Hi ladies. Sorry for being so quiet on this thread but I’ve been dealing with lots of anxiety regarding starting paclitaxel. I know this sounds silly because ive just completed 4 rounds of the EC so youd think id be used to it by now. But no. Proper stressed myself out because they told me about potential allergic reactions… i didnt have one thank goodness lol. Worked myself up over nothing. HOWEVER… after having one round of pax… the pain. Omg. The back pain, the joint pain etc… i dont know if its from the chemo or from the jabs they give us. Ive not experienced this from the jabs before though. Ive had a slight niggle every now and again but nothing like this. Its lower back and joints i didnt even know i had 
has anyone else had this? Ive been told to take paracetamol to help but also to be careful of taking it incase its masking infection… which again, didnt help me because i now cant stop over thinking it all and am now taking my temperature every blinking hour…
Ive been fine pretty much this whole time but the anxiety this time around is intense.
Sorry to ramble on.
I hope everyone is ok 
Morning @cf640 how are you now? How long will you need to be in for? This has been a very rough ride & you have the right to want to shout how shit it all is. Let us know how you’re getting on.
@louc what a long and very stressful day you had. Hope the sofa was calling for you after.
@zaran are you taking an antihistamine ? I have been given this and take 20mg during when I need to inject myself post chemo. It really helps and haven’t had much bone ache. 
@bex1 haven’t a clue what to do re hot flashes but if you come across any advice pls pass on. I need it. Especially as I will be in a forced meno may years
Has anyone been told their hormone plan yet (if your ER/PR +)?
I had the joy of it and completely overwhelmed.
It’s for 7-10 yrs not 5. Something about latest studies suggesting it has better outcomes and aligning with the US & other countries
I have to take a hormone blocker and been suggested to go straight to Letrazole
Monthly injection (sadly not self administered) to suppress ovaries
Then twice a year for 3 years for an infusion for the bones which has a dual impact - protects against osteoporosis & helps reduce the chance of a reoccurrence coming back in the bones . This is done in the chemo ward
I wasn’t prepared for this. Feels like overkill but I’m not a Dr
All of this news was landed on my birthday lol - what a present!
I did have a fab cake & was spoiled with cards /presents. Not Ibiza but still joyful
I have my final treatment (bloods willing) tomorrow and I plan to binge on The Perfect Couple.
Hugs to you all July starters
Xxx
Hope you are both feeling better today @zaran and @deb1. Its hard dealing with new drugs and side effects & the side effects of the meds helping us deal with the drugs! I am on paclitaxel atm and have some side effects (rash on arms which is now controlled with steroid cream & antihistamine) the bone aches you mentioned @zaran I get with the filigratrim injections. The bcn nurse told me take them in the evening & to take paracetomol before. Its not nice thoughx I am switching to EC in about 5 weeks so wondering about side effects there.
@louc sounds like you had a really long day! The process defintely comes with lots of waiting for chairs, results & drugs. The lovely nurses lost the keys for the drugs cupboard the other week! Easy to do they are so busy. We will all be the most zen calm people after this.
@bex1 sorry about the hot flushes. I am having some too. I have been through menopause so wondered if drug related or a bit of both as I still get them from time to time. A second vote for a small fan beside you & layers you can strip off…
@cf640 hope are you?
Best wishes to everyone xx
@idcand49 just to say a Happy Birthday 
. Great to here you had a joyful day xx
I haven’t got to the planning stage yet (tnbc). It sounds like you have a lot of process. Good to know that its so well planned and thought through but a lot to take in xx
Hi Idm - at your radiotherapy induction day, they will show you round the radiotherapy room, believe me the bed you lie on is NOT comfortable its metal, but the team make you as comfortable as possible; and you are in and out within 20 min max. You hear a series of strange noises as the machine works. The team can monitor you breathing because they look at a graph of your body, my team leader showed me this, because i have a medical interest, but worth asking as it does help you understand what they see and how they work. You are given the option of watching a green light of how long you have to hold your breath, but i closed my eyes and counted, which helped me focus away from the process. You also receive a gown to use throughout and must remember to bring it with you at each session.
You simply remove clothing from your upper torso and then wear the Navy gown, or ours were navy. Just look at the process of being one step closer to reaching remission. lol Moonsox xx
Hi @idcand49
I am about to have 9/12 pac although they aren’t sure if I will get to 12 due to the neuropathy then go onto the EC for 4 the 15 sessions of radiation sessions in January 25.
I spoke to the onco team yesterday re further treatment.
I am PR/ER 8/8 and HER - grade 3 and 45 years young and pre meno.
I was told yesterday they recommend Abemaciclib (a targeted chemo tablet) and to take the Abemaciclib you also need to stay in ovary suppression which means zoladex injections for two years Also need an inhibitor along with these which is recommended for TEN years.
I’m also having a bone scan so might need the infusions too!
Oh the joy - chemo almost sounds like thee easy part!!!
Xxxx
Sorry for the rant anyone else shocked at the amount of treatment we need just to keep this coming back 
.
@idcand49 thanks for the reply, so im taking the tablet theyre giving me to take 2 hrs beforehand and then they pump me full of antihistamines during the chemo. But they havent given me anything to take other than that. They just said to take paracetamol if my temperature is normal. I’ll ask them today.
@booklover1 hiya! So they told me to do the jabs in the evening right before bed and to take paracetamol 30mins before. I have been doing the jabs at bedtime already but havent been doing the paracetamol until last night. I dont really think it helped much because i was still awake at 3.30 until 5am with backache and hip ache. Tonight is the last of the 5 jabs for this round so im just looking forward to that tbh thank you for the reply
@cf640 i hope youre ok my lovely
This is what I was given (photo)
My onco approved it but I get it from the GP
There’s a trial that looked an using antihistamine too
I also take a couple ibuprofen about a 30 min before the injection
I hope it becomes less painful xx
Pic doesn’t want to upload argh
It’d CETIRIZINE HYDROCHLORIDE 10mg
I take it daily few days before & during injection & a few days after
I’m with you on this. I always knew I would need “endocrine” but the extent & duration has only been revealed
The words 7-10 YEARS took me aback
It’s the usual, only pass what we need to know as we creep up towards it
Can I ask re the neuropathy, is it all the time and did it come on right away?
As I’m dose dense, I’m having the equivalent of weekly cycle 10,11,12 this week - want to look out out for the signs
Last cycle was extended to 2 hrs & more pre meds due to an allergic reaction but I broke into a weird rash/welt and had to use more oral steroids/ steroid cream
My body does NOT like Docetaxel at all 
And haven’t a clue how much radio until I meet the team next week
Hope there are no surprises
X
Hi @idcand49
The neuropathy isn’t all the time. My treatment day is Thursday and it starts prob Saturday through to Tuesday. It tingles in my hand and I kind of have to waggle them or if I do something like cooking or driving it can flare up.
. Then if I go for a long walk when I get back the tingling is quite severe in my feet. I find that rest cures it. No numbness though.
Today is weds and I only have the tiny amount of tingling…
The onco said it can get worse after treatment finishes so they are ringing me next week after treatment 9 to see if they are reducing or changing me to EC.
Doxetaxel might not be as bad for neuropathy than pac. Good luck.
Apart from the tingling pac has been kind to me and dreading the EC in terms of actually feeling ill and hair loss as managed to keep it all up to now xx
Xxxx
@debi1 been meaning to ask, did you cold cap when you switched to new regime?
The cold cap for the newer paxman machines are very diff from the old ones
The old ones size small is crazy tight on my but in the newer ones the size small is snug but beatable
I’ve cheekily “requested” the newer machine for this Thur
I also had a dream the other night I was washing my hair like properly , under a shower head and everything
Who knew that would be a nice dream for me
Hope the switch when it h happens isn’t too bad
I’ve iced my hands and feet during Docetaxel so wonder if that helped
And fab news re the hair
I have a massive bald patch on my right side but I can hide it & thinning everywhere
I just bought some large headbands to cover areas + my greys - no one realised how grey I was / am lol
Have you had EC then doxetaxol?
They mentioned something about me having a shorter but stronger regimen when I had my first onco appointment but then just went along with the 12 pac and 4 EC even though the amount of time it will take (till November) really upset me! Xxx
I do wonder how they work it all out.
Hey there
I’m doing the C part of EC with my taxol
And no E so instead of EC - T, it’s TC
I was in the “grey” zone for chemo so I think this is why
But looks like for hormone they are going belts and braces
Wonder what radio will be 
Hi everyone sorry not been around lately been working as much as I could between cycles. Anyway I have now met my match with dotoxal. I had the 1st one last Tuesday and I was worried about reactions side effects etc but all good and my body tolerated it well. Then Friday happened I was achy all over and stiff and felt like I had been hit by a bus and certainly not right, had a couple of bout of diarrhoea but nothing I was worried about it was the pain so called up I always feel bad about calling but was told to take paracetamol and ibuprofen or co-cod umol. So took that did had more loose bowels and collapsed on my bathroom floor guess what only me home was there about 30 mins before my son came home. I just didn’t have the energy to get up. No energy all weekend then spent in bed again took painkillers as advised. Called again Monday as still no right check my bp it was low oxygen stats low pulse high but no temperature. Was told just keep doing what I was doing and call back if no better. Tuesday am got a call for nurses can I come in for bloods. So I now find myself in a position to say I have too high neutrophils and white blood count . Stop taking filgrastim injections and take these antibiotics and hopefully you will feel better soon after some rest. So I am in bed and have been since Saturday feeling sorry for myself cause I have lost any get and go and positivity I had.
Sorry for the long post all about me I just felt I have nowhere else to rant as everyone keeps telling me I look well and am doing so well and you would not know I was having chemo.
Stay safe and well pink warriors and I hope you are all doing as best you can in your journey xxx
Thanks for explaining - mine was grade 3 and she said cos I’m pre meno they didn’t even oncotype it they just went straight for chemo as she said the chemo stopping periods is also a factor???
Everyone keeps telling me I look like I’m not having chemo like I should be grateful 
. I’m getting pretty fed up now I’m in week 9!
I hope you start to feel ok soon - sounds like a scary week for you xx
I started with the cold cap. 1st session went well but didn’t no the size i used and the second session had to remove half way. Felt it was crushing my head. So have had 2 and half sessions without cold cap. Hair is thining faster after the Doxetactel. But think ive done well to keep on to it this long. Happy birthday
Nice to hear from you. Sorry you’re not good. I understand 100% this is the worst i have felt ah well 2 more Doxetactel to go yeah. Been in bed two days. Pain all over. Look after yourself xxxx
Forgot to ask did they give you meds to take just in case of infections. Gave me levofloxacin and fluconazle for thrush to take on day 5. My mouth isn’t right but hopefully meds will sort before its too bad. Xx sorry if this post comes through multiple times. My apps not working or maybe my phone’s crap.