hi amber d
you must be at the same hospital as me ,
angiex
Hi AAA’s,
TCH (Taxotere/Carboplatin/Herceptin) starting 8th April. East Lancs area.
I have been a member of the February Valentines since January, but needed a second operation so chemo was delayed. I am now starting in April, so may I please join you in addition to the Valentines? Grade 3 IDC with high grade DCIS, 15mm, clear nodes, lumpectomy, SNB, then a cavity shave to get a bigger margin on one side. Hormone negative. HER2-positive.
I had my ECHO heart scan today (some have ECHO scans and some have MUGA scans, both give similar data about your heart function although the procedure is very different). No problems, my heart is healthy.
Because I am on Herceptin for 12 months my onc has arranged for me to have a portacath fitted. He says this is automatic at my hospital for Herceptin people. The “chemo only” patients have PICC lines. Mine is being fitted on 3rd April. Then all systems go for the Herceptin on 8th April and Taxotere/Carboplatin chemo on 9th April.
I am a person who needs to be in control of things, so have done vast amounts of research on my own personal diagnosis and treatment. Being on the Valentines thread I have gained a lot of information, tips and advice from their experiences and feel as prepared as it’s possible to be to face this journey. However, I will probably crumble into a wobbling mass of jelly when the time actually arrives!
Linda xxx
Morning Girls,
its freezing here but no snow
Welcome Linda, good to have another AAA for support, your knowledge will be invaluable. Been dipping in and out of the Valentines, they’re a great bunch, love Kaths poems.
Angie- your way further north than me, Iam guessing you’ll be going to Raigmore. We’re under Grampian so Iam Aberdeen, but Iam getting my chemo at home, it’s a minimum 3hr round trip on a good day. I have bought my wig too, it’s my bit of security as losing my hair is a biggy for me but I feel Iam taking a bit of control now. This site is great, anything you want to know somebody will have an answer and we’re all going through this together so are here for each other.
have a good day xxx
Hi Pauline,
So sorry to hear about your dad, I am sure you will be a great support for each other.
Good luck today with onco apt. I like you have opted to have my treatment NHS although I do have private ins.
My experience so far has been very positive and have been given timely apointments so I am very happy to continue with NHS. Be aware that there may be a cash claim to be made from your private medical ins company even though you are receiving treatment on NHS - it is worth looking into especially if you are on no or reduced pay while off work.
I was scheduled for additional scans by my oncogist for CT, Heart and Bone. I am due to start my Chemo on 27th March after all (I thought this may have been delayed until April as I still have a little healing to do from mastectomy). Sure they know whats best!
I hope to still keep up with this page even alghough I have a head start of 1st Chemo next Wednesday…yikes!!
Keep you all posted…
Lori x
Hi all,
Glad we all seem to be hearing about treatment started (only glad, because sooner it starts hopefully- the sooner it will end!)
I have seen the oncologist now, but still await a start date! Finally I found out that I am ER+, didn’t say about HER or PR, so have no clue- do know I have to have chemo- the FEC cocktail x6 followed by 5 years of tamoxifen!
My hospital fits either a PICC or Hickman line as standard and as I have a young daughter I am going for the Hickman line- at the moment they are saying that will be put in on the 4th April, but they may have to bring it forward if my chemo start date is earlier!
Didn’t have any scans or haven’t been told I need anything pre chemo except bloods and an ECG, am a bit apprehensive about never having had any scans as I have really achy bones I have never had before! But I am sure they know what they are doing- I didnt have any affected nodes- so hopefully the cancer has not escaped anywhere.
I am taking my daughter awayovernight to give us a little fun before the dreaded chemo starts this evening!
I hope everyone is feeling as ok as they can and is making the best (possible) of the time beoifre starting the chemo, that’s the only thing keeping me sane!
Have a nice weekend all, if you can! x x x
hi girls
when i spoke to my bcn yesterday she advised me to take control of the chemo and shave my head instead of letting my hair fall out, she did say that my cocktail is certain to make me lose my hair and that it will grow back more even than if it falls out as well.
has anyone else had similar advice, ive already sent for a wig to try out because i want to get back to work.
angie.
Hi Angiepops,
It has been mentioned about shaving my head earlier rather than later but to be honest I have aleady had two haircuts in prep for this chemo so until I at least get my wig I am going to hang fire…Wig shopping planned for Saturday!
I will be on Fec-T initially which is due to start next Wed, my oncologist has advised that I should start to lose my hair 10-14 days after 1st treatment.
Fortunately, I have a really great hairdresser who has said when the time comes she will pop round to my house with her clippers and if I have my wig at the same time she will make any modifications required to that.
The best advise i have is ‘Don’t go there till you get there’ we all have so many things to consider, process and deall with and I find the ‘one step at a time’ approach works best for me.
Good luck
Lori
Hi Angie,
Your nurse is very wise.
I took control of my own hair last week. I went to the hairdresser and had a short back and sides - it’s about an inch on the top, shorter on the sides and back. I took my beenie hat along to wear when I left! It was a big shock - not the shortness, but the grey. I am 100% grey but have never seen myself grey as I always have it coloured. I am now well and truly over the shock and have grown to almost like it! Certainly great to get out of bed in a morning and go! Not even a comb is needed! I also bought some clippers as we didn’t have any, and am now resdy to shave the lot off as soon as the fall out begins. I have a wig and some hats. I have worn the wig several times in public to get used to it - I am wearing it in my avatar pic. I feel in control, and am much less likely to be traumatised when the time comes. I can think of nothing worse than going from a full head of hair to none at all all at once.
As for eyebrows, you can get real hair false ones now that are self adhesive, and aren’t expensive. I haven’t seen them for real though so can’t comment on how they look.
I am also happy with the NHS. They don’t waste any time with cancer cases, and the breast cancer protocols seem excellent - there is a lot of money thrown at it. Sometimes the communication between departments is a bit lacking, especially if more than one hospital is involved, but all it needs is keeping an eye on, and I would do that anyway.
Linda xx
Hi AAAs
Angie - I haven’t had that direct advice however, having read lots of posts from previous threads my plan is to shave my hair off at the first sign of loss. I think that will be around 5-10 days after 1st chemo session. Think it might start with a sore scalp so will have the razor ready at that point!!
Can anyone suggest some good websites for head gear? There are loads out there and not sure which ones are the best. I intend having a good look over the next couple days and getting some orders in so I will let you all know if I find any good ones. I wasn’t planning to get a wig to be honest as think I will be happy with scarves/ hats etc (there are some gorgeous combinations)however, my Onc says I will get a prescription for one so I might as well get one 
Also have any of you looked into the ‘look good feel good’ classes? Apparently really good and help with makeup etc for when you are a baldy! I’m just wondering when the best time to go is i.e. before or during hair loss?
Anyway, have a great weekend
Remember - Friday night is wine night
Pauline xx
Lori - sorry meant to say in last post, thanks for advice on Ins - will def check that one out! And good luck for Weds, keep us posted - you are the trailblazer for the AAAs!!!
Linda - welcome, I’ve seen some of your posts on the Valentine’s site - think you will be our Oracle
Pauline xx
Hello Linda, glad to hear that your heart scan was clear, and that you are now good to go. Let us know how things go with the portacath won’t you? I’m having Herceptin too, its a bit mind-blowing the idea of having it for a year. 
I’ve been following the Valentines thread on and off as well and even though none of us want to be here, its great to be in a position to support each other.
Zuzy, hope things are going okay for you today and that you get home this evening.
Hello to everyone else, I was reading through posts earlier this morning but when I tried to reply I couldn’t log in, and now I’ve lost the plot a bit.
I bowled up to the hospital today for what I thought would be a mere formality of meeting with the consultant and referral to the oncologist, but I should have known something was afoot when they left me for ages to get undressed before checking my wound. I expect they were fighting over who got to tell me the bad news! Its all healing brilliantly and the surgeon did a fab job, particularly considering my nipple has been moved twice now…but they still haven’t got clear margins so now I have to decide whether to go for it again or go straight to mx.
So a bit more delay for me…I hope this doesn’t mean getting bumped from the ‘Angels’!
Deborah
Pauline, I wondered the same thing about ‘Look good feel good’. I looked on the website but couldn’t see how to register or ask for an invite, perhaps that comes later via the hospital?
I’m not keen on a wig either, but I was thinking of getting a few hats. AnnaBandana and Suburban Turban and Ebay have been mentioned on other threads and I’m sure there are other sites out there.
Hi all,
Don’t know if any of you have seen this (sorry I haven’t checked through every post to check!)
Its a link to a website for head wear and they have money off through March- just thought it might be good for someone! x
randrconfidence.co.uk/Home.html
Hi ladies!
Back up and running after 2nd op on Wednesday and seriously hoping to get clear margins this time when I go back on 2nd April. Wasn’t sure whether to go back to beginning with excersises or carry on with week 2 - in the end I am doing what feels comfortable, working arm without putting strain on boob and have added a few lunges for good measure! All numbness under arm has gone now (5 nodes positive out of 12 and had it took 2 surgeons to find them!) so a bit sore. Got CT scan on chest, torso and pelvis area on 5th and bone scan to come. Absolutely terrified they will find it somewhere else.
Luckily I can work from home, but can’t keep my mind on things. Feeling quite agitated today actually, but lovely to have my daughter home from uni for easter.
So if I have clearance I am guessing I will start 6 x chemo towards the end of April but obviously not seen oncologist yet. Have got the number for a wig lady (Julie Veazey in Maidenhead is apparently very, very good), need to get the hair cut quite a bit shorter asap as there is so much of it, and will get rid at first sign of loss like you Pauline. Apart from that, dental check and flu jab booked!
I will now go back and read how all you other AAAs are doing! Deborah, that’s a tough decision. If we get bumped, I am thinking Amazing May Maidens!!
Nicki xx
Hi Nicki, sounds like you’re recovering fast. Amazing that the numbness has gone. Mine has improved a lot, but it stills feels very weird when I touch it. I’ve had CT and bone scans, and they turned them round quickly and in fact my nurse gave me the results rather than waiting for consultant so hopefully you won’t have too long to wait either. Fingers crossed for you.
I’ve had my hair cut v short too now, and have dentist booked for Monday. I feel like I’m having a complete overhaul!
Deborah
Thanks Deborah
Yes, recovery much quicker as I guess less anaesthetic this time and no involvement under arm. It’s two weeks since first op and I can definitely feel armpit so the block thing they put in must have worn off. It doesn’t look very nice though but hoping that’s still swelling and quite ironic that I am desperate to shave under there!
That’s great you got the results on other scans so quickly, it must have been a great relief to know everything else is OK.
This whole process does seem to give us a full MOT before mayhem breaks loose, and I am pleased to say that (although only a social smoker really) I have now given up! The wine is definitely not going though, and I read somewhere that cava is good during chemo?
Nicki
hi all,
my nurse came today and i told her about the hair and wig thing and she said we have a local support group for the bald stage, must be like the ‘look good feel good’ thing, but only the medical people seem to know about it and they tell each patient individually so maybe the bcn’s are the ones that know where these things are.
re the wig, ive looked on ebay and seen some very nice inexpensive ‘hairy hats’
angie x
Pauline, I’m on Fec T, had Fec 3 yesterday. Haven’t had any problems really, no sickness, although on the odd occasion I’ve taken anti sickness pills just in case, but didn’t really need them. Had oral thrush though, and a burning acid stomach. Onco has given me tablets for both these this time, so fingers crossed. I found Fec easier than I’d expected, so now, on to the adventures of Tax.
Amber, glad you like the poems. New one going on sometime today.
Linda, does this mean you’re leaving the Valentines? Hope not, your knowledge is invaluable. xxx
Good luck AAAs who have their starting date.
Kath xxx
sorry I meant to add I live in Beadnell in Northumberland
Hi all AAAs can I join the gang please? I had my results today and doc said node biopsy was clear and my large lump (51mm) he removed was clear at the edges so in a way its good news. I am to have 8 sessions of chemo at 3wk intervals then rads and tablets. I have to see the onc who will explain everything he didnt say when . I have been trying to read all your letters but am getting really muddled up with things I dont really understand Im 69 and I think my mind is starting to wander a bit (lol)