Hi Debra,
So sorry to hear how your feeling and like Amber has said, completely understand where your coming from.
You are doing all you can its not an easy road and with everything else losing your hair is such a huge thing. I too am dreading it but hope to do the same as a few others…try n take control when the time comes and fingers up to this crap…it aint gonna get the better of us!!!
I hope that with support, understanding and lots of rest your spirits are lifted, we do know how you must be feeling especially as you are cold capping (many of us are not) we are thinking about you and wishing you the best outcome - huge hug Debs!
Hang in there, lots of love
Lori xx
Hi Ladies
Thanks for all your good wishes this morning, just a quick check in before i head off for Hickman and Chemo (not a very funny act :))
Lori, Amber, Debra - hope you are all still doing ok, I’ll be joining the bandwagon soon no doubt. It really does make it easier when you at least know what s/e’s may be like albeit everyone will be different
Mamakaz - I can’t believe you are not entitled to any benefits ? I know some people are entitled to benefits even when they are still getting a full time wage (it’s so wrong) - I’m sure the macmillan website has some good info on benefits etc which may be helpful. Also, if you scroll back a few pages I’m sure Linda posted a link to all the various chemo protocals and S/Es which should help
Angiepops - may be too late but I am getting the chest line (hickman) as I don’t have any veins! I think the line in the arm is a Picc line and this needs to feed in through a vein in your arm
Keeley93 - well done onjoining for your mum (I would def have to do the same if it was my mum 
- i’m sure you will find lots of help and support
Welcome to all the other new ladies
Pauline xx
Hi Debra, do you have a key worker for BC at your hospital to talk to. I had to go to mine after feeling really low and going to the docs twice with headaches and tummy aches. Lost half a stone in a week already and I havnt started yet. All boiled down to me worrying and getting no sleep I think (not got scan results back yet). Doc gave me something to help me sleep which is ok with chemo. Feel alot better. Ring BCC to for surpport. Hope you feel better tommorrow. xxx
Good morning all AAAs
thank you for such a warm welcome to your group.
Pauline - I hope all goes well today.
To all of you that have already started your treatment I hope that your SEs continue to be manageable.
Kate I had a porta cath fitted last week it was a bit uncomfortable but the bruising has started to go down now and I am assured by those in the know that it will be a godsend when I start my chemo on 16 apr! I have already chopped my hair was way below my shoulders and is now in a short bob and my neck is still very cold! I too am hoping to go wig shopping with my sister this week - well there’s a sentence I thought I would never write.
Are any of you ladies using or going to try the cold cap? I am planning to give it a go but notsure I will be able stand it - any tips gratefully received!
I hope you all have a good day - decorating my daughters bedroom today so I would imagine we will all be covered in paint by this evening!
Jo
xxxxx
hi first time on the forum, had second lot of surgery at the end of March like you lymph nodes just been removed and more of a margin around where the lump was seeing consultant tomorrow. At an earlier appointment they said chemo will start 6 weeks after surgery. So I guess I may be there with you! Jo
Just got back from hospital after having pre chemo chat. Arrived in chemo unit only to be told that I wouldn’t be having the Herceptin today because the pharmacy need 48 hours notice. So why did I go to be weighed, height mesured, bloods done nearly 2 weeks ago?? Also, was told that I was having Docetaxel instead of Paclitaxel - i was given the wrong information when I saw the Onc!! As if this isn’t stressful enough, had very little sleep last night and got myself all worked up for nothing and will probably do the same on Tuesday night as I am now having the herceptin on Weds and chemo on Thurs!! 
Linda - thanks for the info on the echo and portacath. You’ve put my mind at rest! It made me laugh when you said about the injection prior to the portacath fitting being like the dentist ones. I had to have a tooth out last week (well it was either that or several visits for a root canal). I am phobic about the dentist and had a load of anaesthetic injections before he took it out, so anything after that will be fine in comparison 
Primrosehill - so glad to hear you are starting to feel better!
Had a lovely weekend away in Luxembourg this weekend (its only a few hours drive from where we live), to do something fun before stuff starts kicking in.
I’m now thinking I need a couple more hats and scarves . I bought a couple of silk hats and “fitted” scarves (the heavier silk, not chiffony silk) but now I am thinking for everyday around the house that perhaps some sort of jersey beany and a nice small scarf to tie around it might be more user friendly for rougher days. Any recommendations?
Hope everyone is doing well!!
xx
Hi Ladies,
Mamakaz - did I spot you disappearing through the door after your pre-chemo chat? I wondered if it was you and why you were off out! What a shambles, and so much unecessary stress you could have done without. I saw the onc (registrar) last Tuesday to sign the amended consent form. He wrote down Docetaxel but said out loud Paclitaxel. I queried it, and was told there is nothing to chose between them, they are both taxanes and do the same job. I think I am on the Docetaxel - that’s what I signed for anyway! Good luck Wednesday and Thursday. If your Herceptin goes as well as mine you will be fine.
I got off the starting block today with my Herceptin loading dose. The portacath worked beautifully. When she was inserting the needle she said “all done” and I was still waiting for her to do it! Totally painless.
The infusion was also totally painfree and comfortable. I had some saline in first whilst waiting for the Herceptin to arrive from the pharmacy, then 90 minutes of Herceptin followed by another 90 minutes of saline (they have to keep you behind 90 mins after your first Herceptin to make sure you don’t have a reaction.) Then home. I’ve been home about 2 hours and so far so good.
The dreaded Tax and Carboplatin tomorrow. Yuk.
Is there anyone else on this thread having the same regime as me? TCH (Taxotere/Carboplatin/Herceptin) apart from Mamakaz and Wendy?
Hope everyone is doing well, and please take care, Linda xxx
Hi Ladies
Thats me back after hickman fitting and 1st chemo. Hickman was ok, took about 20 mins and a bit stingy when they put the anaesthetic in but apart from that it was fine. The line made a big difference when getting the chemo, no messing about for veins and straight in. Took about 90 minutes to get the saline, anti sickness drip and the chemo so not too bad. Feel fine at the moment just got pink pee - nothing else so far
Spudgirl - I got some lovely scarves from scarf hut and bohemia
take care all
Pauline xx
Hi all
What a busy day for so many of you! Glad the Hickman fitting and 1st chemo went well, Pauline**. I’ve had some problems with my port so went to hospital for a chest x-ray to make sure everything was ok with it; fortunately, it is, and as an added bonus I met Linda** while I was there - great to speak rather than message.
Lori, Amber, Debra and Primrose Hill - hope you are all doing ok, physically and psychologically. This is such a hard trip, isn’t it? We really must be kind to ourselves…
Mamakaz - I’m in Burnley this week for Herecptin (Wednesday) and TC (Thursday) so we may meet.
Have a lovely evening
Wendy x
Glad it went well for you today Pauline, yes the ‘pink wee’ strange where we get our entertainment while on this stuff!!! I hope you have an easy time with the SE’s - good luck!
I think the casting of hair has started for me…it’s day 13 of cycle 1 and constantly finding stray hairs on my shoulders…yikes!! Thankfully I have thick hair so may take a while…fingers crossed!!
Went for my CT scan today, had trouble finding a vein to get the dye into me…got there in the end, must try and keep left arm/hand really warm for next cycle or I too might need port fitted - time will tell!
Hope everyone doing ok today!
Love Lori xx
Hi Wendy - it was defo an added bonus meeting you and your OH. Hope the port and problems settle down. It would be great if we could all have our second session at the same time. xxx
Well done Pauline on the Hickman and first chemo. Good luck with the side effects. What regime are you on?
It helps if everyone put the regime/cycle number/day number on their post as we are on different regimes and side effects aren’t necessarily the same.
Hi Everyone
Fec-t cycle 1 day 7
Day 7 in the chemo castle!
Feeling a bit spaced out today so will keep this short. Slept until 7.20 this morning so great no meds required early doors. Felt really good until lunchtime when I moved into another planeI, but hey I can live with this.
Glad everything went ok Pauline, hope s/e won’t be too bad
Linda, good you’ve got started, will be thinking of you tomorrow
Mamakaz, what a day, no one needs that extra stress, hope all goes well wed/thurs
Spudgirl, glad you enjoyed your time away, nice to have a break before chemo starts
Lori, Iam getting a bit paranoid now waiting for the inevitable, woke up in the night and was convinced my scalped ached but its too early yet I think
Hope you all have a nice evening xxxx
JoK72 - You might find the Calling all Cold Cappers thread useful when considering the cold cap.
I have been using it and am cautiously optimistic that it is working well for me! I am on FEC 75 x 6 - I had FEC 4 today and as of now, I have a full head of hair. IT has thinned on top a bit, but so far I’ve not needed to wear my wig and look relatively normal!
A tip if you do decide to use the CC - the first 15-20 minutes when scalp in being cooled to the right temperature before they start your chemo can be uncomfortable, sometimes painful, but don’t be put off by this, if you stick with it, the pain eases and once you get used to it, it’s fine. So grit your teeth and stick with it. I am sure you will find it was worth it.
For me, keeping my hair is helping me through the treatment and is well worth the extra time spent in the chemo unit and the little bit of discomfort while the CC cools the scalp. Being able to go out - on good days - without faffing about with wigs etc, is so much easier. I have had to adopt a much more casual look (no styling or colouring so roots are showing through a bit now) but being ash blond anyway, it doesn’t show too much - and I am prepared to live with it if it means at the end of treatment I don’t have to wait for hair to grow back, which can take months. On good days it also means I can go out and look relatively normal, not obviously like a cancer patient and this is important for me (and the type of work that I do - I am often out meeting clients).
The other thing to be aware of if you opt to try the CC is to expect to lose some hair - everybody does to varying degrees. For me, I shed a little every day, more than when not on chemo, but not a huge amount. I shed the most at 21 days post FEC1 and at that point went into panic mode thinking the CC wasn’t working for me! Having read various comments on the forum, I decided to persevere with it - and I’m so glad I did, 'cos the hair shed since then has been much much less. I was told by the Hair care nurse that you can expect to lose about 30 pc of hair with the CC, but often less. I have probably lost about 15 pc, mostly from the crown, but still have a good covering all over, with no bald patches - yet! I say this with some caution as I still have a further 2 FEC chemo’s to go. fingers crossed!
I would advise anyone to try the CC and to persevere with it. For me it has been so worth it, good luck whatever you decide to do. XXX
Well today has been a day of sorting out appointments and trying on wigs! I was very surprised at how easy to find one that suited me, got a fitting and styling appointment that my OH can go to with me later in April so I’ll be ready for the hair loss. i have opted for not trying cc as having AC and Tax and cc doesn’t have a good success rate with Tax so not bothering. The appointments I now have are for my chemo info session and pre-op assessment on Wed ready for portacath installation on Thursday under GA…not sure why GA as I keep seeng others have had it hem installed under local so I will be asking again why! Then Wednesday 17th is my first dose of AC, bit apprehensive but as I’ve been very well since my mastectomy 2 weeks ago I’m hoping I’ll be okay.
Hope you have all had as good a day as you can and that the sun was shining wherever you are
Kate
xx
Well done everyone for getting through their first cycle. Despite the SEs you all sound so positive. I’m getting a bit nervous now as I will have my first cycle on Wednesday. It sounds like most of you have had a portocath. Has anyone had the infusion given through a canula?
Kate - I had heard via several posts on this forum that CC may not work so well with Tax so I can see why you have opted not to use the CC. Best of luck with your treatment and also with your portocath fitting.
I had a Portocath fitted just before my second chemo under local. It was a bit uncomfortable being fitted, but not painful and I wouldn’t have thought a GA was necessary, unless the ONC/doctor decides on what each individual patient should have according to their medical needs. All the literature I’ve seen says Portocath s can be fitted either by local or GA, so it may just be decided on an individual basis.
Having a portocath fitted has turned out to be very good decision…no more hunting for non-existant veins and completely painless chemo infusions!
Hope all goes well for you and that your SE’s from treatment are minimal. . XX
Hi everyone,
well done to everyone who have completed their first cycle, and thank you for sharing your experiences of se’s it has really helped me to prepare for my first cycle on the 16th.
I’m having a pampering day tomorrow…having a facial and manicure followed by having a shorter haircut. Has anyone else heard that chemo can badly affect your nails?? this has really upset me far more than the thought of losing my hair, how silly is that? I can’t remember when I last had short nails or didn’t wear nail varnish!
Mel A - I Assume I’m having my infusion by cannula as I haven’t been told anything different. I’ve got my induction day at the chemo centre on Thursday so I will ask then.
Kim
FEC-T : Cycle 1 - Day 13
Hi Amber,
I did go through a day or so when my scalp ached too but no hair loss then. Today has been the starting point, I’m getting a slight tingly/itchy feeling all over scalp and constantly picking stray hairs off my clothes. My hairdresser is on holiday until 14th…so dont know how much I will lose before I get my head shaved - my OH may have to take up the challenge…it will be payback for all the hair cuts I have given him over the years!!!
Hang in there,
Love Lori x
Another day, but it’s not sunny today, hopefully you all have sun some way or another!
mejane, thanks for the info, great to hear you like the portacath. I already have a saline port for my expander implant so hope they use the right one at the right time! LOL
lori28, I asked my OH if he would shave my head when the time came but he was too scared even though I’ve done his hair for years and years! He didn’t want any payback on this occasion
Kate
xx