You mention that you're having 8 cycles and that the dose is slightly lower.   Have they actually told you that?   I thought that was the case, the same dose of drugs but spread over 8 rather than 6, but then the nurses told me that it's not a lower dose just two extra cycles at full strength, just to be safe.  I asked the oncologist consultant and he confirmed it.      Also, my hair sounds like yours.  It's stopped falling out, I haven't shaved it as I thought it would all disappear and now my head looks like an 80 year man's.   I think I might have to take the clippers to it but I was scared of getting any cuts.   Living in a world of fear!!    Other than looking like an antique testicle, I can't complain so far.     Willie xx ... View more

Just checking in!    Day 6 of FEC-T Cycle #2 and all's well.    I still feel exactly the same as I did before any poison.  Only balder.  And fatter.  So, I guess not the same at all then?    But nothing bad, and that's good.    I had swollen ankles a couple of days last week and I've put on 2kg.  The nurses told me it's water retention but it's not.  It's ice cream retention, I can't get it down me quick enough.  Solero exotics.  Farmfoods bargain choc ices.  Ben & Jerry peanut butter on offer in Morrisons.   Lidl Madagscan vanilla.  The ultimate - Mackies Scottish dairy vanilla.         I've had a couple of short and disturbed nights' sleep, but hasn't everyone?  It could be the post-poison steroids but the heat is not helping.    I'm managing to do as many steps as before, 20k on Sunday, 10k before work this morning with the dog.   I'm working 9-5 - what a way to make a living! - five days a week (poison day excepted).   Not enough though to cancel all that bloody ice cream.   I'm going to freeze my gym membership and subscribe to Les Mills On Demand at home on the telly.   When it cools down!   My head is not totally bald yet, it's covered in 'bum fluff', still holding on to some of it.  I haven't plucked up courage to go naked at home when anyone is in, I'm just not ready yet.  I'm wearing scarves and bandanas and my head is boiling.    I'm trying not to tempt fate by thinking this is going okay so far.  I know it's a fragile thread and can snap at any time and I'm only just into the second cycle.  However, the nurses called me yesterday to see how I was after the weekend and they said they didn't know who was more surprised by how well I'm doing, them or me.   I have, obviously, had the same thought as others - does this mean it's not working?   The loss of my hair is showing something's working though.  I hope.   I can see varying degrees of SE's being experienced by you all.   I hope you're all doing okay.    We can do this.   Willie xx     ... View more

Hi there, checking in.     It's Day 14 for me.  Still no side effects, nothing.  I'm aware of a few hairs coming out, in my fingers, although it's not dropping out in lumps - yet.  Luckily it's really really short already, I'm happy I did that.   I've got a catch up with my oncologist today, I'm sure he'll be expecting me to trip in with a list of woes, but I've got nothing.  Well, one question.  His letter laying out my treatment said 4 FEC cycles and 4 T cycles but a document I got from the oncology nurses showing my drug list from the first chemo session and it says I'm having 6 cycles.  If I could reduce it to 6 from 8, I'd be cockahoop!   Although, then the sensible side of me says maybe I should just blitz those cells with the extra cycles.     I'm also going to try to get a definitive answer about exercise.  I don't know what I can/can't do with a picc line in.  I don't want to do anything to compromise it.   Also, I wondered if doing intensive exercise might cause a problem with blood pumping through it at an increased rate.  Anyway, I did a spin class last night and I'm still alive, for now!   willie xxx     ... View more

So, it seems my 'prison haircut' looks better on me than my previous full head of hair. Everytime I meet someone who hasn't seen it yet, they say the same.  I must've looked a right state before if a No 2 all over is an improvement!     I'm definitely going to have to put some practice in with the make-up though as I look like a geezer.  I might audition for the next James Bond.     I work from home and only go out to walk the dog or go to the gym, neither of which requires any make up at all, so I'm out of practice.   That's a job for this weekend, along with scarf tying.   Anyone got any insight into fake tan and chemo poison?  I'm a little bit apprehensive about anything chemical.  I might turn green.   Wx ... View more

Leanne17   I've jumped over from the July starters and saw your note about getting a PICC!   I made a song and dance about getting a PICC line ( I was terried as at least all of my surgeries have been when I was asleep), however, it was so easy and painless.  I am scared of needles and it's made the chemo thing (I've only had one so far, mind) really easy.   I compared having it to being an electric car, I just pull up, plug in, charge up and away we go.      I hear you about the heat, I';d rather have this whole bald thing happen in the winter when I could hide under a hat or wig but we have to play with the cards we're dealt (in the **bleep**test game of blackjack in the word!).    Willie xx   ... View more

Hi CDC   Yes, I had surgery first.  I think - I don't actually know! - that it was considered to be one small lump, removable then they'd follow up with chemo and rads.   I definitely had it in a node so they removed 17 of those but it was only in #1.   Each time they went in, they found something that hadn't been on the ultrasound, CT and MRI.   Maybe if they'd seen multiple lumps they'd have gone for chemo first, who knows?     Reconstruction was never offered to me as an option as, the way I understood it from the BC nurses, the implants get in the way of the radiation (maybe one of our champions here will have more info on that?).   I understand I could have reconstruction later - a year after rads? - but that version of reconstruction sounds tough so I'm not going to put myself through that.  To be honest, I don't need it.   I'm not 26 or 36 and I'll still wear bikinis just slightly bigger tops.     wx ... View more

Hi Daisy 200, pleased to meet you!   I'm in the town, near Darley Park/Five Lamps. I know where Draycott is.  It would be great to meet up sometime.   How are you feeling?     Do you have a dog? (I do)   W ... View more

Karen   Oh blimey, a lot to think about.   No one can tell you what to do, what choices to make, including your medical team, they wont give you any steer as it has to be your decision but here's my experience:   I was told I had a smallish lump and that lumpectomy was sufficient, with node clearance, followed by chemo and radiation.    My first surgeon said 'there's no need to lose a breast for a lump that size'.   Turned out it was 3 times bigger then the scans showed so I then needed more surgery to clear margins.  I was given the option of another lumpectomy or mastectomy.   I had found the first surgery so easy to recover from that I went for the second lumpectomy telling him to take more than the minimum.  My second surgeon said it was a 'very reasonable decision'.   Turned out there was another 2 stealth lumps not showing on scans so then I had no option but to go for a mastectomy.   If I had known how easy it was to recover from the surgery - and if I hadn't been crippled with fear, hindsight is a wonderful thing - I would have / should have gone for the single mastectomy in the first place.   Obviously, it's not pretty but I don't miss it.  However, that's just me.  Not you!   I've sailed through the surgeries (with a few hiccups).  Once you get to the operating theatre, it's all in their hands, you go to sleep and you wake up - hopefully - cancer free.  That's got to be good eh?       For me, the worst parts so far have been:   1) The fear of the unknown, I've been crying, sobbing, terrified over things that were actually okay 2) Having a drain bottle.  I had one on the first surgery, I caught the tube and it failed.  I had one on the third, big, surgery.  I took more care and it was fine but it does make you feel like a patient and can restrict your movements. Once it's gone, you feel free free free, outside world here I am. 3) The fear of needles - early days I had a few diazepam but learned to live without them.  I'm a big girl now. 4) The fear of the picc line - having it put in while awake, turned out to be fine.   It now means I drive in like an electic car, plug in, charge up, and go.  5) Not had to address this one yet but it will come soon - the looking like a cancery person.   So far, I've felt and looked the same as I always have.  Now, I'm going to be looking sick but we'll have to cross that bridge when we come to it.  This might just be the hardest bit.   Good luck with making your decision,   willie xx           ... View more

By the way, back to me, ha ha!!   I had my hair cut off, v v v short.  In my mind, I saw Katy Perry or, more age appropriately, Annie Lennox.  In the mirror, I'm seeing Daniel Craig.     The hairdresser I went to, in Derby, is an agent for Trendco the wiggy people.   She's been trained with Trevor Sorbie and cuts the wig to suit you.   I had planned on a long one but in the end went for a shorter, neck-length, one.   It's really nice but so far, I've only been out in my panama hat or with no hat at all as I do still have hair.   In fact, it's grown since Friday but it'll be on its way in the next week, I know that.   In other news, this bloody good weather is killing me.   I would normally be lying in the garden near-nekkid every spare minute of the day but I've been told to wear SPF50, keep in, cover up, avoid exposure.   The one bloody decent summer we have for years and I have to stay out of it.    wx     ... View more

Hi there, checking in again!    I've been AWOL because I've been living life and generally gadding about.   Right then.  It's six days after my #1 FEC.   I have not, yet, felt ill, tired, anything particularly negative at all.   I did start to get a tiny metallic taste the other day but it seems to have gone again.    I am aware that this could change at any time but for now I do not feel one iota different to the day before they poisoned me.  I know that I'll be tripping towards 'low immunity week' now and that I need to be careful.    My onco nurse has checked on me to see how I feel, and he seemed very surprised to hear how well I feel but it's true.     On the down-side, I've still got all my taste buds and my general feeling of well being is making me want to eat everything (bad) in sight.   Soon there will not be a icelolly or loaf of bread left in Derbyshire.    There doesn't seem to be too many new joiners compared to the previous monthly boards, am I right?    Anyway, lassies, how are you all getting on?   Wx     ... View more

Karen942,    I hope it went well, it is scary eh?  Be kind to yourself.   Wx ... View more

Another check-in.   I had a broken sleep, more to do with the heat and a fan as noisy as the large Haddon collider.  Felt as normal when I got up, walked the dog (8000 steps).  I spoke to the oncology nurse because I'd forgotten to put the Pegfilgistram syringe in the fridge yesterday.  He said it was okay.   I went to town to buy some stuff - Movicol laxatives recommended by the nurses as its very important to avoid constipation, SPF 50 (ffs), Jungle spray insect repellent as its important to avoid bites or any entry point for infections - and had my hair cut v v short.  My new hairdresser also had a wig for me which she cut to suit me.  I was worried it'd look too 'wiggy' but I walked home in it and I think it's fine.     When I got home, I was supposed to give myself the immunity boosting injection but just couldn't do it.  Gary offered and tried but I couldn't let him do it.  I called my surgery but they had no practice nurses in do I went to the hospital.  Took 3 seconds, didn't feel it.  I really am a Muppet.   I told John, the nurse, that I feel amazing today and he warned me not to overdo it or even to behave as normal as this is not a normal time.  It's a false high because of the steroids and when I stop them tomorrow things will change and its important not to go into that time without energy in the bank.  Slow down, basically.  Listen up, ladies!!!    As I have to avoid the sun, I had a little read on the sofa which turned into a 2 hour snooze, again the heat more than anything, I think.  Anyway, despite what I just said above, the dog won't walk himself and that dinner won't make or eat itself!     Take care my lovelies, I look forward to meeting you all over coming days and weeks.     Wx     ... View more

Hi all, first 'treatment' today - why does that make it sound like you're having a swanky facial?   Anyway, picc line was a blessing, administering the drugs was v quick, painless and stress free.   Had lunch and out in 3 hours.     I walked the dog, cooked the dinner, it's 23.00 and I'm not super tired yet but that might be the steroid buzz.  I was told it would have worn off by now.    Tomorrow and the next week will be a steep learning curve for me but, for now, it's all good.      ... View more

Good luck Karen, I hope you find it as easy as I have so far.   All the best.    Willie ... View more

Hi everyone, just checking in to let you know how it went.     I got there at around 10.10, had to go through some formalities, double check and sign the consent form again.  I had the pics line checked and some steroids and anti sickness drugs given to me.   We got cracking with the serious drugs around 11.30.  I thought it might be a boring old process for Gary, my OH, to sit through so I sent him off to the gym.    Dr Pollyanna had told me the treatment took 1-1.5 hours but the nurses, again, had rolled their eyes so assumed that was wrong.  Turns out he was right, in theory.   The first drug, the E in FEC, went in first, took 10 mins, very gentle.   Then the other two lots of drugs went in and we were done in about 50 mins in total.  Dr Pollyanna, I apologise for my cynicism.     I had some lunch and was home just after 1.00.     It's now 22.45 and I feel fine so far, been out for a walk with the dog, made the dinner and now I'm social mediating.  I'm assuming the next few days will be interesting.     Night night folks.   Wx             ... View more