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April 2019 Chemo Starters πŸ’–

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Re: April 2019 Chemo Starters ?

Dear Posters   sorry so fuzzy brained, read through the posts but now can't recall who is doing what haha.  Wishing you a lovely day at the wedding.  I managed my grandson's first birthday for a cuddle and cake and that has been the highlight of my cycle - the rest is pretty rubbish.  I was taking my temp quite often in days 2 to 15 - kept almost hitting 37.5 , so felt strong need to check , now down to 36.8 so more confident all is ok.  worst for me is the chemo brain, feeling stronger physically but mentally feeling fragile and having great trouble concentrating.  Drove car this a/.m (supervised)  did grocery shopping, and now feel generally frazzled.  Next week its blood test Monday, pre chemo clinic /tues then here we go again on Thurs.  Had hoped for more good days and finding it daunting that cycle 2 is just round the corner.  

Has anyone else got a sore rash?  Back of my hand, red, bruised and itchy.  I so want to think about something else than side effects.  Sorry peeps feeling just a tinsy but sorry for myself .   Any way happy wedding tomorrow Debi    

Alice

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Re: April 2019 Chemo Starters ?

Still waiting for my chemo start date, so am reading all your posts with interest. Notice some of you take steroids, and some of you are having sleep related side effects fue to that.  Would be interested to hear more please.  Thank you.  Louise

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Re: April 2019 Chemo Starters ?

Hannahlizzy and Debi,

 

Please don't copy me, im just a bit OTT with it all! Mind you, only taken temp once today......

 

Debi, have a lovely time at the weddding. 

 

Hannah, so sorry youre feeling rotten. Stay horizontal until you feel better!

 

Pollensa

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Re: April 2019 Chemo Starters ?

Gosh I rarely take my temperature at all! Not unless I’m feeling warm anyway... I’d say all in all since starting chemo I’ve taken my temp around 5 times. Maybe I should be doing it more! 

You will have a lovely time at your niece’s wedding tomorrow I’m sure. Hopefully the weather is nice. Just think, once you’re done with 2nd chemo, you will either be a third or half way there, depending on how many cycles of chemo you are having! 

I’m having a bad day today. Got a feeling of constant nausea, and can’t stand up for very long without feeling sick/ light headed. Will just continue to monitor this, as I did only have my 2nd chemo 4 days ago, and I’ve stopped steroids now. So I think I’m on a come down!

 

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Re: April 2019 Chemo Starters ?

Good for you Hannahlizzy21, i think i would have been too zonked to go, so good on youπŸ‘.

 

Pollensa - i only take my temp once a day -  should i be doing it more often?

 

Tomorrow my niece gets married, we are staying over at the hotel so i am looking forward to that, then its back to blood tests Monday and 2nd lot of chemo Tuesday.

 

DebiπŸ’–

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Re: April 2019 Chemo Starters ?

So completely understand! Last thing you want is to end up in hospital with a nasty infection.!

 

Mind you, I really must stop taking my temp. every hour on the hour.......!!!!! Then again, it is quite reassuring....😊

 

My side effect of the day is spots. Haven't had that since I was 15. Thank goodness for makeup!

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Re: April 2019 Chemo Starters ?

I completely get it Debi!

I had my 2nd cycle on Monday, and my parents had bought me tickets before my diagnosis for Dirty Dancing the Musical on Tuesday. I went to the show (pretty spaced out), but I took surgical masks with me for when it was on. There is no way I would’ve allowed myself to breathe the same air as all those people without protection haha. Touch wood- so far, so good. No infections or anything, and although I got strange looks by some people, I just thought β€˜well I’m saving myself here’, and my mum and nana who came with me were very encouraging of me wearing them! 

Its too risky!

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Re: April 2019 Chemo Starters ?

Good morning everyone.  I hope you are all coping with any side effects.  Here in Yorkshire the sun is out.  I am just on my way to see my consultant before i start my 2nd cycle on Tuesday.  Anyone else having treatment next week? 

Does anyone worry constantly about infection?  I never used to notice how many people sneeze and cough around and about but now i am paranoid and find myself holding my breath or turning around and steering clear of them!

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Re: April 2019 Chemo Starters ?

I have just spoken to my breastcare nurse and she referred me there and then to the wig lady and my appointment is 16th May.  They haven't mentioned a charge, i will update when i have had my appointment. 

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Re: April 2019 Chemo Starters ?

Your Macmillan’s usually have a good range of preloaded wigs and you can have one for a donation of money, also luvyababes has an excellent range of wigs now and I was happier in my Β£14.99 one from there than my vet experience real hair one my darling hubby purchased for me during chemo. Your usual hairdressers can style the wigs for you too if they need a bit of extra shape, hope this helps πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: April 2019 Chemo Starters ?

Saw a post from Scotland, it is only in England that there is a prescription charge of Β£72.80 for wigs, everywhere else in the UK is free, as the devolved government's have agreed to fund them.

 

The medical exemption for drugs doesn't over wigs in England, but its always worth checking as some benefits entitle you to a different exemption when income is lowered. 

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Re: April 2019 Chemo Starters ?

Every CCG (they commission local health services) has a different criteria, and not all allow top-ups. Where I live the limit is Β£120, which gives a very limited range especially if you have long hair like me and we aren't allowed to top up. 

 

Some NHS hairdressers also charge an extra fee if you need the wig cutting to a different length.

 

I've cold capped, but I am getting general hair loss, which increases daily (day 20 of first cycle). There's no visible difference yet, but even if it generally thins it'll look odd so I'm getting a wig anyway to wear on top. 

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Re: April 2019 Chemo Starters ?



@Christine18 wrote:

Hi,

I’m  cold capping too so have looked at wigs but outside of the NHS and the one I found was Β£1,800 😳😳 Can I ask, are the ones through the NHS good? Human hair or synthetic. I am thinking of getting one on standby just in case but don’t want to pay that much money if I’m not going to need it. Don’t really want to pay that much money even if I do need it! Can you get human hair ones through the NHS? 

Sorry for all the questions. I had my third weekly chemo session yesterday and been told this is the week to expect hair loss so I’m a bit nervous to look in the mirror this morning. I start cycle 2 next Wednesday. 

Christine x


@Christine18 wrote:

Hi,

I’m  cold capping too so have looked at wigs but outside of the NHS and the one I found was Β£1,800 😳😳 Can I ask, are the ones through the NHS good? Human hair or synthetic. I am thinking of getting one on standby just in case but don’t want to pay that much money if I’m not going to need it. Don’t really want to pay that much money even if I do need it! Can you get human hair ones through the NHS? 

Sorry for all the questions. I had my third weekly chemo session yesterday and been told this is the week to expect hair loss so I’m a bit nervous to look in the mirror this morning. I start cycle 2 next Wednesday. 

Christine x


Don't even think about spending that kind of money ! Initially I thought yes real hair it has to be but was horrified at the cost . The synthetic ones are fine the NHS wig specialist trimmed and styled it . Just hoping I do not have to use it I am five weeks in 

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Re: April 2019 Chemo Starters ?

My BCN actually steered me away from the real hair wigs due to the huge upkeep of them and the synthetic ones are so realistic nowadays. I would go and see them both and see what you prefer. 

 

I've just been going with hats just now haven't had my appointment for wig yet and wasn't sold on the idea but I'm going to give it a go see if I like them on. 

 

X

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Re: April 2019 Chemo Starters ?

Hi,

I’m  cold capping too so have looked at wigs but outside of the NHS and the one I found was Β£1,800 😳😳 Can I ask, are the ones through the NHS good? Human hair or synthetic. I am thinking of getting one on standby just in case but don’t want to pay that much money if I’m not going to need it. Don’t really want to pay that much money even if I do need it! Can you get human hair ones through the NHS? 

Sorry for all the questions. I had my third weekly chemo session yesterday and been told this is the week to expect hair loss so I’m a bit nervous to look in the mirror this morning. I start cycle 2 next Wednesday. 

Christine x

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Re: April 2019 Chemo Starters ?


@Debi2 wrote:

Hi

 

I am in Wakefield and i am cold capping.  The chemo nurse said that because i am cold capping they can't refer me for a wig!  I am currently on day 16 today and still haven't lost any hair although my scalp does feel a bit sore - a bit like sunburn sore.  I am going to ring my breast care nurse and ask her about the wig situation because even with cold capping its not guaranteed to stay the same and may still drop or thin out (my hair is thin to start with).  I had been and looked at wigs and the one i saw was going to be Β£138. 

 

Is anyone going for chemo Tues 30th? 

 

πŸ’–


Hi that sounds pretty out of order . I am being treated at The Christie in Manchester and cold capping but my oncologist gave me a wig voucher too after signing me up for CC . I got mine two weeks ago as a standby thankfully not had to use it but it is there should I need it . I thought the wig voucher was standard for chemo patients . Challlenge !!!! 

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Re: April 2019 Chemo Starters ?

Hi

 

I am in Wakefield and i am cold capping.  The chemo nurse said that because i am cold capping they can't refer me for a wig!  I am currently on day 16 today and still haven't lost any hair although my scalp does feel a bit sore - a bit like sunburn sore.  I am going to ring my breast care nurse and ask her about the wig situation because even with cold capping its not guaranteed to stay the same and may still drop or thin out (my hair is thin to start with).  I had been and looked at wigs and the one i saw was going to be Β£138. 

 

Is anyone going for chemo Tues 30th? 

 

πŸ’–

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Re: April 2019 Chemo Starters ?


@Mandyr44 wrote:

Hi,

im in Bolton and I received a letter from the hospital stating I was entitled to a wig and a list of salons I could go too. When I went to one on the list I was told the voucher was worth Β£110 towards a wig. There were some within that price range but the one I chose was just over Β£200 so I paid the difference. I’m hoping I won’t need it as I’m cold capping but only had one session so far so I should know this weekend if it’s worked. The hospital said between 18-20 days although I’ve seen posts on here where people have lost hair at 15 days. I’m Day 15 today so I’m just waiting to see what happens. 

take care, 

Mandy xx


Good luck  ! I have third FEC in a week and still have most of my hair after 34 days . The top of scalp is thicker new hair and the rest has thinned with some shedding but am hopeful too I won't need the wig 

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Re: April 2019 Chemo Starters ?

Hi there,

 

The hairdresser who is organising my wig said she would not shave but cut with comb and scissors. I was given an NHS grant fro Β£120 so I had to top up for my wig. But it's totally worth it. I just need to get some cotton beanies to wear under it. I've been told that's a must-have.

HTH.

Sharon 

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Re: April 2019 Chemo Starters ?

Hi,

im in Bolton and I received a letter from the hospital stating I was entitled to a wig and a list of salons I could go too. When I went to one on the list I was told the voucher was worth Β£110 towards a wig. There were some within that price range but the one I chose was just over Β£200 so I paid the difference. I’m hoping I won’t need it as I’m cold capping but only had one session so far so I should know this weekend if it’s worked. The hospital said between 18-20 days although I’ve seen posts on here where people have lost hair at 15 days. I’m Day 15 today so I’m just waiting to see what happens. 

take care, 

Mandy xx

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Re: April 2019 Chemo Starters ?

Hi Louise,

 

I'm in Scotland and going by the catalogue I chose from, my wig would have cost almost  Β£200. All I paid was for cutting and styling. I had an hours consult a few weeks ago and then another hour today. 

 

It's probably the same nationwide. Hope so anyway!

 

It a a good wig, just not quite used to it yet!

 

P

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Re: April 2019 Chemo Starters ?

Hi Pollensa

 

I havent got to the wig stage yet.  I had been wondering what the cost would be.  So it will be interesting to see what replies you get

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Re: April 2019 Chemo Starters ?

My wee head was shaved this morning! However the hairdresser who is authorised by the nhs left a tuft of hair all over. This falls out eventually anyway. I would have been scared to do it myself.

 

Although my wig looks great there is no doubt it feels "alien" at the moment. But at least all the white roots have gone........wasnt going to have colour put on and waste all that money when it was all coming off anyway!

 

Am I right in thinking theres a large variation between what the different national NHS authorities will fork out for wigs?

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Re: April 2019 Chemo Starters πŸ’–

Hi interesting tim s, please check with your unit about shaving/waxing. I was advised not to because of risk of infection. Also post op as I’d had op before chemo advised to use a ladyshave post op to minimise Lymphodeama risks too, but please check with your unit and follow their instructions. πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone,

 

Glad you all got your coughs and BP sorted! So I have a question. Has anyone been told not to shave, wax etc? My hair is starting to thin and was thinking of getting it shaved off. However, I went to a Feel Good Look Better course and one of the ladies on it with me was told no shaving, waxing etc. Can I shave my head or not?...

TIA

Sharon 

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Re: April 2019 Chemo Starters πŸ’–

I went to the GP yesterday regarding my cough, and the GP was very thorough. My chest is clear/ temp was fine/ obs and stats were normal and inside my throat was fine.

She has put it down to the change in weather as I suffer from hay fever, so I’m happy about that.

I just worry at times and think β€˜if I tell them something bad, will they stop my treatment?’ But then I also think β€˜if I don’t tell them something bad, could something worse happen to me?’

Its a strange one to be a part of isn’t it!

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Re: April 2019 Chemo Starters πŸ’–

Hi Everyone   re  cough   

Day 13 cycle 1 for me,  coughed a dry sort of cough days 10, 11 and 12, today its gone, hurrah .  Don't know if this is another side effect or just me.   glad to be feeling more like me, more energy and losing that nothing tastes right.  Still can't stomach coffee but heyho can manage that.   Elsewhere someone else mentioned a bad cough,   are you better?    Not looking forward to cycle 2 but it;s got to be done to bust the little b.....s

Chins up one and all    Al 

 

HER2+   Herceptin  Pertuzumab   Docetaxol

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Re: April 2019 Chemo Starters πŸ’–

We're all bound to have concerns about something or other. For most of us this is the Big Unknown.

 

I had issues with my blood pressure and phoned the helpline this morning. They were marvellous, so thourough and reassuring. Within 10 minutes of speaking to them my own unit phoned me back and completely set my mind at rest. Told exactly what to do and so kind and upbeat.

 

It's another aspect of care which I didn't expect but am so grateful for.

 

Not so warm today.......maybe get a better sleep tonight!

 

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Re: April 2019 Chemo Starters πŸ’–

I’ve had aches too Debi! But after looking at the side effects of TCHP, I can see that with my regime, aches and pains are very normal. I agree though, I always think something is going wrong when I feel a new ache or pain.

 

I had my 2nd lot of chemo yesterday, and started with a cough this morning! Going to see GP later, just worry with it being my chest just to check everything is still ok. 

 

Hope everyone has a nice day x

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Re: April 2019 Chemo Starters πŸ’–

Hi Everyone

 

I am now on day 14 or cycle 1 and feeling ok.  No hair loss yet (cold capping).  Under my arm feels sore/achy so i am going to give the BC nurse a call today.  Every ache and pain i get i think something's going wrong.  

 

Zoe - I was the same, so tired and sickly up  to around day 6 but after that it did improve.  Like the others say try and drink plenty and if you are still feeling sick call the nurses - they are there to help and are really good.  Fresh air does help to give you a boost even if its only a walk around the garden at first.

 

Wishing everyone the best, you are all inspiring ladies. Love Debi πŸ’–

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Re: April 2019 Chemo Starters πŸ’–

Hi Zoe, like Shi says, do keep calling your Helpline. I was very sick day 2/3 too, its horrible! The nurses were great and kept ringing me to check progress. I was taking three different anti sick pills, all at once, and it worked. They had me in on day 3 for a check over and I felt drained and slept a lot, then much better. I know you have your girls to care for but try to rest up while you need to and then, as others are saying - once you can, get some air and walk a bit, it really helps. It will get better, honestly! Love Mo x

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Re: April 2019 Chemo Starters πŸ’–

Zoe twin mum, please let your team know as soon as possible if your antisickness meds’ not working, they will try you on various ones till they get right combination for you, you don’t need to try and battle through, it can be fixed, also some girls from my oct17 thread used the seasick bands and found those helped. Yes water intake is important and try and grab naps when you can, you are a brilliant mum and your here and doing all you can to πŸ₯ŠπŸ₯ŠπŸ₯Šthis πŸ’© into oblivion πŸ₯ŠπŸ₯ŠπŸ₯Šuse the someone like me option on the bccf if you need bit of extra πŸ‘­πŸ‘­I put a postit up in my kitchen and ticked each one off and every time I saw the bell in the unit I told it, i’ll Be ringing you soon πŸ‘and you’ll be doing it to your bell in your unit too πŸ’ͺπŸ’ͺπŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: April 2019 Chemo Starters πŸ’–

After much deliberation with myself decided not to have cold cap, might have decided wrongly but too late now and not the end of the world! Hair comes off on wednesday and wig goes on.....

 

I have mobility issues and can't walk too well but managed to go for a short car run this afternoon and felt much better. I think getting into the fresh air makes a difference. Quite tired now. I'm thinking maybe a wee nap during the day might help. Any thoughts?

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Re: April 2019 Chemo Starters πŸ’–

stick with it ! Day 32 two FEC and still got pretty full head of hair ... the first 10 minutes are vile but once through pain barrier doable 

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Re: April 2019 Chemo Starters πŸ’–

Hi Mominette   i found cold cap ok.  weird to start with but doable.  I had a reaction to docetaxol tho and only completed about half the treatment, so cold cap came off early, not sure if i'll manage to keep my hair only time will tell.  Day 12 of cycle 1 for me-   nasal drip has stopped, burps and wind have eased so feeling much better today, a bit more human.

Herceptin/pertuzumab / docetaxol  HER2+.   Feeling yeah i can do it.  We all can!!!!   

Al

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Re: April 2019 Chemo Starters πŸ’–

I have had to really force myself some days but when I go out and get some fresh air I always feel so much better x

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Re: April 2019 Chemo Starters πŸ’–

Thank you. I only wish I could find the energy to go for a walk. I find it hard enough to hold my head up off the pillow.

 

Think I may need to have a chat with myself x

 

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Re: April 2019 Chemo Starters πŸ’–

Hi Zoe just popped in from Feb thread.  I have now had 3 FECs and it is horrible but doable.  Just make sure you drink loads of water and do lots of walking.  It flushes the toxins out of your system.  I suffered terribly with nausea so I know how you feel but you can do it xx

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Re: April 2019 Chemo Starters πŸ’–

Day 5 on first round of FEC.....

 

Well I can honestly say the fatigue is far worse than I imagined. The sickness came within a couple of hours of being home. Starting to think I cannot do this and I'm not strong enough. I cannot even be a decent mum to my 7year old twins. Everyone keeps saying things will improve daily but its hard to keep a smiley face.

 

Zoe x

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Re: April 2019 Chemo Starters πŸ’–

I’m currently sat with one on my head! The first 10-15 mins are a little painful but not unbearable. X

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Re: April 2019 Chemo Starters πŸ’–

Pollensa you made me 😁sound like I was treated it like a military manoeuvre, the full schebang ready to πŸ₯ŠπŸ₯ŠπŸ₯ŠπŸ₯Šit for six πŸ‘made it easier to keep track as the chemo brain took hold πŸ™„πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: April 2019 Chemo Starters πŸ’–

❀️❀️glad you’ve found braving the shave liberating ❀️❀️it’s stange how it makes you feel like you’ve taken a bit of control back isn’t it, emotional and think we all have a 😒as we do it, but it is empowering πŸ‘πŸ‘ladies coldcapping, the ladies who coldcapped on my thread only washed their hair once a week, if you start getting flaky bonce then let your team have a look, they’ll prescribe you something, one of the ladies had her chemo delayed till it cleared up as they can’t risk infection. πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: April 2019 Chemo Starters πŸ’–

Hello

How have you found the cold cap?

I start chemo this Thursday.

Mominette πŸ™‚

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Re: April 2019 Chemo Starters πŸ’–


@Hannahlizzy21 wrote:

I’ve had some hair loss but not much at all. Currently on way to chemo number 2, and I will definitely be cold capping again πŸ₯Ά. But even if it falls out, it’s not the be all and end all x



Totally and though am thrilled to have got past chemo  2 and counting with most of hair still there it has thinned and by the end I expect what is left will look pretty rubbish but at least cold cap also means hair will grow back quicker and avoids the trauma of total hair loss . 

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Re: April 2019 Chemo Starters πŸ’–

I’ve had some hair loss but not much at all. Currently on way to chemo number 2, and I will definitely be cold capping again πŸ₯Ά. But even if it falls out, it’s not the be all and end all x

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Re: April 2019 Chemo Starters πŸ’–

Hi Louise, 

 

Glad to hear from you. No, not really sickness. The multitude of anti sickness tablets they give you has helped me in that regard. No, I felt a bit shaky and just weird. My blood pressure was quite low but that's come up as the day has gone on. At the moment I'm just so hot. Windows open , fan blasting out and summer duvet . My English teacher always said, horses sweat, men perspire and ladies glow. Well, im glowin' like a horse!

 

Susan aka pollensa

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Re: April 2019 Chemo Starters πŸ’–

Braved the shave today, day 20 cycle 1 and feel so much better xx

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Re: April 2019 Chemo Starters πŸ’–

Hiya

my hair loss started on day 15. I am day 19 now and have shaved it off, as it was just falling out when touched. It had got really patchy. I feel much better now it’s shaved, but was emotional when it started to come out.

x

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Re: April 2019 Chemo Starters πŸ’–

Hi Pollensa

 

Sorry to hear you are feeling poorly - please do you mind me asking in what way.  Is it sickness?  I had that a lor last time.

 

You sound so organised,  I think I will try ti be toi - it will help me keep everything in order.

 

Hope you start to feel better very soon

Louise

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Re: April 2019 Chemo Starters πŸ’–

Hi Christine,

 

The MacMillan demystifying course I went on said not to eat a range of things including soft cheese and shellfish. There were loads of dos and don'ts. However, my oncologist said the only one to stick to closely is no shellfish. 

hth.

How is everybody doing with hair loss? I'm still waiting for it to start... day 15 tomorrow. Watch this space! 

Sharon