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April 2019 Chemo Starters πŸ’–

Member

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

Member

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 !!!! 

Member

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’–

Member

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 

Member

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 

Member

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

Member

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

Member

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

Member

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?

Shi Community Champion
Community Champion

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

Member

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 

Member

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!

Member

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

Member

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!

 

Member

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

Member

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’–

Member

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

Shi Community Champion
Community Champion

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

Member

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?

Member

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 

Member

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

Member

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

Member

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

 

Member

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

Member

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

Member

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

Shi Community Champion
Community Champion

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

Shi Community Champion
Community Champion

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

Member

Re: April 2019 Chemo Starters πŸ’–

Hello

How have you found the cold cap?

I start chemo this Thursday.

Mominette Smiley Happy

Member

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 . 

Member

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

Member

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

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

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

Member

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

Member

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

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Louise,

 

So sorry to hear bc has raised its ugly head again. But you're right, things are very different and so much more advanced from even 5 years ago. My bcn said that when she started she pretty much knew exactly what treatment would ge given but now theres so many different options. Yes there are still side effects of chemo but the pharmacist impressed on me that that there are drugs for every thing!

 

Mind you this is only my 2nd day after 1st chemo and I'm feeling a bit poorly so what do I know!!! 

 

Before I retired I was a librarian so like to think I'm organised. All my drugs are lined up, drug chart all noted up, thermometer and blood pressure machine at the ready, wee hats not needed yet ( thank goodness), scalp moisturiser holding down chart...........all gives me something to do I suppose!

 

Have a good Easter Monday.

Member

Re: April 2019 Chemo Starters πŸ’–

Hi I'm new to this site.  I've got breast cancer for the 2nd time.  1st time was 15 years ago.  A real shock to have it again.  Have had op 2 weeks ago and have been told I will be having chemo.  

 

Having read all the posts there seem to be so many different types of drugs etc.  Dont remember that from 1st time around.    Obviously a lot has changed over the years.  I thought I knew what to expect, but now I'm not so sure.

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi christine, I had chemo this time last year and through the long hot summer and was advised to wear factor 50 and stay out of the sun as much as possible. I used to sit in the garden but under the parasol. X

Member

Re: April 2019 Chemo Starters πŸ’–

Hi lindylou,

I was advised to take my steroids in the morning as they can stop you from sleeping. Although these are tablets not injections so might be different? Also, I’ve had trouble sleeping anyway even when I’m not taking the steroids. 

 

Hope people are managing to enjoy the sun. Does anyone know if we need to be careful in the sun during chemotherapy? Also has anyone been advised about what foods to avoid? I’ve not been told but read places that I shouldn’t have shellfish or uncooked fish like sushi or smoked salmon. Is this true? 

 

Happy easter

x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi 

Had my first chemo on Thursday, so far no major side effects. Take me first steroid injection today and noticed some of you have had problems after. Wondered if you had been advised to inject on a morning as I discussed with my chemo nurse and agreed after tea would be fine. Might be worthwhile checking if you can change to later in the day so any side effects you can sleep of and hopefully feel better through the day. Also was advised as soon as I feel nauseous to eat something which I have found works well for me. Reading through some blogs I also found others recommended sparkling water, elderflower cordial and both together, so have some waiting just in case.

 

Hope this helps

Member

Re: April 2019 Chemo Starters πŸ’–

Welcome Pollensa!

 

Glad it all went well. I think one thing you will find from this board is that we all experience our side effects in different ways! Hope yours aren't too bad. We are here when you want or need us :-)

Just also to say I don't do much physical activity beyond working with children! lol. We try to get out and about to walk a bit each day but that's it really. I haven't got into the habit since starting a new (all-consuming) job so don't feel bad. 

Happy Easter everyone.

Sharon 

Member

Re: April 2019 Chemo Starters πŸ’–

Shame you didn’t get to the run Sue but as I’m sure you know there will be others. You are wise to rest when you need to. I was told when going through chemo to make a note of how I felt each day because se’s tended to follow a pattern through every cycle, it was good to know what was coming and at what point I would feel ok. 

Well done to your friend, it is thanks to people like her that research has helped us! 

I hope you continue to feel better and enjoy the sunshine this Easter x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi michelle

I didnt make it to the easter bunny run today as i was still nauseous and tired from yesterday but ive felt a lot better today  managed to get out of my pj's and into the garden which was so nice to sit in the sun and relax.  Not sure if this is a pause in my side effects, after feeling rotten for 3 days, but it did surprise me to have side effects within the first 12 hours.  Anyway tomoro im off to watch my friend "brave the shave" - she has raised over Β£500 so far!! Hope u have a lovely easter weekend xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone,

 

Didn't want to intrude until I'd had my first chemo! It all went very smoothly and efficiently today. Appointment  was at 2 and out by 4.30pm. Just waiting for side effects to kick in now!  Getting hair shaved and wig fitted next Wednesday. Maybe a bit previous  but I want some control back.

 

Very jealous of anyone that can walk miles each day. I could well believe that will help both physically and mentally. Unfortunately I have arthritis and , as they say up here, can barely walk the length of myself! The local Maggie's do an easy yoga class so I might try that. You've all inspired me to attempt something physical and "outside my comfort zone" (most overused phrase EVER!) so thank you.

 

Have  a lovely Easter weekend and hope the sun shines on everyone....

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Cora

Just popped in from the Feb group and saw your question regarding PICC line covers. I've bought several on-line from Annabandana. They do them in 3 different sizes, sm, med and lge in a huge variety of colours and designs at £2.40 each. They also sell loads of headwear again all reasonably priced. For the warmer weather I'm thinking of buying matching covers and maybe set a new fashion trend☺. Good luck xx

PS Reading the posts in your group you seem to be giving and receiving the same support as in our Feb group. You can't beat it😊. If any of you want to ask any questions please pop in and ask. We're all happy to help. Enjoy the weekend. Happy Easter🐣🐀πŸ₯ 

 

 

 

 

  

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Hannah,

 

Thanks for messaging ! That is absolutely amazing - really does sound like a β€˜wonder drug’!

 

Best of luck and keep in touch!

 

Love,

Beth xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Beth!!

I am indeed on the same regime as you. It’s bloody good too! I’m just over 2 weeks having it, been to see my oncologist today, and she can already tell from my physical exam that my 5.5cm lump is smaller! 

P.s. nice to meet you too.

 

Hannah x

Member

Re: April 2019 Chemo Starters πŸ’–

Hello all,

 

Hoping I am posting in the correct place! I started chemo yesterday TCHP after HER positive diagnosis. bit woozy today after steroids but wondered if anyone else is on this regime? Sorry I haven’t had chance to scroll down everything!

 

Nice to β€˜meet’ you πŸ™‚

 

Many thanks and good luck!

 

Beth xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Oh good I’m pleased the nausea has passed and that you have meds for it. I seem to remember I had anti sickness from day one, it might be worth chatting through with your onc at your next pre chemo appt. Good for you doing the run or walk tomorrow, good luck and enjoy your chocolate treat! X