Hi everyone. I’ve made a few comments but this is my first post here. I will be starting chemo in early September, 12 x weekly paclitaxel, followed by 4 x bi-weekly EC. They gave me a leaflet at my appt last week which they said would answer all my questions…it does not! Is there anyone who has had the weekly Paclitaxel recently who can tell me how long it actually takes? And how long extra before and after the cold cap adds to this? I felt in my appointment there was a somewhat dismissive attitude to cold capping which made me not want to ask the question about the time. But I have a 3 year old and childcare is one of many factors I need to incorporate. Anyone who can lend their wisdom (and any additional insights!) as to what I’m going to go through with these is greatly welcomed
Hey, how are you feeling about getting started on everything?
I’m just have one week left then I’m finished with my 12 weekly paclitaxel and due to start EC the week after. So happy to answer any questions you have if it helps you or if you just want someone to chat to 
Week one is usually your long week as you will have your paclitaxel drip, then carboplatin drip. Both chemos are used in combination and both run for an hour each. If you’re also having immunotherapy you’ll have this before hand and that’s usually half an hour. Either side of all of these you’ll have a saline flush as well as premeds before. So I’d say assuming there are no delays you’re looking at 5 hours. Week two and three you’ll only have the paclitaxel so those will be shorter weeks, probably at most like 2 hours. And then that’s a cycle done and you’d repeat that three more times.
But honestly, I’d look at getting childcare arranged for the full day that you go. Delays do happen quite regularly, even unrelated to your appointment but they can have a massive knock on effect. If you can, get a morning appointment as you’re less likely to be delayed. Then as well on the day you need to allow time for the nurses to do the pre-chemo questions to see how you’ve been getting on etc. and then your observations (heart rate etc) and as well time to fit a cannula.
Also, have you been offered a picc line? If you can I’d definitely recommend it and ask your nurse or oncologist about getting one fitted. This honestly has saved a little bit of time during my infusions as all the nurses have to do is hook you up and then they can start on the various drips. It probably only saves like 20-30 minutes, but it’s so much easier than having a cannula every week as they can take a toll on your veins. Plus you can have your bloods taken from this as well so it’s a win!
Sorry it’s not a definite answer in timing! It really can just vary from day to day. I’ve had weeks where I’ve gone for 10:00am and left at 2:30pm and other weeks where I’ve been there for 8:30am and left at 7:30pm
Ahh if I’m honest I’ve been trying to not think about it. Trying to use my headspace on other things. But the closer it gets the more and more I have this impending sense of doom. Worse than anything I’ve ever felt before! Thanks - this is all super helpful. And I know everyone is different but how have you felt? Like, I’m trying to comprehend will I be able to look after my 3 year old? Make dinner/ do bedtime etc? This is what’s worrying me more than anything, scaring myself that I’m gonna be a danger to my child.
You must be glad to be nearing the end of the mammoth bout of paclitaxel? I bet it feels like a marathon. I had surgery at a different hospital and only just been referred for oncology - my consultant at my hospital had told me 3 x weekly chemo sessions so it was a bit of a nasty surprise to find out from the oncologist that this was my schedule!
And did you cold cap? Xx
Hello. Ive just had my 2nd session of Paclitaxel and used the cold cap. I will be having up to 18 sessions. My clinic (Guy’s in London) is very supportive of using the cold cap so don’t let them put you off. It’s not for everyone but worth trying in my opinion. It helps boost my confidence and helps me feel fairly normal.
I also have a PICC line as my veins are not great from when I had chemo 15 years ago.
It’s disappointing to hear that no one has talked you through the process.
Here’s my experience in case it’s helpful. First thing is the cold cap goes on. It needs to be on 30 mins before chemo starts and for 1 hour afterwards. With everything going on my apt is about 4 hours in total. They will spray your scalp with warm water to get it very wet, then gently rub in a shampoo or conditioner (not sure which!). This is to stop your hair sticking to the cap. You will need a headband to cover your forehead and ears. The cap goes on and needs to be a tight fit. Once you’re both happy, the machine is switched on and initially the cold is a shock. They key thing to remember is that after 10 mins or so you don’t notice it. You should be given a blanket, if not just ask if you need it. They suggested that I took paracetamol if I got a headache but I haven’t needed to take any yet. I take a scarf and a cardigan which is easier to keep one arm free for your PICC or canula. I’m given an antihistamine tablet, then a steriod through the PICC. That takes about 15 mins, then they wait a further 15 mins before starting Paclitaxel. That takes 1 hour to go through. When that’s done, they’ll flush the line and unhook you from the IV. My PICC line is cleaned and dressed. You then have a further hour just with the cold cap on. The time does seem to go quickly! It can be a challenge going to the loo! You need to unplug the IV machine and wheel it with you. Also disconnect the pipes to the cold machine but you don’t take that with you. It all sounds daunting to start with but i just watched others first. Like all things, you get used to it.
I haven’t lost any hair yet. I used the cold cap 15 years ago and my hair got a bit thin but there’s no sign of it thinning as yet. Ive just bought some products from Daniel Field who specialise in hair and skin products during chemo. Will start using them from this week. Very expensive though! Good luck. It’s tough with a young child. Be prepared that you might have low days and lack energy so make use of all the support you can. X
I feel like that’s a completely valid way to feel, especially before starting as it’s still unknown and all new at the beginning. I think the first one as well is always the worst as it’s the beginning big of a new normal for a little while, but once you get to know the team treating you and get into your routine I promise it does get easier. And I’m always here if you do ever want to chat with someone that gets it!
So overall I’ve actually not been too bad with it. I thought I’d be a lot worse and incapable of doing anything, but I’ve been able to keep my life pretty much the same. Like yeah I don’t have as much energy as I used to and some things, like cleaning for example, are a lot more tiring than they used to be, but having a good support network around you definitely helps. And you’ll start to learn your body’s new routine with how it reacts to the chemo. I find that on the day of once I’m home I just take it easy, but oddly find that’s the night I sleep best. Then for some reason the day after I’m full of energy. Then about two days later is my most tired day, then back to normal. But yeah just listen to your body!
I can promise you definitely won’t be a danger to your child. Obviously any support you can get, especially on your tired days will be really helpful to you both, and it takes away that bit of pressure! But yeah definitely try to take each day as it comes, and you’ll both get into a new routine and hopefully for the most part you can carry on as normal. Some days will definitely be harder than others, but as well some days will be easier than others. I’d say the best thing is try not to compare yourself to how others are coping with it as that will just be no good for your mental health. I found myself doing that at first but then had to keep telling myself that everyone reacts differently and everyone copes differently. Our journeys are all individual, but as well you can find a great support network on here.
Honestly I’ve got mixed feelings. Like yeah it will be nice to have a bit of a break as I feel like I’m constantly at the hospital. But in an odd way I think I’ll miss being there every week as the team have been amazing and really have gotten me through it all so far. Even other patients in the hospital help get you through.
I was the same as you, everyone before I saw my oncologist/changed hospitals said 3x weekly then when I met her and she said weekly I was like whoa that’s a lot! You’ll probably find like me that it does fly by. Because it really does feel like yesterday that I was even diagnosed!
I didn’t cold cap, as like you I was told by my oncologist that there probably wasn’t much point cold capping as it doesn’t necessarily always work with these chemo combos we’re on. I have been chatting to a girl who is on the same as us and she’s been cold capping and I think it seems to be working well for her. At the end of the day it’s your decision if you’d like to do it, not your oncologists, so why not give it a go!
Just thought I’d say hi as I’m probably starting early September on Paclitaxel weekly for 12 weeks and herceptin and Pertuzumab for a year every 3 weeks. I’ve used the cold cap before but was on another regime. I have the dates for an echo and follow up consultation and was told today he’s organising a picc line and chemo. I’ve moved hospitals for chemo to a local one. I’m giving the cold cap again even though I ended up having a no.8 as it matted. Not sure whether to have a short cut though before I start.x
I am on weekly taxol and am cold capping.
Yes, like one of the other people said: cold cap needs to be on for 30 minutes before chemo, then one hour while you have Paclitaxel, and then an hour afterwards. After that they turn off the cold cap machine but you need to wait with the cap on for at least ten more minutes for the cap to warm up a bit (otherwise hair will be pulled out when cap is taken off). So overall about 4 hours.
You can’t drive yourself there and back home.
They give piriton and anti sickness and steroids just before they administer the taxol. The piriton makes very sleepy.
They should give you a headband to protect your forehead.
Read up on cold cap at cancerhaircare website, and the Paxman website (Most hospitals in Uk use this but check yours does) lots of good info and videos.
Make sure the cap fits smoothly around your head. There are three sizes cap: small medium and large, and three sizes outer cap. If you lose some hear and get some thinning areas you can use a medical cap that surgeons work over you hair and then fit the cold cap.
Hope this helps.
Wishing you the very best and please do asn any other questions you may have
Hi
I am 6 sessions into weekly placitaxel of up to 12.
I am cold capping and haven’t yet experienced any hair loss.
The whole session takes from 9am until 12.30pm ish.
Yes you can drive yourself to and from sessions if you feel up to it.
Please ask if any questions!
So far side effects have been very minimal xx
I start EC x 4 fortnightly in October. X
Halfway thro the first lot @kerrylou1 
sounds like you are bossing it 
thankyou, I’m sure I will have more questions as it gets closer
Hi 
just seen the September 2024 chemo starters page has been set up so that is good to see there are already a fair few of us. (Not good at all but you know what I mean). I don’t think I’ve ever felt quite as alone as since my diagnosis. I have a wonderful husband & great friends. But they can’t help me as they don’t know what I’m going thro, not really.
Thankyou for this. I have not long found out about the Daniel Field products & had a consult with them. Just doing some further research as they seem almost too good to be true (and bloody expensive!). Good to know I’m not the only one! xx
Hi there I posted this reply to another back in March but think it might help you
After double mastectomy I had 6 sessions of ECT chemo, and used the cold cap and only lost about 30% of my hair.
It does add to time you spend there on the day as I had to have cap on 30 mins before the starting chemo and 1.5 hours after.
I have shoulder length and hair and was advised not to cut it
Make sure cold cap fits properly it needs to touch the head all over top and around the hairline too - this is very important as the cap is freezing the folicles to stop the impact of the chemo
Yes its uncomfortable for about 10/15 mins but you get used to it and you adapt to it
Use a gentle shampoo and try to wash hair only once a week and brush just once a day
I used a satin/silk pillowcase and tried not to rub or disturb my hair or scalp as little as possible
My hair did not fall out in lumps but it just thinned and I did not use scarves or my wig at all
Make sure hospital know you are cold capping ahead of appointments so they get right size cap ready for you
The experience was better then I had expected it would be and so I would say give it a go. I was 63 so didnt have childcare issues so not quite in the same position as you.
Here is a picture of me with my husband at my worst hair wise after 7 sessions of ECT chemo, and one from above taken by my hairdresser.
As you see no eyelashes or eyebrows but they grew back very quickly after it was all over
really wishing you lots of love and luck whatever you decide. xx
Hi
Firstly, i wanted to say im so sorry you’re all going through this. I have a 10yo & 9yo so can completely understand the worry around childcare & “will i still be able to be a good mum.” You absolutely will, but you might need help & a bit of planning.
I started chemo in June. I had 3 lots of 3 weekly EC first, and i then moved onto weekly paclitaxel - I’ve had 1 dose of this. I’ve already had surgery, so it is preventative chemo - i dont have scans, etc, but a blood test before chemo to check im ok to proceed. Dont forget to factor those into.
I haven’t cold capped, so my sessions actually in the hospital have been shorter than the others - one reason i decided against cold capping.
I have lost all my hair, but i cut it really short & donated it after my 1st dose of EC. This has made life easier, but i do look like i have cancer - theres nothing wrong with that i think but want to be honest.
Im not great with the science of it all, so my comments are more on the practical side of managing chemo.
I agree with previous posts that i would try & find childcare for the whole day of your chemo session if you can. I think i read somewhere that the breast cancer nurse or your local maggies centre might help with this if you’re struggling. If your 3yo goes to nursery, maybe they’ll arrange an additional day to start with given what you’re going through?
Like you said, everyone is different, but what im finding with the P is that im ok ish the day after, but day 3 im a bit sicky, but they give you tablets for that. I can still cope with basic life, but im not climbing no mountains / wouldn’t want to face soft play!! Im very tired but i try my best to walk once a day & do basic household chores etc.
Im going to be honest, i found EC hard & probably days 1-4 post dose i felt awful - think thr worst hangover that just wont end… i had awful migraines, was pretty useless, & and my husband / family had to be lead parents.
By the start of werk 2 i was a bit better (able to do a half a days work) & by the start of week 3 i was just tired - but what’s new there! I dont think the summer heat helped.
So i had plans in place to deal with week 1 and start of week 2.
Do you have any friends with similar aged children who can help? Maybe from NCT or playgroup? I’ve asked / accepted a lot of help if im honest. And people who i didnt think were that close have massively stepped up & been there for us as a family.
I know ive been very lucky.
Ive found it really hard not to be the super mum i expect myself to be, but like my consultant said, this is going to be a blip in a very long life & children are incredibly resliant. My view of failing them isn’t what they see. Their needs are actually very simple - they just want to be loved.
Ive found my first 10 weeks of chemo have gone super quick…
And finally, please make sure to look after yourself too in all of this. Xx
Ps sorry for the typo’s - chemo fog / fat fingers xx
Wise to do your research before buying the products as they are very expensive. I’d heard lots of good things and also had a consultation. I had just come in to some money so I decided to buy lots of products. I thought If I’m going to do this, why not treat myself to some luxuries. I’ve only just started using them so don’t yet know if they are as good as they say but they look and smell good! X