Sorry Barry that should say GP
Morning. I think Nikki will give her gp a call. Should I get the flu jab too? Yeah we got the impression they give you different drugs as a result of any SE rather than prevention but we could be wrong x
Morning all me again! I find it hard to understand all the different chemo drugs! I’ve been told I’m having docetaxel and carboplatin is this the same as everyone else?? I was diagnosed on 18th June lump removed and wound eventually healing… To date I have not had 1 conversation with my bc nurse about chemo or wigs or list of things I need reading everyone’s post I now feel so unprepared.
Sarah what is the liposil you mentioned for lashes and brows? Where did you get it?
Hope you’re still doing well , I’ve no 2 on Thursday time has gone fairly quickly! Hugs to all xxxxx
Marie, do you have your start date for the chemo yet? I start a week next Friday and have only met the oncologist so far. The lists of useful things to be prepared with I’ve only had from the good people on this site and not from an official source. My chemo nurse was on holiday last week and is supposed to be contacting me when she is back tomorrow so I guess I’ll find out more then - hope so anyway. I’ve not had the chance to talk about cold capping or anything yet.
I’ve not heard of carboplatin and it’s not part of my regime. Perhaps you have been described a different drug because of other health issues. You mentioned you have had anyurisms in the past (my husband has had one of these). Why not give your BCN a call and see if she can shed any light on it for you if only to ease any concerns you have. I’m terrible about calling and bothering mine but it does help if you have any questions. I’ve a big list to ask mine tomorrow.
Hope you are doing okay.
xx
Hi all, my first chemo was 26 October 2014, don’t panic, before your first chemo you will see/go to the chemo unit where they will show you around and chat through what to expect and side effects.
Your chemo unit also arrange for you to see the wig people. They came to my unit on a set day
y and you just need to ask your chemo nurse to make you an appointment. You get £75 towards a wig as a minimum but my NHS
trust provided more, so I got a £200 wig free. If this doesn’t happen in your trust don’t forget to claim back 1/2 the money on a health plan if you have one. I’m in simply health and also claimed money for each chemo session and you also get 1/2 your money back on mastectomy bras just send in the receipts. Also don’t forget to ask for the VAT taking off at the till too. (Debenham have done this pre so you pay the sticker price, but ask at M&S etc as not all sales assistants know to do it)
The only things i bought and used were a good moisturiser for all over use, any brand is fine the key is to use it religiously twice a day. Hand cream, Manuka honey nail cuticle oil from Holland & Barratt. Disposable gloves from pound shop put on when washing up cleaning bathroom, under gardening gloves etc. High fluoride toothpaste and a new child’s toothbrush for each chemo cycle. Lip balm. Ph neutral paraben free shampoo & separate conditioner if using cold cap. A thermometer (some hospitals provide one but mine didnt) I bought a cheap ear one. My final purchase and used regularly were glycerin suppository, the hospital/GP can give you laxatives but you sometimes need a little help from the appropriate end for want of a better expression.
I don’t want to discuss side effects as everyone is different but again I would keep a symptom diary to take to your oncology appointment or next chemo session and then the medical staff can prescribe drugs to alleviate the symptoms.
If you suffer badly from travel sickness morning sickness it may be worth asking for a drug called Emmend it isn’t a standard drug and is reserved for worst sickness issues so your oncologist may not prescribe it but it worked for me.
Chemo is hard but there will be amusing moments too. I didn’t stop going out seeing friends having meals out etc, and in fact getting fresh air is good even if it’s just walking to the end of the street. You will also gain an encyclopaedic knowledge of local places to get coffee.
Take care all, use the forum and share your experiences with each other it really is a good support and helps you to feel you are not alone xx
The only thing I will say is don’t put up with something for me the main problem was nausea and sickness and after several drug changes I got a combination that worked
Hi shazza I’ve used Talika I’m pretty sure I bought it from amazon it’s a bit pricey but so far so good. I still have my eyebrows and eyelashes and my friend kept Hers all the way through. I’m good day 11 FEC 2. How are you all doing today ? Xxxxx
Ohh, think I’ll have to add that to my list Sarah - I’m far more concerned about my brows than my head hair oddly enough. I think because I’ve heard more people say their brows took the longest to get back to normal. Did meet someone with great tattooed eyebrows last week though. They looked incredibly natural.
Glad to hear you are feeling good on day 11. You always sound so chipper and give me lots of hope. :smileyhappy:
Thanks for that Sarah I’ll defiantly look into getting that! Glad to hear you’re doing so well! I’m day 19 and felling well,second fec on Thursday. Enjoy the sunshine I’m going to meet a friend for lunch. Hugs to all! Xxxx
Hi all, first chemo on Weds this week so reading everyone’s comments with interest. I’m 47, live in Brighton, 3 kids (in their teens/early twenties). Diagnosed early July after I found a lump; WLE and SNB mid-Aug, grade 3 ductal (plus DCIS plus tiny lobular, all hormone positive but HER2 neg). Luckily they got clear margins and nodes were clear, but because it was quite aggressive and I’m relatively ‘young’ (first time I’ve counted as young for a long while!) I’m having chemo. 4 cycles of AC which doesn’t seem to be as common on here as other regimes, though the chemo nurse at my induction said it’s not unusual. I have one question so far…when people talk about Ph neutral shampoo…what brands are those? I bought baby shampoo thinking that would be gentle, but not sure that’s actually ph neutral or parabens free? I’m not cold capping so fully expecting to lose all my hair (had it cut short from its usual very long in preparation) but wanting to look after it before then and when it starts to grow back! Any recommendations gladly received, and good luck everyone! It’s all such a big unknown…I’m guessing it’s probably a bit like childbirth in that you have no idea what it’s like until you’ve been through it, it’s different for everyone, and you can’t then really explain the enormity of it to others anyway?
Hi all hope all having a good day! peggycat no date yet for chemo to start waiting on scan results to check aneurysms…oncologist did say though we have to start before 12 weeks since op and I’m on 8 weeks now… I feel better now I know you also have only seen oncologist so far…bcn will be ringing me today so I’m going to have a chat with her thanks for you help. Have a nice day!!
Hi all,
Just a couple of quick questions you might be able to help me with, firstly I know I am not supposed to have needles stuck in my bad arm, but what about a blood pressure cuff, usually if you have a needle/cannula in one arm they tend to put the cuff on the opposite, I’ve read conflicting things. Secondly I’ve got my chemo induction/ new patient interview on Weds, in your experiences how long after this appointment does the treatment tend to start. I may post on September also, as a lot of you may still be like me and still waiting. Thank you xxx
Janey the needle they use for your chemo is usually in your hand so they can do your blood pressure normaly but they only tend to do it once at the start of the session.
I ended up with a PICC line as my veins were not good enough.
My pre session was on the Friday and I started chemo on the following Monday, but will depend how busy your unit is.
For the person asking about shampoo I used Herbal Essences 0% range but others used simple. When you read the bottle it will say paraben free.
Evening all and welcome Ele J.
Marie, hope you got through to your BCN and things are a bit clearer.
Peta, thanks for your eyebrow experiences. I really am not going to worry about the loss of any hair further South than my head I can assure you. :smileyvery-happy:
I am booked on a Look Good Feel Better session in a few weeks but it’s only five days after my first chemo so I’m a bit worried I’ll be fit for it - what do you think? I know the sessions are in high demand and don’t want to take a place that someone else can use if I’m not in a fit state. I also have my NHS free prescription card too. I was told they can take around six weeks to come through but was lucky and got mine in ten days so I’d say go for it asap. Your GP or BCN can give you the form - just make sure they don’t forget to put the official stamp on it for you.
xx
Evening ladies and hi peggycat
No call from bcn today but nothing new there I hate that I feel so insupported but I do:-(
I also got the dates of the look good feel better workshops today but felt that maybe I’m being a bit premature and I should let someone else have the space until I’ve started chemo and really need it.
Someone told me today I should make a claim for PIP but had a look at criteria and it’s hard to predict how chemistry going to be so not sure what to do? We have free prescriptions and parking at hospitals in Wales and I intend to try and work as much as I can with chemo so not sure if I should make claim or not…
Hope your all having a nice evening! Xxx
Sorry that should say how chemo going to affect me!!
Thanks Hopalong, looks like baby shampoo in UK is parabens free too but I might try simple as seems less chemical somehow!
Hi everyone. I’m Glenda from Coventry. I have 3 children, 8 grandchildren and a wonderful husband. I had my mastectomy on July 27th . Although not quite October I start my chemo today. I’m about as ready as I can be so come on chemo do your worse. Good luck to you all about to embark on this journey.
Hi Glenda. All the best for your first session x
Good luck today Glenda. x