Hi November Starters - I am a September Starter (FEC-T plus targeted biological therapy because I'm HER2+) and have just had my 6th and final infusion (hooray!). I noticed the recent posts regarding hair loss. I'm afraid that as may have been mentioned before by me and other Members, everyone reacts differently to the chemotherapy, so it is pure luck whether you lose all your hair or only some, and if the latter, how much (cold-capping notwithstanding).
I can share my experience as an example of what can happen, but I'm afraid you can't assume the same will necessarily happen to you. I didn't cold cap and lost about 95% of my head hair towards the end of the first FEC cycle. A lot of my body hair also went during the next two FEC cycles, as expected. I was warned I would probably lose the rest on T, but I haven't so far, except for a bit more of my eyebrows and eyelashes during the first T cycle.
But they're still hanging on, if somewhat patchy and sparse (I use a L'Oreal Brow Artist kit to make the most of what's left of my eyebrows, because it is easy to apply, works really well in a situation where you still have some eyebrows left - and I think I'm worth it...!). In fact, some of my head hair and body hair now appears to be growing back, particularly on my legs where I'd rather it didn't bother! I suppose there's still time for what's left to all drop out over the course of my final cycle (Merry Christmas to me!) but I'm optimistic that it won't, having hung on thus far.
Anyone affected by significant hair loss who hasn't yet got a wig, and feels self-conscious about going out could consider getting a hat fringe, and/ or some good quality specialist headwear (e.g. hats and turbans), or a hairpiece, if you still have most of your hair but it is patchy or thin. These products are available from various online sources, though you'll have to move fast if you want them by Christmas.
Hat Fringes
Heather's Hair is a charity that supplies free human hair fringes, but they can also be purchased from specialist retailers. I have a 'cheap and cheerful' fringe from Bohemia Headwear (cost £10.00 for fringe, £1.80 for headband + postage) - and they are very quick at turning round orders. More expensive ones are available from Hats 4 Heads (though another September Starter was disappointed with hers), Simply Wigs (Gisela Meyer) and Suburban Turban.
Specialist Headwear - Hats, Turbans and Sleep Caps
Suburban Turban is the only UK based online retailer I have come across that supplies really attractive headwear specially designed for people affected by hair loss, but it is not cheap, prices start at around £35. The next best option, and cheaper (prices start at around £12.00), is probably Christine Headwear (I have some of their turbans), available from Trendco, Simply Wigs and Wigs Boutique.
There is also an American online retailer (Headcovers Unlimited) which supplies fringes and a much wider range of attractive headgear than Suburban Turban, as well as wigs and other products for hair loss, but they only accept payment in dollars (at current exchange rates - ouch!), you may have to pay import duties on top of this and the postage, and you're also very unlikely to receive your order by Christmas even if you order right now.
Sleep caps are also a good idea to keep your head warm in bed, to wear under scarves and hats to bulk them out and prevent irritation, and also to reduce the mess from hair shedding. They come in various designs. You can get these very quickly and conveniently by ordering online from retailers such as Bohemia Headwear or Annabandana, provided you don't order other bulkier items at the same time, because sleep caps are usually thin enough to fit inside an envelope that can be sent through the normal post. They're not expensive, but they're also not very thick, so you may find that like me you need to wear two or three layers in bed this time of year.
Hairpieces and Wigs
If you have lost most of your hair and want a wig, or want a hairpiece to cover bald or thin patches, it is best to obtain it through a hairdresser trained to fit and trim it to suit you, e.g. under the 'My New Hair' (Trevor Sorbie) or 'Strength in Style' (Toni and Guy) schemes, to avoid disappointment. Realistically, you probably won't manage to organise it this side of Christmas.
Expect to pay anything between £120-200 for a good quality pre-styled synthetic wig (it's not worth getting a human hair wig, which is a LOT more expensive). Plus you will also need a couple of wig liners, a wig stand, a detangling comb (be VERY careful when using, so as not to damage the cap), and special shampoo and conditioner to keep it clean. You won't need to wash it that often, unless you wear it a lot (your hairdresser will advise, there should also be instructions with the wig).
Sorry for lengthy rambling post, but hope this helps. [N.B. I edited this post on 28.12.16 to add breaks and headings to make it easier to read, and to add a bit more information in places]
Hi. I had my second round of FEC today. I did cold cap for both and have probably lost about half of my head hair...it is now very thin but not too patchy. The kids are helping spot bald patches and have recommended a comb-over! I still seem to have most of the hair on my body....although armpit hair is a lot more sparse. I am feeling pretty grotty this evening but have been given Emend so am hoping I won't throw up. I'm not sure whether to go full GI Jane now and shave off what is left on my head or cling on to what I have in the hope that the cold capping may help the hair to come back stronger?? I 'went public' with a chemo cap to do a couple of bits in town and, whilst I'm sure it's paranoia, thought people were looking at me. I think for the first time since the diagnosis I looked 'sick'. I wish I could be one of those women who rock the bald head / scarf look and look amazing. I just look like a cancer patient. But I'm sure I'll get used to it....I think it's a confidence thing. Hope you are all doing as well as possible and are ready to enjoy Christmas as much as possible. Xxx
Hi Skye,
it is suggested to wait until your chemo treatment is complete. As this is a dietary supplement, no scientifically based studies have been done to find out, whether it is safe to take during chemo.
I always rather err on the side of caution. I was on FEC all the way through.
Yes, the combination of of supplements I take is helping me. My energy levels, skin, etc are improving and holding up well. I am on letrozole now - so no more estrogen to support the skin, hair, etc. However, it might be an individual thing. I researched, in depth, how I can support my adrenal glands - as they often are at the base of severe fatigue. And the comination I take was recommended for that support. I still have some hot flushes, but they are very manageable and only 2-3 per day. Considering I went cold turkey after having been on HRT - that is pretty good. It is difficult to say whether the supplements have helped, as I started taking them the moment I came off HRT, before my op and chemo.
Of course, I still have bad hours and not so good days (Chemo finished Sept 1/rads Oct 26) - but the outer visible signs, such as hair are now ok. I have enough hair on my head, not to look like a chemo patient anymore. So that did not take long. I even had my first haircut!
Hugs
Sue x
Hi Ladies, not been on for a while, forgot my passwords, very forgetful at the moment, ?? Chemo brains.
Was quite sick after round 2 and out of it for the whole 7 days this time. But all back to normal again now. I managed the Christmas party, was lovely to catch up with all the gang, and all the GPs couldn't believe how well I looked (oops and there's me off sick) amazing what makeup and a wig can do, oh and the dark. Was nice to feel normal again, even managed wine and a bit of dancing 💃. And didn't get in until after midnight 😳.
Round three next Wednesday, so Christmas will be a quite one, sleeping on the sofa watching TV.
Hope you are all doing well. Xx
Hi Sue H-S
Saw your post re CO-Q10 with another member Bibby44 - it was back in July. I've sent her a msg but I dont know if she'll respond.
Did you find this helped you? I noted that you said you had to come off because it was interfering with your Chemo. I'm due to start Herceptin and 4th Chemo (which is Taxotere) on 4/1/17 and wonder if I should start on CQ-Q10 before that.
Thanks for any help/info.
Skye x
Im due to have found 3 of EC this week. I have had slight pain/ache in my wrists this week. Has anyone else had this? Is it another side effect?
Hi again all.
hope you're all doing ok. Everyone's a tad quiet. I've been in my chemo pit (as I call it) for the last week after chemo 3 last Tuesday. I'm slowly energing & feeling a bit better by the day. I seem to feel drowsy from the moment the drugs go in & don't really open my eyes again properly until day 4. I don't know if it's the unusual concoction I'm on or just me. I get nauseous but thanks to the anti sickness tablets don't throw up, then I develop oral & gastrointestinal mucositis. Am hoping to pop into my work Xmas do Thursday night but am now paranoid about picking up any bugs as I really don't want to be in hospital for xmas.
Take care all.
Hi again Snail888
glad that you have no itching. I had 8 injections post every chemo. I was fine until post chemo 3, after chemo 4 swelling started and slight itching. Chemo 5 it became a lot worse and they were stopped for chemo 6, as in danger of anaphalactic shock due to the cumulative build of the allergic reaction.
Hence I reacted so quickly when reading your post.
I am sad to hear that your BCN is not helping much.
Although mine was based at the Breast Care Centre and not involved on a regular basis, once chemo started. She was always there for me to phone and get advice, discuss my concerns with the treatment team on my behalf and then get back to me with relevant answers. This is also the general protocol - most are funded by Macmillan and a named BCN should be there for you to help you through all of your treatment. A BCN should be the central contact point to your multidisciplinary treatment team.
Please take the swelling seriously and get answers as soon as you possibly can.
Hugs
Sue x
Hi Snail888
Are they Gcsf injections? If they are - please call your chemo team and tell them and ask for their advice. Also put a call into your breast care nurse to get a message to the oncologist - whichever way it may work in your area
The bone pain can happen, but the swelling could herald an allergic reaction. Do you experience any itching anywhere, however slight, that you did not have before?
It needs to be checked out urgently.
Please let me know. My allergic reaction to Gcsf, which is relatively rare, developed over time and I had to stop them. Sometimes the allergic reaction can be cumulative.
Hugs
Sue x
ok. So as i said this morning I had a problem with my PICC Line last night. District Nurse came and looked under dressing and the whole line has come out !!!!!WTF no idea how it's happened , have not been doing weight lifting or over stretching... but the line has come back on it's self and come out completely!. DN said she'd never seen that before !
So obvs are all worrying about infection. I've got new dressing over arm entry and am to call my hospital in the morning !! Has this ever happened to anyone else ?
Not too much of a worry as next Chemo not till 15 th but of course it means i've got to go through the whole bloody line fitting procedure again !!! and really really hoping no infection has occurred !
oh well... just keep on keeping on my lovelies x
Hi all
Hope you're not having too bad a weekend. I'm getting very apprehensive now as due chemo 3 on Tuesday & I felt so rotten from the moment the drugs went in last time.
Weisehai5 I'm 43 & a few of us seem to be around the 40 mark. If you're on Facebook there's a page called Younger Breast Cancer Network (UK) you might want to join.
I'm also on Pertuzumab & Tratuzumab for a year along with Docetaxal & Cyclophosphamide. You're the first person I've come across (other than myself) on P&T. Think we're quite a rare group!
Had the Look Good Feel Better workshop Tuesday. It was really good & got some fab goodies. Strange sitting in a room full of bald women!
Take care all. xxxx
Hi ladies,
Lurking in the background, lol - it is so great to see how you are starting to support each other!
For the younger ladies you might find some others like you on this part of the forum -
https://forum.breastcancercare.org.uk/t5/Younger-women-and-families/bd-p/4449
I hope you do, however, although we all are not necessarily of a similar age, as we move through this journey -the thoughts, concerns and feelings are very similar - which is why the monthly chemo threads are of such great support for many.
Hugs
Sue xx
Welcome to weisehai5, sorry to have you with us but happy to help you through this journey. It can seem like a bit if a rollercoaster at times but we are l in it together which can only help to ease it a little.
Your treatment seems to be very different to mine so cannot really impart anything useful on that front, but happy to be a shoulder to cry on or someone to just cheer you up when you need it. 39 is so young to be going through this, hopefully you have a supporting family around you as this will help. Good luck with you treatment. X
Jacksprat, good to hear from you, I am now day 5 2nd FEC and running enough had a ridiculously emotional day 4, son came home from uni and it was all I could do to stop myself from welling up and crying, which is not like me. Need to get a grip today. Nausea and heart burn and general tiredness are the order of the day for the last 3 days so looks to be a repeat of the last FEC so far. Yesterday had that same craving as last time for a fish finger samdwich, th is time hubby prepared and already had them in the freezer. No heartburn with those babies!! I now have the omeprazol but not finding them very effective with the heart burn .
What is the situation with your Marrrow bone bun, has it spread to there too? Buying the wig early is a good move. I was in denial about my hair and having g thought that the cold capping would help was devastated when if started to fall out on day 18 first FEC. It is now shaved very short as was locking the shower and meant I was hovering it up all the time. I look like a prisoner of war ! Got the wig but not ventured out in it yet, mostly wearing brightly coloured beanies from Milletts which are lovely and warm, especially at night when my head gets cold. Good luck with you treatment. X
Roll on day 9 and relative normality,
Welcome to weisehai5, sorry to have you with us but happy to help you through this journey. It can seem like a bit if a rollercoaster at times but we are l in it together which can only help to ease it a little.
Your treatment seems to be very different to mine so cannot really impart anything useful on that front, but happy to be a shoulder to cry on or someone to just cheer you up when you need it. 39 is so young to be going through this, hopefully you have a supporting family around you as this will help. Buying the wig early is a good move. I was in denial about my hair and having g thought that the cold capping would help was devastated when if started to fall out on day 18 first FEC. It is now shaved very short as was locking the shower and meant I was hovering it up all the time. I look like a prisoner of war ! Got the wig but not ventured out in it yet, mostly wearing brightly coloured beanies from Milletts which are lovely and warm, especially at night when my head gets cold. Good luck with you treatment. X
Jacksprat, good to hear from you, I am now day 5 2nd FEC and running enough had a ridiculously emotional day 4, son came home from uni and it was all I could do to stop myself from welling up and crying, which is not like me. Need to get a grip today. Nausea and heart burn and general tiredness are the order of the day for the last 3 days so looks to be a repeat of the last FEC so far. Yesterday had that same craving as last time for a fish finger samdwich, th is time hubby prepared and already had them in the freezer. No heartburn with those babies 😀😀
Hi Gang,
Day 11 in the Big Brother House !! Oh sorry wrong show !
Day 11 after 1st Chemo (FEC). what a weird 10 days !! Generally not too bad...but had horrid nausea all the time it seemed but awful at night despite anti-sickness drugs! Had real emotional low last Sunday(day4). started crying as dog got mud on sofa !!! went downhill from there for most of the day. at one point i was laughing and crying at the same time! My kids thought i'd lost the plot! Really hated the fact that i couldnt control the tears.
Woke up on Monday feeling fab ! No hairloss yet to speak of but took girls + my mum wig shopping last Tuesday... so now have one ready for when i need it. Wednesday went tohospital to have line flushed ,also had chat about sickness and theyve changed my meds and now i'm much less nauseaous.(thankgod)
I felt i was bobbing along nicely...staying out of way of public on my low immune days and feeling ok. Then developed chronic lower back pain on Friday eve (day 9) and pains shooting down both legs. I could not get comfy and took paracetomol and crawled up stairs to bed and cried !!!! think this is the chemo attacking my bone marrow ! Anyway eased on Sat afternoon and woken this morning to no pain (Yipee)
However my PICC Line dressing has come away and my PICC Line is dangling down my arm. So i'm now awiting the District Nurse to come and sort it out ( i'm worried about infection!)
Snail88- Hi lovely lady. Sorry to hear whats been going on to ya hunny...veins and all. Hope you have a better day today.
Capelmum52- big love my dear
Hi to all new starters...hope we all have a fab Sunday x
Hello ladies, I just started my chemo on November 18th (taxol, 1 x per week for 12 weeks) along with Pertuzumab and tratuzumab every 3 weeks for a year. Just did my third session of chemo yesterday. Just found this thread and am glad of it. I am 39 and don't know anyone my age who has been through this. Thanks for all your posts. Super helpful. Sorry we have to be here, but happy for the support. I don't have any questions because you've already answered them!
Hi Elorac56,
Unfortunately so - for some it is worse than for others though. I worked full time the last 11 days out of the 21 day cycle throughout my 6 x FEC. It was not easy, but I managed. The breathessness is often because our red blood cell count drops. The red blood cells carry the oxygen around our body and to the muscles. As it takes a red blood cell 120 days from 'being born' to maturity and the availability to take up oxygen - it is only natural for feeling weaker and breathless. It will be very important to monitor your red blood cell count, which is usually done when your chemo bloods are taken.
So glad to hear that you had a port fitted - it will make things so much easier for you.
Hoping all goes well for you.
Hugs
Sue x
Hi Sue,
Thanks for that information. I am having a Portacath fitted before 2nd FEC which I am happy about as struggled to find vein for first FEC.
Is it normal to feel weaker and breathless as cycles go on?
Carole
Hi again Snail888,
Ah, no. Only once and it was ok. So I can understand why you worry. Especially as it must seem to you that they are hiding things.
Sometimes they might not be able to print results - so it might be an idea to contact your GPs practice and rquest it. You have the right to access to your results.
Overtired and tearful, is, unfortunately, one of the things, which hapen to us during all of this. Sometimes just for a day or so and sometimes more often.
All of this does take a lot out of you. Have you, by any chance, set up your private messenger settings yet?
If you are ok with it, I'll pm you....
If you have not and do not know how to do it - here is a link, which should be of help