October 2016 starters

[swampy1901]

Hi Gracie

I have been given Emend since the beginning but the additional anti-sickness meds were to cover the time after the Emend ran out. It's all a matter of finding what works for you - I still felt nauseous despite the Emend and threw everything else I had at it - which was fine for the first evening and got me over the worst of it. As others have pointed out elsewhere on these boards - there is no reason to be sick or nauseous - it's simply a matter of finding what works for you.

I will also own up to the midnight feasts  but whatever it takes to manage this beast - who cares!? but again it is only while on the steroids!

I have also invested in a lint roller - I was fed up with having to do gymnastics every time I noticed a hair/loads of hair on my shoulders. An MX and a PICC line are not very conducive to the stretching and limbo-tastics required to feel neat and tidy!!

[maryminder]

Hi All

I had my second EC on Monday and up until today it's not been too bad, have had my steriods adjusted so coming off slowly and have been doing my injections every day, nausea has not been to bad and my appetite has been fine, but now It's nearly 3am and have been awake most of the night, sore throat, sniffles and a cough have checked my temp which is fine at around 36.6, my tissue expander is painful but managable, if I feel the same in the morning will ring the unit and see what they say.

Agree with everyone re the hair, have been wearing a sleep cap (so much better than a faceful of hair) and have a couple of thin caps for around the house during the day, have managed to venture out on my own with a hat but not my wig yet, it's my birthday on the 19/11 and we have tickets to see Billy Connolly the following week, I am determined to go providing all is fine could do with a good laugh.

Going to try and get some sleep now, hugs and best wishes

Mary xx

[Sus12]

Thank you Aine.
Hope all goes well for you on your T cycles. Let us know how you get on.
SueF x

[Aine]

Hi from the September thread!  I have done 3xFEC and will start 3xT and H on 21st November.

Ladies I know many of you are facing the problem of how to cope with no hair.....

Just a wee tip - I got a great Halo wig from Headcovers.com.

It is a half wig to wear under a hat and it just looks exactly like my own hair did.

I feel perfectly comfortable wearing it under a beanie or one of those knitted hats with a pompom.

It cost around £60 and I had to pay £15 customs to the postman!  

But it is the only thing allowing me to appear out in public.  I had to order a new wig - mine was too blonde too shiny too thick too visible from space.

Just remember the circumference of the headband must be big enough to fit your head.  

I had previously to send a hat wig back to another company as it was only 52cms - far too tight - should be around 58cms.

The day I was told I had to endure Chemo I went straight to Primark and bought 10 hats - for the princely sum of £20!!!  They're all perfectly normal hats - not like some on the wig websites.  I couldn't bring myself to wear a scarf - the hats look much more normal.

The worst part of all this torture for me was losing my hair.  This might make it a bit more bearable for some of you I hope.

X

Aine

[Sus12]

I might ask my hubby if he's going to dye his beard pink! 😄 He definite wouldn't brave the shave though!
SueF xx

[suebond88]

Hi everyone,

noticed my shedding a little bit more today too - nothing too major at the moment though.  Have an appointment with my hairdresser on Wednesday to have it tidied up as it is very unruly, so will probably go shorter.  Will see how it Is then, and possibly ask him about the wig lady he'd organised.  Like you all, Christmas is coming!!  Plus it's my birthday in February, and I know it's a good way off, but if we are able to go out for dinner or away it would be good to look good.

on a lighter note, my son is as I type, doing his Brave the Shave down in London, and having his beard dyed Pink!!  Will ask him if I can post a photo.

a worried mum at the moment 😊

SueBxxx

[Sue C]

I'm sure you're be fine. I don't think anyone will notice your wig. I wear a scarf, so much more noticeable. Feel generally people are much kinder to be than before though x

[Sus12]

Hi Sue. Thanks for the reassurance. That's what's so lovely about this forum it helps when people are a bit further on or finishing treatment and can give the rest of us some reassurance, helpful information and hope! I know I will find it pretty impossible to go out into the world with a bald or even a clipped head! I wish I was that brave and bold (and bald! :D) I really admire those who can but I just can't :(. At least my wig hairdresser is clipping it on Weds and then fitting and cutting my wig but whether I can then brave going for a coffee at a place round the corner with my sister (who is coming with me) I'm not so sure! I hope so 🙂
If it involves cake and I'm not still feeling so nauseous it might help my anxiety! I pretty much guess that no one will notice though as they don't know me. It'll just be me worried in case it moves or slips or gasp falls off!
Sue F xx

[Sue C]

Hi Sue

It is really upsetting when you lose your hair, but I just wanted to say that it does get easier. I'm a bit further down the line than you in respect to treatment, and found once the hair has gone and you accept the scarves/wigs it's ok. I still find it hard to go out in public but that's just me. Now looking forward to it growing back.

Hugs x

[Sus12]

Oops sorry realised I sent the message twice!
Def chemo brain in overdrive 😄
SueF xx

[Sus12]

Lol def having a bad hair day :D. Or a bad hair few days! Sel I've been in floods of tears over my hair for the last week but the clumps coming out finally pushed me over the edge yesterday 😞 . It's driving me mad with fine hair coming out all the time all over things so think my hair is similar to yours but straight. It's so tough but now I've had enough. Time to get it clipped and try on my hats! Gracie do you have a nice hairdresser that could do it discreetly and you take a hat in with you? Other than that if your son is ok to do it put some makeup on and dangley earrings and pour yourself a small glass of wine for Dutch courage and say to yourself that you are taking control of your hair now!
I've also had Emend for the 1st chemo and this one but just for 3 days as they said it only works for 3 days ???!!! Is that true or is it as I suspect just down to cost? Hmmmm. I think my hubby and I worked out that it costs £500 for the 3 Emend tablets as I know they're very expensive and they are very reluctant to give out any more. Still been very very sick on them though. They haven't helped. I'm also on steroids and Odansetron for 3 days and then I'm on Domperidone instead of the Metadopramide I had last time as they were useless but don't start those until tomorrow + the self injected g-csf injections for 7 days. Yippee can't wait 😞 I hated doing those last time.
Hugs to everyone who needs one 🙂
SueF xx

[Sus12]

Lol def having a bad hair day :D. Or a bad hair few days! Sel I've been in floods of tears over my hair for the last week but the clumps coming out finally pushed me over the edge yesterday 😞 . It's driving me mad with fine hair coming out all the time all over things so think my hair is similar to yours but straight. It's so tough but now I've had enough. Time to get it clipped and try on my hats! Gracie do you have a nice hairdresser that could do it discreetly and you take a hat in with you? Other than that if your son is ok to do it put some makeup on and dangley earrings and pour yourself a small glass of wine for Dutch courage and say to yourself that you are taking control of your hair now!
I've also had Emend for the 1st chemo and this one but just for 3 days as they said it only works for 3 days ???!!! Is that true or is it as I suspect just down to cost? Hmmmm. I think my hubby and I worked out that it costs £500 for the 3 Emend tablets as I know they're very expensive and they are very reluctant to give out any more. Still been very very sick on them though. They haven't helped. I'm also on steroids and Odansetron for 3 days and then I'm on Domperidone instead of the Metadopramide I had last time as they were useless but don't start those until tomorrow + the self injected g-csf injections for 7 days. Yippee can't wait 😞 I hated doing those last time.

[Gracie]

Swampy,, the oncologist prescribed Emend this time, and it has made a great difference. However, I am feeling rough at the moment, but I've been on my feet all day, so have probably brought it on myself. When I was feeling very bad after the first EC, I was prescribed Ondansteton, but it made everything much, much worse. I felt that my entire abdomen was filled with gas. I wasn't pleasant to be near, I can tell you.

That's a good idea about the sleep cap. I'm not cold capping as it would have come out in any event due to my chemo regime. I'm losing the battle at the moment as it is coming out very quickly now. I have something as a dilemma as my husband has to go away on business tomorrow afternoon for a few days. I would prefer him to shave it off, but it seems a little premature. My eldest son (19) says he will do it. But I don't want to put this burden on him. I don't know if I will be more upset than I think I'll be. Perhaps it will have mostly come out by tomorrow anyway.

Sue (Sus12). I'm very hungry all the time when I'm taking the steroids. I had to get pout of bed at about 4am this morning as the hunger was causing actual pain. I tend not to eat much in th evenings though, as I tend to feel more nauseous then. 

Have you been prescribed Emend? If not, do push for it. I felt dreadful until Day 11 last time - everything smelt and tasted terrible. I couldn't even drink tea. It has been no-where near as bad with the Emend. 

Can you ask for a port a cath? I asked my oncologist for one straight away and she agreed. I did feel anxious about the procedure to get it in, but it was much better than I feared and it has made everything so much easier. Maybe worth considering.

It looks as if we are alll having a bad hair day today!!

Gracie xx

[Sel84]

Hi Sue,
I feel like we are on a similar plan. Just had my second chemo this morning, went better than the first one as they didn't have trouble finding my veins. But I don't feel as good today as I did last time on the day of chemo, feeling quite sick and not great.

Having trouble with my hair, I am constantly picking it off my tops and things, it's quite matted and loads is falling out, however it's looks like I still have hair. Pretty much got to the point where I don't want it but don't know when to shave it.

Hope you are feeling better Sue
Sel x

[Sus12]

Gracie the steroids will make you want to eat more but then you do need them. Try not to worry about your weight too much, you will lose it again. Maybe try and eat 'healthy' carbs a bit more but allow yourself treats as we need them at the moment! I'm so sick again after yesterday's 2nd chemo and can't face another 10 or 11 days like this again 😞 I can't eat much at all only dried toast with a bit of marmite or Carrs table water biscuits but I would rather not have the sickness and be able to eat! If things don't improve by tomorrow I'm going to ask for an anti sickness injection!
Thank you for your thoughts Lisa it's very much appreciated 🙂 . I'm on extra steroids too this time so hoping they help. I had a PICC line in but they found it was blocked yesterday and had to take it out so they had to go through a vein yesterday. Back in hospital to have another PICC line in on the 25th before my next (and last!) FEC and then the dreaded 3xT but trying not to think about that....! I'm feeling like a walking colinder at the moment with all the blood tests, surgery, biopsies, cannulas and my g-scf injections! 😄 . More hair coming out today so don't think my hairdresser and wig man will need to clip my hair on Weds...I don't think I'll have any to clip! Fed up with it now as every time I even touch my hair fine strands just fall away. I never thought I'd say this but I'll be glad now when it's clipped off! I'll still hate it but will just have to hope he does a good job with the wig 🙂 . Be strong, I'll be thinking of you. This will all be over in time and we will be well!
Big hugs to all,
SueF xx

[swampy1901]

Hi Gracie

Haas your onco guy given you some alternatives to take for the sickness/nausea? Such as Metoclopramide or Ondansetron or Lansoprazole?

The Lansoprazole is meant to help with heartburn and my chemo nurse said to take it everyday but in my case - it's deciding which is easier to live with regarding side effects. It tends to move things on in my case (not to put too fine a point on it!) so that I dare not be too far from the loo! Not taking it means I need to use Gaviscon depending on what I eat!! So as we are all continually finding out - side effects for everyone are different - and it's learning to live with what feels most comfortable for us on a day by day basis - I can eat something in the morning and four hours later it tastes/smells revolting. Can't win!!

As for the hair I'm cold capping but am still shedding hair but have started to wear a sleep cap to bed to catch hairs and also because my hair feels less wild and tatty in the morning by doing this.

The weight gain is also up and down - mainly because of the steroids - but in the grand scheme of things finding food that I can eat without heartburn is more important to me right now so as long as I don't put on too much then I'll cross that bridge later.

[Lisa46]

Hi Sue, glad your 2nd one is over with. I have a Picc line and it was much better than fiddling about with my veins last time. I too am losing hair now and I went with the cold cap yesterday but I struggled much more than the first time. I have the same sickness tablets but have 2 extra days of steroids to ween myself off rather than coming down with a bump. I've got everything crossed for you Sue for the next few days. I feeling nervous but no I'll be back on track in a few days. Good luck.

[Gracie]

Mary, fingers crossed for your sister.

I had my 2nd EC on Wednesday. This time, I was prescribed Emend and it has made quite a bit of difference to how I feel. I still have some nausea, heartburn and excess gas floating around the system, but nowhere near to the extent I sauffered from these things the first time around. I do seem to feel more tired though. I'm having chemo at fortnightly intervals, so I'm not really having the chance to get back to normal before I'm hit again. I'm a bit concerned that the nausea will come back with vigour tomorrow as I had my last Emend tablet today. I was given another pack as I have to take one before I go in for my next chemo. I'm wondering whether they might sanction me taking those if the nausea returns. Does anyone know?

My hair started falling out a few days ago. I had it cut shortish a few weeks ago. It is very fine, but there is a lot of it. You can't tell at all that I am losing it at the moment. However, it is becoming a bit of a pain. When I turned over in bed last night I had a face full of hair which had stuck to the duvet cover and it is sticking to clothes etc. When do you reach the decision to shave it all off?

I also have a question about weight gain. I am currently overweight (size 16) and I was working on that before chemo started. I had lost about 10 pounds and it was really noticeable. I was eating really healthily, but that has fallen by the wayside a bit as I am eating what I can/fancy, and that usually involves more carbs and sugar than I should be having. Nausea makes me eat carbs rather than prevents me from eating, unfortunately.

Anyway, the morning after my first chemo, I had put 5lbs on. I kid you not. I was horrified. Gradually, over the fortnight, all of that weight came off and when I was weighed before the second chemo, I weighed exactly the same as before the first. The morning after my second chemo, I was 5lbs heavier again and I am still that much up this morning. What's going on? Is it fluid due to the steroids plus not moving about very much? I would like to understand what is happening as I would prefer not to put on any weight, or at the very most, only put on the 10lbs I had lost. I know I have to get all the excess off when the treatment ends.

Gracie xx

[Sus12]

Some Boots stores have staff trained to help women with bc with makeup advice etc but don't know how you find out where. Might be more info on the Boots website. Bobbi Brown are very good and have offered me help when I need it especially brows and eyes but I know they're not everywhere and are in the bigger stores like John Lewis and maybe House of Fraser I think.
SueF xx

[suebond88]

Hi Angie

yes, I've contacted my local LGFB workshop, but they were taking bookings for February!!  Not really much help for me ..... I have made contact with a few local salons and am waiting for a response, in the meantime when I next feel like going into town I'll pop into Superdrug and Boots..

i haven't done much today either ...just vegging and pottering👍🤕

SueF, sorry to hear that you weren't able to coldcap again and that they couldn't use your picc line - I was canulated but it took 3 attempts to get into a vein😒 sore.

Sue Bxx

[Sus12]

Well got through 2nd FEC ok so far......! More and slightly differebt anti sickness been prescribed this time so hope it works better. Hope yours hss gone ok today Lisa. I had a bit of a bad day today as for the first time when I gently brushed my hair a lot came out. Similar to you Angie, I've had minimal.loss until this morning and then it went into overdrive! Still got a reasonable covering but very thin esp on the top but no bald patches so far. As it was so thin they weren't happy to use the cold cap this time in case I got freeze burns which they said could damage my hair follicles more and could cause problems when it starts to grow back. Have no idea if they are right or not but went with their advice 😞 . Disappointing but there you go. Expected anyway. My PICC line was blocked and they couldn't unblock it so had to have the drugs into my vein with a canula and the OICC line removed but the oncologist booked me in to have a new PICC line which will be done before the next chemo.

Not a happy morning!
Mary hope your sister is ok. It's so hard and the waiting for results is awful. Fingers crossed for her.
Best wishes for tomorrow Sel. Hope all goes well.
Hugs,
SueF xx

[Angywd]

Hi everyone 

SueB have you looked into the look good feel better workshops? I'm booked into one in a couple of weeks and they go through all beauty techniques and you come away with a goody bag too!  I've never been able to do false eyelashes, I have got some ready from superdrug called Looks so Natural by Kiss and was advised the best glue is called duo.  I watched a YouTube demo by a lady who had no lashes to stick them to but I still have mine so holding off for the moment... Thinks it's definately a 2 person job until you get used to them! 

Wearing my wig at home today, I have to get used to the feeling of wearing it and my own hair is looking dire 😱 Too scared to wash it! 

Have managed to do some washing and a bit of tidying, that's it for today.  Feet up awaiting the grocery shopping delivery  😌

Hugs

Angie

x💞X

[suebond88]

Good morning everyone.

day 2 post 2nd Chemo, woke up flushed (steroids I think), and more importantly my eyelashes are disappearing! 😒 Anyone know anything about false ones?  Head hair (touchwood) seems to be hanging on in there, but will go and get it tidied up at my hairdressers - it is short, but a bit wild at the moment,  I need it taming, and I think the only way to do that is to trim off the ends...

SueBxx

[Lisa46]

Thank you Sue. Thinking of you too. This forum has given me great comfort. Thank you for your messages. X

[Lisa46]

Thank you Sue. Yes I'll be a third of the way after today.

[blueash]

Angie, the claritin is a hayfever tablet they takes away most of the aches pains that you get from the tax or the g-csf injections. I had both for all of my treatments and I cannot believe that I have not mentioned it on this thread before.  I must have put it on every other thread I have posted on!

[Sus12]

Thanks Sue and Lisa. I had mine cut from shoulder length to chin level after never having my hair shorter than that and it's been easier to cope with my hair shedding rather than it being longer. I think now that that would have been worse. My hairdresser is clipping (not shaving!) my hair next Weds and then fitting my wig. It will be hard and I know I'll be upset but now it's going fast anyway I just want it off but hoping it'll last until next Weds, so it will be cut very short but then I'll be able to walk out with my new hair. My sister is coming with me for emotional support as l'll need it :(. I know it's not the same I agree with you Sel and I will still struggle and I'm sure there will still be times when I feel upset about it but feel I'll cope better with the wig. I'm worried that I'll feel so unfeminine and unattractive with no hair even though my hubby and family have assured me I'll still be the same. Trouble is I won't feel it :(. By next ah though you will have finished your treatment and your hair will be growing back and you will be used to your wig so you will be a beautiful happy well bridesmaid :). Christmas won't be easy this year but I'm just trying to accept that others will need to help and they want to so I know I must let them even though that goes against my natural instincts! And yes thank God for Internet shopping!
Big hugs. I know it's not the same when we're just texting on here and not in person but I'm thinking of you all,
SueF xx

[Angywd]

Hi everyone 

Seems like all of us cold cappers are still experiencing substantial hair loss.  I thought I'd got away with it when I got through to 2nd FEC last Friday with very minimal loss,  but it's gone into overdrive in the last 3 days.  Like many I still annoyingly have hairy legs but am thankful that I still have eyelashes and eyebrows for the time being...  I swore I wouldn't get my hair cut no matter what but it's not fair to put the trauma of dealing with matting onto my daughter to deal with, so I'm going to have it cut to chin length from past my shoulders 😰

I know we are all around the same stage, just having had 2nd chemo or having it this week.  The end seems such a long way off and I know I for one am worried about how I'm going to cope with Christmas but we just have to get on with it don't we....thank god for Internet shopping! 

Hugs to all

Angie

[Sel84]

Hi Sue and Lisa,
I hope your second cycle goes well, I too have my 2nd one on Friday. Have been feeling sick and tired today which has thrown me a little as I have felt fine for the last week or so but I am very anxious about my hair coming out so I think it is that which is making me feel sick. I hate the feeling that it is out of my control and I can't do anything to stop it from coming out.

I have been in two minds about having it cut shorter (I have already had it cut to my shoulders) I feel like it is going to come out soon so may as well cut it off and get used to it but then at the same time I can't bring myself to get rid of it. It really upsets me and I feel like I am going to struggle without any hair. I have scarfs and a wig ready but it won't be the same. My sister is getting married in May and I am a bridesmaid and I hate that I won't have my nice long hair for it, I will no doubt be wearing a wig.

I think that Christmas will soon be here then it will be January and my last treatment will be nearly done and my hair can start to go again. It is easier to break it into little stages.
Sel x

[suebond88]

Hope it goes well for you both tomorrow Sue and Lisa.

that's exactly what I said when I'd finished - 2 down, 4 to go 🤕  We're strong enough to cope with it all.

SueBxx

[Sus12]

I hope that's the case Lisa! Was so sick for 10 days after the first FEC. They're changing my meds this time so hoping for the best. Hair thinning a lot now despite the cold cap but I'm continuing with it anyway for at least this next one. Not expecting to keep my hair though. Still have body hair but would have rather have lost that! 😄
Glad your second one went well Sue B. Hope the sickness stays away for you this time.
My 2nd one tomorrow too Lisa. Not looking forward to it but it'll be one less. Hope it goes well for you.
Hugs to all for this week,
Sue xx

[Lisa46]

Best wishes Sue. I holding on to the words on my Oncologist who said many patients have a easier time after the 2nd treatment than the 1st time. I have everything crossed. My turn tomorrow.

[suebond88]

Good Morning everyone,

had my 2nd FEC yesterday, went well (as these things go), I cold capped again as I too ( at the moment)  have a full head of short blonde/grey hair.  I am loosing body hair though.  Feeling heavy and a bit zombie like this morning, but otherwise am ok.  They've changed my anti emetics and am so far not nauseous - have never in my life taken so many tablets, but I suppose I do need them.

hugs to everyone that needs one

sueBxxx

[Lisa46]

Hi Skye. Did you try the Cold Cap? I am due my 2nd FEC tomorrow and am very lucky to have my hair in tact. I do have an amazing wig on stand by. Not looking forward to the treatment but at least I know what to expect and can prepare things at home. If you go ahead with your hair appointment then I wish you well but maybe if you didn't start with the cold cap you may be able to next time. Just a thought. Best of luck getting the wig, I'm so happy with mine. Lisa

[Angywd]

Hi Blueash

thanks for the heads up re the T chemo, I have one more FEC then 3 X T.  Haven't heard anyone saying about taking Claritin? What is it taken for?  

Having to accept that I have to get my hair cut....😰 It's past shoulder length and I'm going to get it cut to jaw length, I can't cope with all the matting when I wash it and more is shedding every day.   I hope to continue with the cold cap but I do feel I'm fighting a losing battle....

Having a very low period, feel a bit like pond life..... No energy, not sleeping and feel like I have the worst hangover without the fun bit. Roll on next week when hopefully will start to feel better.

Hugs to all suffering the same awful chemo effects

Angie

x💞x

[blueash]

Angie I had all T (docetaxel) and had  no sickness or upset tummy,  it is much kinder to the hair which is why I think I had a very good result wilth the cold cap. The worst part is the fatigue and the feeling that you have been run over or beaten up. Everywhere hurts and you are very weak, for me days 3 til about 8 were bad and then I gradually got better. I found that the claritin and nurofen sorted it all out. After the first dose I took the pain meds before the steroids wore off. It is not time to be "brave" or "tough it out" that is why they make pain killers so take them til the worst is over! 

[maryminder]

Hi All

Second EC done yesterday, went on my own this time as Hubby has man flu and is banished to within twenty feet of me , meds and injections all sorted this morning so will go out for a walk this shortly and then just relax for the rest of the day and maybe potter a bit, can't stop myself sometimes.

Nurse was able to answer my questions that had made a note of over the last 3 weeks, I asked about my hair and she said not to leave a stubble can as this can cause pain and headaches, best to leave it just long enough so that it lays down, so I am going to trim mine again and wear sleep caps at night (fed up turning over and getting a mouthful of hair off the pillow) and pop on a hat when I go out. Also have my wig ready will start by wearing it around the house. We have a few things that were booked before BC so asked if it was advisable to go (concert/theatre) generally be sensile see how I feel at the time (both in what should be my good weeks) and any doubts don't go.

Gracie: My little sister had her call back appointment yesterday and was told there is an area in her left boob that is causing concern, she saw the Consultant, had a scan and biopsy, so no definate answer for another ten days, she is coming over tomorrow so big sister hugs are in order and I will try and answer any questions she may have, will be keeping everything crossed.

Best Wishes and Hugs Mary xx

[OldDawn63]

Hi Skye - you don't have to go quite as far as a skinhead, a short crop will be fine with the wig. I had mine clipped to about 3/4 inch (I think it was No.4 or 5 on the clipper setting) and I didn't look anything like as bad as I feared with short hair. By then it was falling out fast, so it was academic as I started wearing the wig straight away. I still have some hair, and it is growing, but it is very sparse and don't know how long I will keep it now I have started T and Herceptin cycles. Hope this helps.

[OldDawn63]

Hi Skye - you don't have to go quite as far as a skinhead, a short crop will be fine with the wig. I had mine clipped to about 3/4 inch (I think it was No.4 or 5 on the clipper setting) and I didn't look anything like as bad as I feared with short hair. By then it was falling out fast, so I started wearing the wig straight away. I still have some hair, and it is growing, but it is very sparse and don't know how long I will keep it now I have started T and Herceptin cycles. Hope this helps.

[fairycake2]

So sorry for that, I'm sure the hair loss is the most difficult thing to bear, it's not a trivial thing and does not mean you are superficial if it upsets you - it's a huge part of our identity! Think about what we played as little girls - we played dolls and we mostly fussed with their hair. Of course, we can learn to cope and to be'brave' when it goes, but we can  mourn when it happens.  I am beginning to wonder whether the cold cap is actually just a cruel distraction, nearly everyone loses their hair regardless, it just seems to prolong the agony and give false hope.  Anyway, big hugs to those of you waking up this morning to hair loss. xx

[Sus12]

Hi Angie.
I'm trying so hard to put a brave face on but after sitting watching the TV last night with my hubby and finding my hair coming out constantly by just touching it (I know I should leave it alone!) I had a bit of a meltdown :(. Not like me at all so I know the hair loss is affecting me badly. I hoped I was stronger than that about what seems to be something so superficial and the emotional and psychological effects of it have taken me by surprise.
I found that breastcancercare.org.uk have a pdf downloadable info sheet on Taxotere (also known as Docetaxel) and side effects.
Big hugs,
Sue xx

[Angywd]

Hi, I've cold capped twice now and both times the nurse was extra careful to make sure there was no air bubble and it was pulled on so tightly that it had ice in all my hair when it was removed. I have slight bare patches over the crown, parting and temples and it's thinning all over. I'm so upset, I do have a wig but I just can't seem to get past the trauma of the hair loss at the moment 😨
Angie
Xxx

[Angywd]

Hi Sarah, thanks for your reply I was starting to get worried and I'm not up to going and getting my eyes checked right now.  

Sue F - think we are on the same chemo, I have 3 X FEC then straight into 3 X T.  I asked the nurse if I would still need to cold cap for the T chemo and she said yes.  Haven't read up if the side effects are worse on the T part, does anyone know?

hugs

Angie

xxx

[Sarah04]

Hi Angie

Just to let you know my vision has been affected after each chemo round. I did mention it to the nurses and they didn't seem overly worried so I'm presuming it's another thing to add to the list of side effects!
Sarah x

[swampy1901]

Hi Flopsy

I'm on Day 7 Round 2 of FEC-T and even though I'm being careful with my hair - it is suddenly shedding quite a bit. I've already had it cut quite short and it is very dry on the ends but it is looking a bit thin and ratty on the ends too and I'm only washing it at most maybe twice a week. The chemo seems to zapped the grease making cells too lol!! I've started using a sleep cap at night too because I felt like my hair was matting at the back even though it's short. 

Daft as it sounds it's bugging me more that I'm constantly picking off hairs off my shoulders and feel I need to hoover the carpet more - and I'm having to rely on hubby to do that as i had a left mx and reconstruction and have a PICC line in the other arm and they say not to do too much if any heavy stuff around the house. Feeling a right grump tonight!! 

[Skye]

Hi OldDawn63

Thanks for the quick reply - I think I'll go with your recommendation and have it clipped short, would that be like a skinhead?  Am booked in for tomorrow some time.  I know hubby is not looking forward to it, so I might just sneak away myself and get it done.  I really don't want him to go through it with me if it makes him feel bad.  He's been such a rock for me that if I can spare him anything, then I will.  

Will definitely invest in E45 Itch Relief cream - can you use that over the short hair as well or do you have to wait until all your hair falls out?  Can you recommend a brand of aqueous cream for me?

I'm at Day 7 but so don't want to develop itchy/sore scalp if I can help it.  

How did you get on with the second cycle?

Thanks so much for your help.  

Big hugs

Skye xx

[Sus12]

Hi Flopsy.
I was thinking that I might have to go straight into the T and continue the 3 x weekly cycle from the FEC :(. As I've been forewarned about the T it looks like Christmas this year might be a bit rubbish 😞 . My daughters are coming to us though so this year it might just have to be them and my hubby cooking and me chipping in from the sofa when necessary :D. They are all more than capable luckily for me :). I'm trying to look forwards to March when it will all be over and my life can get back to some semblance if 'normality' , whatever that might be by then!
My hair hasn't gone from the top or in patches it seems to be just shedding a bit all over but very lightly not in clumps. Still a decent covering but definitely more coming out now. Think I will try and do what you did and wait and see what happens and put it up as I'll feel better for doing that as long as I can but I'll feel better and more confident having my wig as well so I know I've got it when I need it. I'd love to try scarves but can't be bothered to mess with trying to tie them constantly or worrying that they will slip off at an inopportune moment! That would be mortifying 😞
Sue F xx

[Flopsy]

Hi Sus12,

Really sympathise about the hair. I did FEC-T and used the cold cap. My hairdresser said she saw a lot of women with a "monk look" who used the cold cap. She thought that when the cap went on there was an area at the top of the head which either had a air bubble or wasn't touching the scalp. This is where she was seeing most hair loss. 

I lost a lot of hair after my second FEC and that was the one where I had ice in side the cap and over my scalp when I took it off. My hair was long and matted so badly I had to cut some of the matted parts out. 

In the end I was lucky enough to keep a smattering of hair all around the sides of a decent length so I could put it up and hide the bald patches. I could also wear a half-wig attached to an Alice band as I had some hair at the front.

If I had an all-over snip then it would have been harder to do.

When I did FEC-T I went straight from the FEC to the T part in the next cycle. I had to change from a 3 weekly cycle to a 4 weekly one because the side effects were so bad.

Once I got to the T part the hair loss largely stopped apart from my eye lashes and brows.

It's now 9 weeks since I stopped FEC-T and hair is growing really well now.

[Sus12]

Me too Angie. Never had even short hair. Can't imagine coping with being bald at all despite what people and my hubby and family and friends say :(. Think if wig day is Weds I'll ask my 'My New Hair ' trained hairdresser what he thinks about the hair loss and whether I would be better having it clipped short if the wig is ready to fit. Then it will be fitted and I might walk out in it and see if anyone notices lol. Still have a reasonable amount of my fine hair though at the moment and no patches yet but the shedding is more noticeable when I gently brush it :(. Also starting to come out weirdly at the nape of my neck just on the left hand side where the shorter under hair is. Wonder why that is and whether it's to do with how the cold cap fitted on my head? Am only washing it every 3 days with Simple shampoo and conditioner and letting it dry as long as possible naturally in a towelling hair turban and then gently styling it on a fairly low heat if I'm going out anywhere. 2nd FEC this Thursday and I'm going to carry on the cold capping for this one then might re evaluate!
Don't want to think about the T bit yet but does anyone who has had it after the FEC x 3 know when they start it? Does it carry on immediately from the end of the FEC cycle? Only wondering as I will finish the FEC x 3 on the 22nd Dec and would like to think I might get Christmas done before they hit me with the 3xT!
Sue F x

[Angywd]

Hi all

im 48 and went onto HRT last year and had convinced myself that must be the reason.  But my oncologist tells me my tumour was growing for at least 2 years so that knocks that one on the head!  I guess we are just the unlucky ones ladies, good job we have each other on here 💞

I'm on round 2 of Fec and 3 days into it, has anyone else noticed problems with vision? First time round I just thought it was sore eyes but I am struggling to read text on the TV again today.  May also just be exhaustion as I'm not sleeping again but it's quite bad...  Hair still coming out, now I have to decide whether to continue with cold cap next time.....I just can't face the idea of being bald having always hidden behind my hair all of my life 😰

Sending out big hugs to you all, I sure need them at the moment!

Angie

xx