@jbb I have just had my third EC and have cold capped for all 3. I lost nothing until day 18 after the first treatment when it started moderately but not so anyone would notice. It carried on quite heavily after the second treatment until about day 14 when it went to almost nothing. I have quite a big patch on the crown and thinning on one side particularly as well as all over but it is all easily covered with a wide hair band. No further loss as yet after Monday’s treatment so who knows what will happen 
Thank you so much for your experiences on cold capping - more that we have to cope with going through this.
I also wonder why some of us have EC rather than AC as all studies seem to show the same results regardless of tumour type 
I have learned from this forum that there are loads of different chemotherapy regimes and I don’t understand them. Some people seem to go every week, that must be hard, and have loads of treatment, some like me have 6, or 8. No idea but so long as it works then I don’t care!
The main issue I have had with the cold capping is I have found the uncertainty over whether it will work, should I do it/ carry on etc stressful and I could do without that. Part of me wishes I hadn’t started so I would then have had certainly from the beginning, and 2 hours less at the hospital each time, but I am where I am and still just about have enough hair to manage.
Just had the call and my white blood cells are a bit low but not too low to postpone my treatment thank goodness! Going to try and get lots of protein wbc boosting foods down me between now and Friday to make sure!
@pat totally get the constant uncertainty re if the cold cap will work. I’ve had times where I think should I just shave it off. However I’ve just asked the Doctor re he Docetaxel and she says although it does obviously still cause hair loss it may not be as bad hair wise as EC. Obviously we all react differently so there’s no guarantee how much hair we’ll lose but I think personally for me, if I’ve got this far on the EC may as well keep going and see what happens. If nothing else it’s supposed to encourage the hair follicles.
Hope everyone’s doing ok and managing to enjoy the sunshine (although not so great at night with the hot flushes!)
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@wjs I’m pleased you can go ahead with your treatment. It would be so disappointing to have to postpone. Odd to say that in a way as it’s the last thing we want to have but postponing prolongs the whole thing and you’ve psyched yourself up for it!
Thanks for that info about the Docetaxel. It’s encouraged me to go on. I too feel that I’ve done half so I might as well carry on. If it all falls out by the end of the week I might change my mind 
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We are all different on cold cap. The Paxman site gives you stats based on the drug you’re on. I think it’s around 85% of people on paclitaxel who will retain at least 50% of their hair and 35% of people on AC/DC who will retain at least 50%. As mentioned before I didn’t shed on Paclitaxel.
A recent study says that it might grow back faster (straighter) than without.
If you can it’s worth continuing as you might find it grows back through paclitaxel. I’ve had 14 sessions of cold cap so far and just lately really have had enough, but 2 to go so I can’t give in after all this effort. I’ve found it much harder than having the chemo. Yesterday was tough and I slept as much as could. The length is shorter on paclitaxel too.
Help this helps x
Wow 14 sessions. That is amazing and I do admire you for doing that many. I will be doing 6 and that seems a marathon!
@alig1961 I’ve not been on for a while as life has been busy - saw my son and grandson for the first time in 3 months - worked too hard last week and had session 3 of chemo on Monday.
I shaved my head after you - you were my inspiration. I still have a little stubble but virtually bald - must of the time. It was my birthday last week and wore my cap in the restaurant and got some funny looks but I ignored them all.
We took mum out for her birthday last night and just went topless! Just the head 
felt a bit conspicuous but actually was ok and better than sitting with cap on or a wig on! So I guess it depends how I’m feeling and who’s around. It’s flipping hard. But I feel more confident each time. I will still wear the wig even though I’m told it looks good it still feels wiggy and it’s hot!
Haven’t worked out what to put on my head cream wise - I think you mentioned tea tree oil - sounds harsh but not sure? Obviously suntan cream but not sure to keep it moisturised
Attended online look good feel good seminar today - I did learn you can request Aveeno products from your doctor on prescription- haven’t tried but thought worth sharing. The course was good and will try a face to face as really will need to practice drawing an eyebrow 
.
Third session was Monday and feel utterly exhausted. I feel sorry for those feeling nauseous- that’s horrid and hopefully the symptoms don’t last too long. I can cope with tiredness but never done so little in my life!
Take care all you lovely people. Sending hugs x
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@jbb that is tough having that many and doing the cold cap too - well done! Like Pat says I’m fed up with just 6 but realise a lot have many more than that so really admire anyone getting through so many.xx
Hello everyone. I have not long found this forum and reading everyone’s experiences is so helpful. I started chemo on 25th June and am due to have my third round of EC this week. I was due to move on to 3 rounds of docetaxel next (one round every 3 weeks) but my oncologist has today changed that to 9 x weekly sessions of paclitaxel instead. He said that it’s due to some people having negative reactions to docetaxel. Has anyone else has this or their treatment changed?
Also, I’ve had Filgrastim injections between the EC cycles - 3 injections after cycle 1 and 5 injections after cycle 2. I didn’t have any side effects after the 3 injections and mild side effects after the 5 injections. Has anyone else had these and still having bone pain 9 days after the last injection? I’m having back pain and don’t know whether it’s related to that or something else.
Not sure about the EC stuff but placitaxel is supposed to be lesser side effects than the docetaxol and milder on the hair if you are cold capping. Xx
xHi @rrey i have those injections - 7 after each treatment - my 3rd lot start tomorrow. I can honestly say I have not noticed anything after do doing ok. I’m on the docextacel every 3 weeks for 6 sessions.
This session 3 knocked me for 6 a bit but only tiredness so hoping not to get any others symptoms after the injections. Good luck to you x
Hi
I have those injections but for 7 days each time starting on day 3. I find that I get back pain on day 9. The pain comes in sharp stabbing pains across my lower back from hip to hip and can sometimes make me yelp. They can come over me like contractions. It’s very odd.
I can’t get over how many side effects EC and injections have given me. The pains normally only last a day or two. I know that when I feel the pain my white blood cells are on the rise, so I see it as a good thing. I’ll take the back pain over the nausea any time.
Xxx
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Hi @rrey … welcome to the group! 
I think everyone’s experiences are so different … I was on weekly paclitaxel… but my oncologist changed it last week as I was reacting. So now on Abrexene (which is a paclitaxel but mixed with something, alumbine I think, to stop reactions) its so confusing so just got to put trust in what they are telling us!
But on a positive I had my new concoction yesterday … immunotherapy, abrexene and carboplatin yesterday and it was smooth sailing finally 
… down side was I had a nap when I got home but then was awake until 4 this morning 
so going to try really hard to stay awake today! Also I only have one more of these and then my regime is changing again … 
trying to keep up!
Other news … my FNA came back inconclusive… they couldn’t get enough cells … so booked in for another CT scan in three weeks … so still waiting but keeping everything crossed 
Also just wondering is anyone getting the urge to do lots of shopping … like for me I feel like my wardrobe doesn’t go with my new look … but then I’m not really sure what will but I’m being drawn to really bright dresses and big feminine skirts! Maybe it’s a subconscious way of trying to cheer myself up a bit … dopamine dressing 
Hope everyone else doing ok? Xx
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I feel like my wig is too glam for my clothes and so I’ve hit Vinted hard, looking for flowing dresses and skirts. . I’m not a girly girl either. Xx
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Hello Team June… whooo I am halfway through. Round 4 done and ready to move onto 4 x pax… with a whole new set of symptoms no doubt (really not looking forward to the steroids - the pharmacist told me this week that it was 3x the dose with Pax, ughh)
Glad peeps are doing the best they can. The summer holidays do suck though, It’s hard to see everyone else having fun … everyone going off on holidays (we were meant to go to Italy next week)… it’s horrible but that’s when I think about my list of all the lovely things I’m going to do next year.
@pat make sure you stay awake for the sex scenes in Brigerton at least !!!
@charlie22 I have bought myself a whole load of hippy stuff from Vinted mainly to cover my picc line and to have loose clothing. I now look like a different person when I go out - which is what I always wanted… but I am getting used to elasticated waists which could be dangerous with my crisp obsession!!!
Another question for you lovely lot - friends!! Anyone had any issues with any of them? I have two Uni friends who responded to my round robin type messages at the beginning but then … nothing!? I questioned them on it when they messaged me with birthday wishes (after nearly 2 months of nothing) and they said they thought I wanted ‘space’ … I’m finding that hard to believe as I’ve always said I needed people to shine the light for me and it is upsetting. They are meant to be coming to see me on Saturday but I feel so upset and angry, I’m not sure I want to see them + I have to go through the whole loooonnngggggg story/journey with them because they haven’t kept up with what’s been going on and that feels exhausting. They are generally quite self-centred anyway but honestly, this really is taking the pi@s. Anyone else have anything like this? Or any advice you wise ladies!!
Happy Thursday xx
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Hi
As someone who’s had 12 rounds of paclitaxel I can say my experience was OK. You get two days “off” per week when you feel normalish and can get out, walk etc maybe meet up with friends outside. It’s not as dose dense at fortnightly docetaxel hence the weekly routine so you get the same dose spread over the two weeks.
Also studies have indicated that paclitaxel might be more effective done weekly than spread out. I wouldn’t worry about the change in regime as the drugs are both taxols and have the same purpose and efficacy. My course shrunk my tumour by 80% and it’s hormonal. We’re all different but just giving you the personal upside I had.
The levels of nausea aren’t half as bad as on EC/AC. I didn’t need the growth injections, so you do have to watch your immunity and neutrophils - masking up etc
I was fine when I got into a routine. Week 6 was my hardest when I thought I would be celebrating being halfway through but all it made me feel was oh no I am only halfway - if that makes sense. By week 9 I felt so much better mentally and I gave up watching my hair as it stayed put with cold capping. As I’ve mentioned before, those who have been through EC or AC can find their hair grows back on paclitaxel so you might find you end the course with new hair.
Hope this helps. Whatever chemo regime we’re on it’s not fun, but we just have to plough on.
I’m in the south and this heatwave is making me crazy 
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Friends… I think this is a time when you find out who they really are.
I’ve been surprised by the check ins from people that I hardly know and then others I’m close to who have kept their distance or not gone the extra mile - and that’s also family members. I have one friend who checks in and visits me regularly and I love her for it especially as she works too and lives a relative distance from me.
Also when you’re going through this you need your friends to understand that you will be flaky and cancel last minute because you’re tired, not well or just anxious. Plus we’re immunosuppressed and need people we trust who won’t bring their infections with them and land us in hospital or having to pause the chemo.
Also you want friends who have gone through this but at the same time you can’t lean on them because for them this is a reminder of what they went through so whilst you might have a dozen questions you want to ask them you can’t as you know they might find it triggering.
It’s a very lonely place to be.
All I can say is be honest and perhaps before they arrive because it’s good to clear the air so that you can have a special day with them.
I think we’re all in the same boat here and why sometimes a forum can help as you can be relatively honest with strangers…
I can’t remember if you’re having counselling. I’ve talked some of this through with mine
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I’m waiting for the big shed this week, but the thought of wearing a wig in this weather makes me want to hide in a dark cave