Good luck today Moira and Mel
Kim x
FEC-T Cycle 3 Day 1 - Half Way Happy Dance!!!
Morning ladies,
Hope you are getting all your anti-sicknes drugs sorted, that seems to be the most miserable se now that the hair loss is thing of the past for most!!
Best of luck to all just started or about to start next cycle this week…another step forward and box ticked!
I did not have a great start to 3rd cycle infusion…I have no port/line fitted and it appears my veins are not liking one of the FEC drugs Epirubicin (pink one) vein started to contract and close down so after several attempts, 3 alternative veins and over 4 hours later infusion was complete…a bit stressful and uncomfortable but got there in the end.
Been feing ok since (fingers crossed for that to continue!) Just waiting on nurse coming to administer Neulasta which after checking with onco unit is what is causing my aches n pains sat-sun…hey ho just need to top up on paracetamol and hope for the best.
Looks like we have a bit of sunshine here today although it prob wont last I’m sure…roll on summer!
Hope today finds you all well,
Love Lori x
Morning girls,
hoping Angie you soon feel better, and that all cycles are going well.
just need some advice! I am on day 4 cycle 2 FEC. I take all my drugs to day 3 and then day 4 try to come off them, but find if I don’t take the domperidone for at to east 3 more days I get migraines? Anyone else finding this?
Hi all my name is barbara I started fec on 22nd april will hopefully have fec 2 on may14 would love 2 join the angels
Hi all
slept for 13 hours last night! getting stocked up on sleep before I start the steroids again.
Lori I’m on Epirubicin and was told it’s very common for it to make your veins give up. That’s why they recommended a PICC line. sounds like you had a stressful time, but another one down! 
Have a good day everyone
mel x
Lori - love the half way happy dance, I’ve got another 2 before I get to half way but I’m quarter of the way through so still quite happy! Are they going to fit you a port or a picc line to reduce the problems for the next 3?
Mel - you obviously needed the sleep so take it while you can! I seem to be doing that at the moment and having 30 mins to an hours nap each afternoon 
Philomena - I don’t have any problems when stopping the drugs after 3 days - apart from getting more sleep after the steroid effect has worn off! Are you drinking more than usual as I was told that dehydration can be caused by some of the drugs so to make sure I drink lots more than normal, wine is not included in this quantity apparently! 
Angie - hope you have managed to get some more anti-sickness and are feeling a bit better today.
My original stubble seems to have fallen out but has been replaced by new stubble which isn’t as rough, think this is the new growth but assume it will fall out next cycle too! Is anyone else showing new growth? My eyebrows and eyelashes seem to be staying in place quite happily so not sure what’s going on!
Off to see the ONC shortly…fingers crossed they know what the hormone statuses are now and can get a plan for that too!
Kate
x
good luck with the onc Kate
Mel x
Welcome to the crew Barbara. sorry you find yourself here, but we’re a friendly bunch and the support is helping me enormously. 
Good afternoon Angels,
'Fraid I had a bit of a melt down in the chemo room this morning. Not good shedding tears in front of the other five women and assorted nuses who were there but at least I got to see the head chemo nurse who reassured me that my issues were as important as anyone else’s. I had two gripes: first my chemo nurse asked me if I’d seen the onc so I told her no, my first appointment isn’t till 22 May. I’d asked to change it because it’s in the middle of my low immunity period but no one got back to me. Told her I felt unimportant and neglected. So she told me I would have to see the doctor on duty (who was a locum and running late) before my treatment could start. Secondly, I had been sent a copy of a letter from my surgeon to my GP stating that my lump was ER 0. It isn’t. It’s ER 5/8. When they did the biopsy they told me I was grade 3, triple negative but after the pathology report I was told grade 3 ER pos. This is the second letter from the surgeon to my GP which has said ER neg and I just want to know that they giving me the correct treatment!!! So the head chemo nurse showed me the path report - ER 5/8 and said she would get an amended letter sent to GP. Felt better. Then, like you Lori, when eventually got round to starting treament they reckon my best vein is already shot but maybe ok for next time. Ended up with cannular in side of wrist. So from a 9.30 appointment I eventually got home at 2.15. And the cheese sandwich was stale! Sorry to offload like this. Normal service will be resumed after a nap.
Hi Moira,
So sorry to hear about your rough morning, no wonder you are frustrated with them being given all this conflicting information I hope you get some clarification and peace of mind soon. It is no wonder you were feeling emotional, I was feeling similar, very teary when having issues with the infusion - hope you feel better soon, sending you a huge hug, and lots of love
Hi Kate,
Hope you get on ok today!
Hi Mel,
I have not been given the option of alternative port etc they just said they would see how I was next cycle when I move onto Docetaxel. Although after 3 cycles of that I am scheduled for Herceptin every 3 weeks for a year so it sounds like It would be beneficial to have one fitted. Guess I just need to wait n see. P.s. I am very envious of your 13 hour sleep!!
Love Lori xx
FECT cycle 2 day one - a third of the way there!
Infusion went ok today though slight SEs seemed a bit more pronounced e.g eyes felt a bit sore for slightly longer and my veins hurt a bit this time too. I was given an infusion of an anti-sickness med that is supposed to last 7 days,so hopefully I won’t suffer like last time. I hope you’re ok this time too Angie.
Lorri and Mosiecat I’m sorry you’ve both had a rough time.
Angie - I hope you’re feeling better today.
Barbara - welcome to the Group.
Mel - good luck tomorrow.
Kate - I hope all goes well with your onc appointment.
Mel xxx
I am having a PICC line insitu on 22/5, although had to really push for it and four follow up calls to ensure I had not been forgotten. With all the problems some of you have had with your cannulas it is proberly worth pushing to! Mine has been sorted out by the oncology nurse. Good luck x
Hi Moira
Awww I’m sorry you had a rough time this morning Lets hope the chemo nurse sorts everything out for you. I hope you feel better after your nap sending you a big hug. X looks like you, Lori and me will have to consider a picc line if wecontinue to have problems with the cannula on our next cycle.
Kate - hope all goes well with the Onc .
Barbara - welcome to the group, we are a friendly bunch and the support is great
Angie - hope your sickness has eased.
Today I feel quite tired despite sleeping through, although I did dream thAt I was playing bubble witch all night, but every time I burst 3 bubbles it was killing a cancer cell so was worth it lol. I think I will have to stop playing so much…but it is so addictive
Side effects liveable - especially if I eat little and often. Today I’ve had a craving for a sandwich of sliced tomatoes with plenty of salt and mayo. It was delicious might have another for tea.
Kim x
Sorry to hear of the trouble you are having getting the correct info Moira, hopefully they will get it sorted asap now you have let them know how its affecting you. You don’t need that sort of hassle on top of treatment and they should know that!
Barbara - welcome to our ‘gang’, not one we asked to be in but now we are here we seem to have a good group to help each other through the good and bad times.
Lori - I would ask for a port or picc line if you are on herceptin as that is a long time for the veins to be causing trouble (or rather the nurses causing trouble with the veins!).
I’m back from the ONC, no real news as the path report wasn’t there for all 3 tumours, he spoke to the pathologist who said ‘oh didn’t know I was testing all 3 but I’ll get on to it now’…hmmm left hand/right hand don’t seem to know what is happening. The first tumour was Her-, ER+ so definitely tamoxifen but not herceptin if the other 2 come back the same… We did go through my SE’s (or rather the lack of) and he has reduced my steroids (which OH is happy with!) and changed my laxatives so I shouldn’t have the same ‘blockage’ as last time but all in all carry on as I am was the message. OH asked if there was anything I shouldn’t do whilst on chemo, ONC gave a list of housework jobs which OH laughed at and knew then he wasn’t going to get any sensible answer so I was quite happy!
Hope you are all getting some pleasant evening sunshine, we stopped for an ice-cream on the way back from hospital at Ditchling Beacon and it was windy but a fantastically clear afternoon and what a view!
Kate
x
Good evening Angels,
EC cycle 2 Day 1
Just had two solid hours sleep to top up the miserable four I managed last night. I’ve been fine up to last night then all these demons seemed to arrive at once to keep telling me about the enormity of the situation I’m in. Think most of it is down to stubble reality! Anyway, onwards and upwards. I’m not going to say a third of the way there till I get to day 14 because then I’m past the dodgy bit.
Lori, thanks for the good wishes. It sounds like we’re walking a very similar path. You posted a while ago about looking in mirror issues and I’ve just reached that hump in the road!
Kate, hope your appointment goes well today. You always sound so positive . Long may it last. I’m still waiting for all the original stubble to go. Was told that with epirubicin you don’t stand much chance of keeping any hair and the same goes for cyclophosphamide!
Angie and Mel A, Hope your managing ok s/e wise. They’ve given me a whole four ondan whatsits and six dexa to see me through. Mind I’ve got a whole packet of mexa something anti-sickness that I didn’t need last time and most of a packet of lansoprazole heartburn tabs that I didn’t need afrer day 5. I see a new career as a drugs baron coming up.
Mel, I bought the Talika stuff. The one I got is Talika Expert. It’s got a mascara wand and sponge tip combined so it does both eyelashes and eyebrows. Think that’s the one Pauline has. And, yes it’s the epirubicin that’s messed my veins. Perhaps that’s part of the reason you had such an awful experience too Kim.
Sandie, I’ve had a look at that MacMillan recipe book and yes some of the soups and main course look like they could be worth a go if I can get my ass into gear!
Finally, Judy, that pink etc scarf looks fabulous. Loud and proud! You go girl! Can you tell I watch too much reality tv?
And it’s time to post another new look. I’m very proud of my ‘new’ cut-off old t-shirt turban. Thank you youtube!
LOve and hugs
Moira xxx
Hello Aprils,
I haven’t posted for ages, sorry. I’ve been following the thread though, honest! I just had my 3<sup>rd</sup> EC dose so I’m back to sitting around so thought a quick summary might be useful for some of you. I have stage 3, grade 3. Two tumours, one >4mm and its smaller evil twin. MX on 12<sup>th</sup> Feb, with node removal, 5/12 showed active cancer cells (hence the grade 3). Chemo will be ECx4 then Taxotere x4. That’s the bad news; the good news is that work are being fantastic, and they pay the premiums for good insurance so I can get private care, I have great support from OH, friends etc. and I’m still being paid!
My Onc advised me to treat the first cycle as a template for the following cycles, which was really good advice. I knew pretty much when I’d be feeling better and was able to plan. Trip to see parents in Manchester (from London suburb) on day 9, back day 11 feeling normal. Tate Modern, early birthday meal and test driving cars (which we probably won’t buy!) each day on the bank holiday w/e. I am on lots of pills/injections to stop nausea and stimulate wbc production. The all seem to be working. I also have a small in-house pharmacy as recommended by the BC nurses.
I’m having numerous side effects (including getting overheated- like now!) but they didn’t all hit at the same time so they were manageable. I think I’ve also been lucky in that respect. The worst one is the fatigue. The first 3 days revolve around digestive issues; the meds have happy stuff in them which make you feel a bit better. The next 3 days are my “zombie” days when I just sit around without the will to do anything more than watch tv. Then I slowly start to improve by the Thursday I get a definite feeling of positive energy and I feel I’m “back”! Morning on the first cycle, pm on the second so maybe this will be delayed by ½ day each time. My day 10 I feel pretty normal, but have to be aware that my energy can disappear really suddenly. My Onc also told me the symptoms will probably get works as the drugs change and my body gets fed up with the whole process, I’m bearing this in mind. I’ve seen/heard the comment that I should do what I can, and I am!
Lots of people tell me I’m doing really well and that I’m a good example. I reply by saying I’m only doing what I can; and that some of you ladies are doing just as well with a lot more problems to deal with. Keep it up, you are all inspirational!
I also still have hair! I wasn’t going to bother with the cold cap at first, but the nurses seemed keen so I gave it a go. I am now sitting with dried conditioner under a Buff, which I can’t wash out until tomorrow so its not without its drawbacks! I’m also seeing some loss, but just individual hairs when I comb it, not chunks. My Optimistic Onc (not!) thinks the Tax will see the rest of my hair off, but we’ll see.
I’ve been doing loads of research recently. If any of you are interested I can share this with you. Exercise -very important- was my first stop; plan now in place and I’m currently fasting (!) and am developing a plan of what food I will be eating going forward (turmeric and green tea vg). Will also look at the McMillan recipe book (thanks Sandy!) My goal is not getting to Stage 4!
Hugs to all of you.
Roz
hi 2nd cycle angels ( is that all of us now)
so no one should be on here because everyones sleeping like a baby? I cant keep my eyes open, got a den of furry blankets and pillows in the spare double bed and i’m stayng there until normal service returns, its actually quite comfy, i’m enjoying it. still a bit nauseas, tastes gone again, just doing nothing for a few days.
poor moira - what a horrible time, its awful when you feel like they forgot about you isnt it, i had a few moments like that where they all look blank when you ask something, then they run and check, very unnerving. is that a tshirt on your head then? its good.
hi barbara - welcome
kate - glad your appointment went well, despite clarity,
kim - have you been sleeping a lot?
Judy - nice, you suit a scarf.
sweet dreams everybody, maybe we’ll have energy tommorow??
angie xx
Hi all
Moira sorry you had a miserable time at hospital, but hopefully they’ll get all the info right now. my only gripe with the system so far has been around passing info, which NHS seems to be poor at. I feel I have to take charge of it, and tell everyone what I think they should be doing. When I went to see the onc yesterday, when I went in it was the radiotherapy onc, which I wasn’t expecting. I said ‘I’m confused, I wasn’t expecting to see you, are you doing the chemo now?’ She said ‘no,i don’t know why they’ve sent you to me, I think there’s been a mistake’ and then she went and found the right onc and added me to his appointments and he saw me instead. You have to keep on top of it all the time ,apparently the only person who has all the info is you! - you are the project manager! 
your turban looks great, I’m inspired to have a go and thanks for the talika info. I’m on a mission to save the eyebrows.
another one down,
Mel x
Hi Everyone
Moira - love the turban…thank god for you tube:-D I’m going to order the talika expert tonight, see if it helps.
Angie glad you are feeling Ok. Your cozy den sounds wonderful I’m sleeping much more at the moment and keep having little naps in between snacking which seems to keep the nausea at bay…thankfully.
Mel - I have to agree with you about being passed around etc this is definitely an area where the NHS is poor. I work in the NHS, in a different Trust to where I’m having my treatment, and I find it frustrating that there is such variations in protocols and procedures in all the different areas where we are being treated. It must be far worst for those of you who have very little experience of the workings of the NHS.
Have a good evening and lots of sleep tonight everyone
Kim x
Hello Angels,
had my bloods taken by gp this morning, so fingers crossed everything will be okay for cycle 2 tomorrow. I’ve had a good day today, got a new emerald green scarf which I’ve ties on my head and I love it. I have to say, I quite like scarfI, I hated messing with my hair, it was never my pride and joy and I did tend to wear a lot of hats to hide it anyway so losing the hair has not been a big rench for me. I have terrible, terrible wind today, I just hope it goes before tomorrow as it might be quite embarrassing while I am having chemo if not.
blimey I’ve missed a load of posts, hello Barbara and Roz , nice to meet you both and welcome to this lovely group.
Angie , you’ve had it bad, I do hope things start getting easier for you. are you wearing the travel bands for nausea?
Moira , poor you, sounds like you had an awful time with your second session, I think considering what your going through, your entitled to have a melt down, every now and then, hope you feel better tomorrow. I love your tshirt turban,I’ve made one, just for knocking about round the house.
Mel I went out and bought some new makeup today, eyebrow pencil, really soft eyeliner, some new eyeshadow and some false eyelashes as my eyelashes are getting quite thin. I’m gonna try the eye lashes when my daughters in, she’s worn them before so I may let her put them on for me.
Rozz does each cycle seem to get better or worst?
Kate your oncologist sounds fab, I wish mine wold give my OH a list of tasks I can’t do, starting with the ironing.
lori , I hope you can get your line sorted for the next cycle.
best wishes ladies, hope you all have a nausea free night with plenty of sleep, hopefully we will be over the worst, this time next week. I know I have at least 8 episodes of vampire diaries to watch, I’m saving them for tomorrow night onwards. Take care and big hugs to everyone xx
Judy
Well I’m still awake! Forgot to say earlier, good luck Mel and Judy. Hope you have a stressless and pain free time tomorrow .
I’m loving the t-shirt turbans. Made another this evening. Gives me something to do with all the small size t-shirts that won’t ever again fit round my growing spare tyre 
.
I’m not feeling too bad this evening. Think a good night’s sleep is on the cards.
Oh, and welcome to Barbara and Roz. I’m not always quite so miserable and it’s brilliant having all the wonderful support that comes from the Awesome April Angels. Thank you, each and every one.
Moira xxx
ps. Got my lovely son coming up for the weekend. Should I ask him to bring his electric shaver with him?