@swk1981 hope chemo has all gone well for you and it’s another one ticked off,Mr ribena face has started to kick in with me xxx
@swk1981 Hi how did today go?
I’ve done my predict too mine is 5 year 95%, 10 year 86% and 15 year 79%, I’m 47, grade 3 tumor, er positive, pre menopause, Ive based it on 10 year hormone therapy but that hasn’t been confirmed yet but has been mentioned, think mine was similar to yours @pollyanna1 i was lucky no lymph nodes involved with grade 3 and they have also told me o will need tumour bed boost following radio x
Yes ours are fairly similar, my tumour was 25mm. I’ve tried mine in 10 year hormone therapy and adds 2-3 on to it. So far they’re saying 7 years. Initially it was 5 years as they thought I was post menopausal but bloods have said I’m not., oncologist told me yesterday recent research shows 7 years better but also research changes all the time. I find this positive as it’s amazing how treatments have changed in 5 years. Initially I was just to have radiotherapy until Onco score changed that. Very grateful for all these extra tests xxx
1 Like
All the talk about steroids and I still managed to take mine wrong today, my brain just doesn’t work properly , just looked back on my messages on here and I replied to @belle1 what I was doing on EC instead of on docetaxel and it must of been in my head I’m supposed to take 4 in the morning and 4 at lunch time , today I took 2 in the morning then 2 at lunch then realised my mistake and had to take 4 at 6.30 pm to catch up 
think it will be a long night, I write all my medication down and when and what I take and just wrote that all down wrong too , I’m sure it will be fine but I will tell them in the morning when I go for my treatment 
2 Likes
Aw no! Chemo brain has a lot to answer for too 
I’d think the main thing is that you’ve taken them all so fingers crossed that’s all ok for tomorrow especially if you take them right in the morning as well
2 Likes
That’s what I’m thinking too, I’ve left a note by the kettle so should remember tomorrow lol, 🩷
Hi ladies,
Sorry again for being quiet & only catching up with chat, its been 1 off those weeks.
Had oncologist appointment on friday, however she was in trials so bnc spoke with me - they are pleased with how I’ve coped on EC, side effects & issues & explained more about Paclitaxel to me. I got pre picc line bloods done & put on 5 day course off antibiotics as Ive got a chest infection.
Tuesday I was at CAU at the Western & 7 hrs later I had my picc line fitted (all eventually ok, but it did take at least 10 attempts to get it fitted as they kept loosing the guideline on the ecg) xray then confirmed all ok & pre chemo bloods taken, so I was moved further round as doctor needed to see me ref this cough/chest infection. More bloods taken (thank god for my line) as my temp was now 38.2 
it would have been a “call the number” but I was thankfully already there, the doctor eventually examined me, bloods came back with raised crp levels so different antibiotics given, but chest was apparently clear (no idea how as I was barking like a seal & had sore sides due to this) & I was sent home.
Today I’ve been awake since 03:20 as its my 1st cycle off Paclitaxel today (I get 4 off these) - this picc line is my saviour & I so wish I was given it at the start of EC. Anyhows 10 steriods at 4am, more steroids, antibiotics & sickness meds at hospital at 10am & this cycle went brilliantly & I cold capped again. Now am VERY WIRED & there’s no danger am I going to sleep tonight. Meds wise ive still got 2 days of antibiotics to take (however after all the steriods I do feel much better already) ibuprofen gel for my cording, anti sickness, poo tablets & the dreaded filgrastim injections, however am pleased this is all am taking.
I hope everyone is doing ok, we have all had different side effects & treatments, but we are all pushing through.
Congratulations on those who have finished chemo & its nice to hear whats next as I also had radiotherapy to look forward too.
Good luck to those doing chemo this wk or next.
Am crap at catching up, but am going to try and nip in more, just the past 4 wks have been hard with various side effects & appointments
Take care & be gentle on yourselves & yip am rambling (am blaming the steriods) 
so am away to see what rubbish is on the tv xx
6 Likes
@ivegotthis01 glad to hear you got your picc line in and hopefully it’ll be easier. I got mine done through cannula and by the end veins kept collapsing, wish I’d had a picc line. Every Hosiptal seems to work different.
Glad to hear your chest infection is getting better, steroids will definitely help it.
I slept a bit bettter first night after chemo but after filgrastim injection yesterday the horrible side effects have kicked in. Ribena face isn’t just as bad this morning.
I’m definitely using anti sickness tabs more this time to try and keep on top of sickness.
Glad to hear from you and hopefully this cycle you have an easier time xxx
3 Likes
Thank you. Am also in the Ribena face gang today. Ive surprised myself and actually managed to grab about 6hrs sleep, cough isnt as bad but did have 3 coughing fits during the night but also managed to sleep on my right side (I’ve not been able to do this for about 2/3 weeks) so am taking these little gains todays.
Trying to up the fluids & chill today as I’ve no idea how am going to be feeling & tbh its lashing it down with rain here in Edinburgh so am taking it as a sign to rest up 
have also managed some toast & so far no sicky meds needed - still very early days, but picc line definitely made things so much easier yesterday, I actually dont think they would have been able to get a cannula in me as my veins are also shattered & bouncy. But totally agree it depends on the team & hospital your under, which I feel isnt right. I just hope the study they are doing helps push for the patients to be able to say yes at the start to picc lines instead of oh cannula will be fine as this in its self effects you, especially every 2 weeks.
I hope the sickness settles for you & you have a gd day & weekend xx
4 Likes
Good to hear you’re feeling a little better @ivegotthis01 but do take it easy….the rain is definitely a sign for you to stay still and chill!
I agree about the PICC line, it does have its own issues but I’d imagine it’s so much easier than a cannula and I’m making a stand for it being used for my bloods too. There isn’t anyone trained in phlebotomy to use the line, so I’ve asked the BCN to do them at my pre-chemo appointment. I’ve also managed to feed this back through a patient group and think I’ll bang on about it a bit more as times goes on. It’s got to be better than chasing and collapsing veins, all medical staff know they are an issue during chemo.
That being said, I’m so looking forward to it coming out once chemo is done! Good job it’s so flipping cold here so at least it’s been covered up 
3 Likes
Oh I am
As I’ve said further up, Western General in Edinburgh are doing case studies on this at the moment, since they have moved EC-T patients from 3 weekly to 2 weekly cycles as its been proven to have better results, sadly its worse on the veins - hopefully this push will make it better for those in future taking on their journeys.
But yes, I feel things just went so much smoothet yesterday with it, dont get me wrong getting it done was abit off a nightmare for me, but am feeling the benefits already.
I’ve found out there’s only 2 people at my surgery who are picc line trained, I do find it strange the phlebitis isn’t trained in this, I mean this is a pro of having the line, no more needles or collapsing veins.
Its a keep warm & chill day for you too, enjoy.
I’ve just bought some comfifast tubular bandage from amazon so I can try & cover it when out, its getting warmer in Edinburgh & nearly shorts & t-shirt weather (well if the rain would go away that is) & am not sure others would appreciate seeing my picc line, am not bothered about flashing it to the world though, will see how I get on with it xx
2 Likes
Hey everyone, I’ve been trying to catch up with everything today. For the last three days, I’ve been either glued to the toilet, sleeping, or feeling too weak to do much of anything. It’s like my muscles have turned to jelly and my glands are all swollen. It’s crap because my 9 years old have been off school yesterday and today feeling ill, I couldn’t do much for her yesterday but on the upside, I did manage to take us on a short walk with our dog today.
Can I ask how you all predicted your chances and with what tools? I actually find it scary somewhat.
I’m 48, with a triple positive for Er, Pr and HER2 with two lumps of 25 x 17 x 19 mm and 6mm. Peri-menopause, although for the first time, I am late with my periods - they did say it may stop with these rounds. I was on HRT until the diagnosis.
On a totally different topic, does anyone here have a holiday plan or is it not on your radar? I was told not to make any plans as it was time-sensitive until the bulk of my treatments were done. x
3 Likes
There is an online tool called predict for breast cancer which calculates your survival rates (or prognosis) for your cancer. You put in your details and it gives you 5, 10 and 15 year survival rates. It’s important to also remember that data is always a little behind and survival rates/treatments are improving all the time too. The website is
But not everyone wants to do it. If you’re unsure it’s also an option to discuss with your oncologist.
I have done mines - I am 36, HER2 positive and grade 2 stage 2 (1 21mm tumour). However, i haven’t had surgery yet so don’t have the full information confirmed (as I’m showing on scans as having no lymph node involvement) so I’ll wait till after surgery to redo it if I have any positive lymph nodes. As it stands, I’m 83% survival rate for 15 years with no node involvement. I like to have information and stats but it can be a bit grim looking at it in black and white (for example 83% is quite good but thinking about it that’s me making it into my early 50s so depending on how you think it could be a hard pill to swallow) and if you’d rather not know then it’s an option and you can always use the tool at a later date if you want.
2 Likes
Also, I’ve got holidays booked from April onwards next year. I pushed one in January back to April as my treatment won’t be finished till Dec if all goes smoothly and I wanted more time to recover so I could enjoy my holiday! Plus it was the Maldives we had booked so long haul flight I cancelled this years holidays for treatment but if I’m ok i might still do a wee city break in January as I’ll still have the time off work
4 Likes
Thank you for that.
Did they tell you what stage you were at? I know mine is Grade 3, but not stage. I thought they would tell you what stage after the surgery as like you mine is showing no lymph nodes but they will take some out with the surgery.
If I’m being honest, I don’t think I really understand the survival rate but I guess I will bring it up at my next meeting or with my BCN.
Maldives, how wonderful!!! That’s definitely something to look forward to, for sure.
1 Like
Yes - I wasn’t fussed about asking myself as I felt I had the info I needed and had worked it out myself from the breast cancer now booklets but my mum kept on at me so I asked them to shut her up😂
Yeah it’s definitely worth talking over with your BCN as they’ll be able to go over it properly with you to let you make an informed decision on what you want to do in terms of finding out too
I honestly can’t wait… It’ll be nice and relaxing too which will be just what I need after all this! It’s most likely a once in a lifetime thing for us and for some reason we thought to heck with it we’ll just do it (and booked it before I knew about my cancer)
6 Likes
@pinklady2 My oncologist went through predict with me when they decided I needed chemo, like you I was told grade 3 but not the stage, you don’t need to know the stage to use the predict.
Regarding holidays , I ask everytime I go for an appointment if I can go away this summer so far they always say October at the earliest, I’ve got a Caribbean cruise booked for November with daughter and husband and 12 others and I’m really hoping I will have some hair growth by then 
I’ve got another appointment with my oncologist in a couple of weeks so I will ask again about this summer, I’ve completed my fifth chemo today my second docetaxel so I’ve only got one more to go and all being well that should be 5th July
Hope everyone is doing ok and we all have a good week xxx
6 Likes
@elle16 1 more to go for you whoop whoop! I hope you are feeling Ok from your treatment today. I bet you can’t wait for your cruise! I’m desperate to book something too! It’s nice to have something in the diary to look forward to x
3 Likes
Nice to hear chat about holidays, that must be a sign that we’re getting closer to the end of this road? I have a plan to do a “big” holiday before I go back to work- maybe around October 
No clear idea of where yet but I’ve started dropping hints to himself, he needs time to think about these things!
I spoke too soon about the PiCC line hack re: blood tests….my oncologist (whom I’ve only seen peeping around the door to say hi so far) phoned me this afternoon out of the blue 
The BCN who runs the pre-chemo clinic has left so they are trying to cover us by phone rather then face to face. It was great to chat to her and she was able to answer all of my questions - up to a point - but now I have to go to the Phlebotomy department along with all the others on Monday to have my bloods done 
A bit like you @pollyanna1 she said that at my next appointments, 1st July, she will see me and go through in detail what happens next. She did outline that the minor surgery will be around the beginning of August, with radiotherapy in early September. The big surprise to me was that radiotherapy will take three weeks….she wouldn’t go into any more details over the phone but assured me that she will go through everything face to face! I’m hoping that might mean we could get a week away somewhere in the UK at least, in the summer…. Between hemp recovery and surgery or between surgery recovery and radiotherapy starting? Bad timing with schools being off too but it is what it is and maybe it will coincide with the sun actually coming out!!
5 Likes
Remember that it’s 83% but 5% of people would be dead from non-cancer in 15 years so yours is actually 83/95*100 as long as you weren’t planning on a heart attack / car accident etc. If you weren’t planning on that then yours is actually 87.4% adjusted. You’d bet on that in a horse race!! X
3 Likes