Hiya Lisa. How are you doing? All ready to do it all again tomorrow ? It’s just Placataxil tomorrow? I don’t mean ‘just’ but no Carboplatin this time? How have you got on with the tummy injections? Any side effects with them? Sorry, so many questions ? Hope you’ve been okay xx
Hi there, I start my chemo next Friday 16th - it’s good to read all your posts so far. It will be great to be part of such a supportive group. I hope you’re all doing ok and coping with the side effects of treatment and good luck to those of you who start treatment this week.
I go for a look round the unit on Monday and am still undecided on the cold cap or not. Hope I can decide then with some more information from the nurses. We’ll be needing those woolly hats to see us through the winter. xx
Hi Lou and all, today is the day after my first chemo and to be honest i’m surprised at how ok ish I feel, I drank 3 litres of water throughout yesterday and am up to almost 2 so far today I think this really helps, I bought a 750ml sports bottle so I can keep track and took it with me to chemo, it’s definately worth trying. I also cold capped I know there are no guarantees but thought it worth a go - I found out the time you wear it depends on what drugs you have I am on FEC and of course that is the longest 30mins before, during and 90 mins after so about 3.30hrs all in all but after the first 10 mins I couldn’t feel it and the rest of me was warmed up so if the thought of losing your hair is causing you added stress it’s got to be worth a go. Good luck next week ?
Hi all glad to read so far your all doing ok
My side effects haven’t been so kind to me once the nausea settled I then began with pain everywhere especially my back and arms
Chemonteam think this is most likely a side effect of the injections
So will discuss all of this again before my next cycle
I’m awaiting my hair to start falling out as I chose not to cold cap
I hate being cold so decided it wasn’t for me
Well done to you that have though ?
Good morning ladies
Well one is in less pain now I’m on strong pain killers
Could I ask have any of you not cold capped
I’m just starting to wonder how long my hair will last before it comes out xx
Good morning All,
I started chemo yesterday. Biggest problem was the cannula, so hope to have a PICC line in for next time. Just feeling very tired so far today, all the anti sickness medication is working. Will need to keep close eye on blood sugar as diabetic, the stress sent it up quite a bit.
i didn’t expect to be well fed while there, or get a short therapy session while waiting, very nice extra.
Hello Kateday
I’m from the August thread and I started to shed my hair around day 14 - it was quite minimal at first and then ramped up just after my 2nd treatment. I think everyone can be a little different but from what I’ve heard others say these timescales can be fairly typical. On a positive - I’ve just had my 5th EC and I’ve started to notice a little bit of re growth.
To all the ladies on the injections - I was advised to do mine in the evening and to date I’ve only noticed the bone pain once. Not sure if this is because I’ve been lucky so far or if the discomfort is occurring whilst I’m asleep but it’s not enough to wake me up.
Like a few of you I was really apprehensive about injecting myself but I have to say I’ve found it much easier than I thought possible. Just squeeze a bit of your belly fat, wipe it with a disinfectant swab, push the needle in (honestly you will really hardly feel this) and press the plunger. Trust me - I’m the biggest wuss in Yorkshire - but it really is ok. I think the thought of doing it was far worse than the reality of doing it.
Good luck all
Sue xx
Well I’m day 11 of you count the day I had it
I actually started end October but started this thread as I felt a long way behind some of the lovely October ladies
All though I have asked advice there once or twice
Good luck to all staring the next few days
Today I have managed to do some work from my laptop when yesterday I could barley move
It’s such a tough journey but us woman are strong
Would be interesting to see what treatments people are having for what diagnosis
So many with same diagnosis yet different treatment plans x
Hi Kateaday
I also find it so confusing as to why the treatments vary so much even when it seems the condition is the same? For the record i’m Stage 2 with a grade 3 tumour went straight to surgery and even though lump was smallish 2.1cm mastectomy was only option (small boobs and position of tumour I think) and am now on 6 cycles of chemo 3FEC then 3T with herceptin snd hormone therapy to follow. I am er+ and HER 2 + too. Make any sense to anyone? I didn’t get offered any trials. I am day 2 after chemo day not sure if that counts as day 3 but still feeling ok not as tired still nauseas and have a tight chest but might due to still swollen temporary implant.
I just want to say it’s so great to discuss our situations on here and to remember everyone is different, different treatments responds differently and we should all listen carefully tonour bodies I am a constant doer never sit down so I am struggling but really making sure I sit down for a big part of the day so being in here is also keeping me occupied ? keep going everyone and keep sharing
Hi Kateday. I was diagnosed with triple negative Invasive Ductal Carcinoma with no lymph node involvement. I am currently on a trial which involves 12 week of constant chemo. The first week of Placataxil and Carboplatin then day 8 and 15 of Placataxil then back to the same cycle again up to week 12. Then EC every 3 weeks for 3 cycles. Will then have surgery then Radiotherapy. On day 3 after my 1st chemo and managing okay so far. Good luck to everyone. We’ve got this ? xx
Hi all, I’ve got a start date for chemo on Weds14th so getting very nervous now. A real needle wuss so reading this thread isn’t helping ?. Nobody has said anything to me about having to inject myself, ?maybe the word has spread around whole hospital not to mention anything about injections to the hysterical freak who sobbed all the way through the CT scan just because she had a cannula put in…
Sals, have you got a portacath? You said you have a temporary implant… Going to the Royal Marsden tomorrow for an assessment, so see if that would suit me better.
Getting a bit down about having to do any of this stuff ? Had a bad period when I was waiting for all the scan results, thinking it had spread everywhere, but when the consultant said it was just the one battlefront (triple negative grade 2 lump) I was dancing on pixie dust. Think I need a top up ?♀️
Wow jazzcoooer your are a strong woman agreeing to a trial
I’m triple negative grade three no node involved I had surgery first now I’m having 4 EC the. 4 t
And 4.5 weeks radio after that
liloc
I was never told about the injections untill I had chemo and the the goody bag of Medican appears
I swear to you the actual injection isn’t bad you don’t feel it the needle is very small I promise
If your not able or someone close to you isn’t able to do it for you then they can arrange district nurses
I didn’t want that
I didn’t want to be waiting in all day for them
Also there advice was to take at night so again I wanted to be able to do this as much as possible
I will keep you all updated on the hair situation
I would say it has thinned but if you didn’t know me then you wouldn’t know
It’s funny the first thing I do when I wake is feel my head to check my hair is still there
When the time comes I will just be brave and shave it , but for now at least it’s ok
I managed to go and see people at work today which has lifted my spirits
Keep strong ladies
Good and bad days is going to be the new norm
I have decided to try make the most of a good day xx
Hi All,
I am a bit behind some of you guys 7 wks post op mx recon and node clearance done on 18 th sept. Delay due to me agreeing to do trial, then spending a wk doubting my decision ( the doubts made me feel ill, worse in fact that how I felt on initial diagnosis). Spoke to oncologist so no longer on trial and now going ahead with chemo, having PICC line and bloods 16 th 1st round Fec 19th. Bit anxious but need this journey to start moving… keen to hear how everyone gets on. Fingers crossed our SE’s not too bad…? hugs to you all.
Morning Liloc,
Early reply from me, my slee is a bit erratic and my newest chemo side effect is heartburn so i’ve Been burping all night, regardless I had imagined myself laying in bed for a werk barely able to lift my head so in a way I have been pleasantly surprised by the managbiluty of the chemo itself and side effects. I am just having cannula each time as i’m ok with needles and my veins are ok, but for the self injection don’t panic I just popped into my GP the next day and the nurse did it as I forgot to get the chemo nurse to show me what to do, I might do it myself next time - let’s see…the temporary implant was a good option for me it’s also known as an expanded as it leaves you with lots of options, I didn’t want to be flat if I could avoid mainly as I have 4 teenage boys and I thought it would be even more for them to handle if I looked so different but I didn’t want to do anything that might cause me more troubles as I was warned having a permanent recon at time of surgery could cause problems if you have chemo or radio after it’s slim chances but I wanted to keep options open and this means you keep your skin so should be no need for grafts when and if you go for permanent recon. If anyone wants to get some information there is a really good book called the complete guide to breast cancer written by 2 lady doctors one a breast surgeon who both had breast cancer, one of the writers is called Liz, laying in bed now without the book but if you can’t find it let me know and i’ll put the authors up - it’s on kindle too so if you have one no need to go out of the door
Hope everyone feels a little better today whether that’s health or nerves ?
Hi Kateday
I’ve also been diagnosed triple negative (2 tumours) plus lymph node involvement so stage 3. I’m doing the same trial as Juzcooper1971 & Lilypad so will be interesting to see how we all get on.
Had the results of my bone scan yesterday which were clear (thank god), I was sooooo scared another sh*t storm was coming my way! I’m off for my second chemo session today so fingers crossed the upcomming week is similar to the last, completely manageable if it is. @Juzcooper1971 - Yesterday (day 7) was the best day ever. Felt totally normal and ate like a pig! :smileylol:
Stay strong everyone and lets keep each other going. #WEGOTTHIS
Much love Lisa xxx
Hi Sals, thanks for your reply, sorry I completely misunderstood about your temporary implant, humble apologies, I was thinking it was the portacath implant that I am being assessed for today. Sorry, I was only diagnosed 3 weeks ago and it’s been a whirlwind of terminology since then. Going straight into chemo with surgery and rads not til next June/July so surgery is still off my radar. Appreciate that most of you have been fighting this battle for longer. Hope your boys are helping you out, I’ve got a 14 year old, not expecting too much out of him (Fortnite will take priority) but then again don’t want him worried about me, think you did well to try and keep things as normal as poss. Thanks for the tip about the GP nurse for injections!
Kateday, thanks for the reassuring words, hopefully I’ll look back at this thread in a few moths time and wonder why I was making such a fuss ?
Hi Lisa. I am so relieved for you with your bone scan it must be a massive relief as I know you were so scared. Apart from feeling like I’ve had a massive hangover for the last 3 days and aching today due to the injection yesterday I’m quite surprised how manageable it has been. Maybe it’s to do with how our chemo is being given on the trial Lisa? We’ll see. Thinking of you today on your 2nd chemo ? Love to you all too xx
Hi all
And liloc your not making a fuss
This journey is bloody terrifying but we’re on it
I have gained a cough today after such a good day yesterday boo boo
The worse you sit thinking do I calm the hotline or do I not
So far no temp ?
Bazzies
It will soon come round my second scycle is on the 19th
For all you starting or having your second dose I hope it’s kind to you zx
Hi all, I too felt well after first chemo and thought ok this manageable I can do this ! then unfortunately 5 days after ended up in a & e with a nasty breast infection feeling absolutely rubbish but they fixed me up with antibiotics and finally feeling normal again.
Take care everyone x
Hi all,
Day five after first FEC here, feeling much more rubbish today… have felt fine until now, but today I feel nauseous and have a tight head and am feeling generally low. I called the helpline and had a chat - they said an emotional dip after finishing the steroids (which I did lunchtime yesterday) is v common, so that makes perfect sense. Has anyone else experienced this? I’ve taken paracetamol for head and arm pain (had PICC line cleaned yesterday as well) - seems to be helping. Sals - my diagnosis and treatment is v similar to yours, only I’m HER2- so no herceptin here.
Interesting to hear that injections don’t hurt if you do them in the evening - I’m doing mine in the evening just because it’s more convenient, but I haven’t experienced any bone/muscular pain so far either. All makes sense now!
Disturbed sleep is vv annoying and I don’t know if it’s due to anxiety or medication… anyone got any tips??? or a magic wand???
GOOD LUCK EVERYONE AND HAVE A GOOD WEEKEND!
Helen