May chemo starters 2018

[Linda Corinne]

Not footballers but coldcappers.

[Linda Corinne]

Didn't have hair cut no but maybe I should have as it is highlighted and I find it hard to comb before I had any chemo. I have just had my second rec and should have washed it straight away I think. I have been told to get oil intensive conditioner by my hairdresser so will try that tomorrow. Or may resort to olive oil. I can't get on facebook footballers group as you have to request permission. Thanks.

[Meesh73]

Hi Linda, I'm from the October thread and Shi asked me to pop in and see if I can help re: cold cap. I cold capped through my fecx6 chemo and kept a fair amount of hair. Did you have your hair cut shorter prior to chemo? I had mine cut to a short inverted bob as I wasn't sure if I'd be able to stand the cold cap or if it'd work. I used to wash and comb mine only once a week and the rest of the time styled it with my fingers. How many cycles have you had? I found I lost quite a bit just after my 2nd cycle and unfortunately the hair seemed to get matted. You could try something like almond oil or olive oil as this would not have any parabens in it. I ended up losing most if the hair on the top of my head but the back, sides and fringe all stayed so it didn't look too bad. Feel free to pm me if you'd like with any cold cap questions.

Good luck ladies, hang on in there and look after each other! It'll soon be over and you'll be out the other side 😊

[Leanne17]

@linda. Ouch sounds painful hope you get it detangled as soon as.
@ hets yes feels really weird. I went straight to grade 0. Feels so cold all the time. Just been down the pub with the new wig on. No one could tell. 😁. Xx

[Hets67]

@leanne17 well done! Feels so weird doesn’t it! I went down to a number zero today (from no 2) - first time I’ve ever had a free haircut at Toni & Guy 😂. Also thanks re McMillan, I’m on the case! @Sarah I had a right side mastectomy with implant at the end feb with reincision end March to get clear margins. Will have follow up surgery with permanent implant and ‘boost’ to my rather depressed other boob once through chemo. Really hoping to get everything finished by Christmas!

[Linda Corinne]

Help. I have a big hard mass of hair on the top of my head which is after using the cold cap and not washing out the conditioner for 2 days. Tried Aussie detangling spray and now leaving in Palmers intensive conditioner for an hour or so with cling film over it as tried for around 20 mins or longer but only made it a bit softer at the front. My hairdresser recommended the oil leave in conditioner which is intensive so may try that next but wanted to not use anything else with paragons in it. Anyone got any suggestions? Ta.

[Tracey Mac]

Thanks Sarah, tongue feels much better and have more energy today despite the rain 🌧

Leanne you are so brave, well done for shaving your hair.
We will all get through this together 🤗🤗

[Leanne17]

I had my hair shaved today. Such a strange feeling. The white scalp looks funny 😁 thanks for kind words everyone xx
No the McMillan grant is not means tested your all entitled to it. I got £400. The benefit adviser in the chemo unit filled in all the forms for me all I had to do was sign it. It took just over 2 weeks for me to receive the cheque.

@ Linda. Yes had bilateral mastectomy and diep reconstruction in March. I’m 36 with 2 children. No history of bc in my family. Xx

[mustardandgrey]

Morning 🙂
Day 18 for me, just been for bloods before bout 2 on Monday.
@TraceyMac, my mouth ulcers cleared up a few days ago, I found they lasted a week or so and tge difflam mouthwash worked really well.
My dentist gave it to me on prescription.
My hair started shedding on day 11, but it's only really been an increase in loose strands when I brush and wash it. Yesterday morning it picked up the pace with shedding but this morning it seems to have slowed down.
No cold cap and I'm putting off the shave as right now it looks the same as notmal, just very slightly thinner overall.
Hope side effects are minimal for everyone,

Sarah x

[Linda Corinne]

Anyone had a burning throat? It was bad last night so rang for advice. Need to take tablets with food especially steroids. Also take mouthwash and go to doctors for a prescription for indigestion if need be rather than going to chemist as taking steroids so need a prescription.
I havnt washed the conditioner out yet as told to leave it 2 days so just got my Silke on which is dark blue. The conditioner is put on when you have the cold cap. The Silke will catch the hairs falling out. I have a big clump in my hair which may be loose hairs so cant wait to was it later to see what comes out.
Have people had their operations yet? How old are people and who has not got children like me as this may be a factor why we get breast cancer?

[Hets67]

@leanne, thinking of you, it’s not easy. Since I had my head shaved I have been learning to enjoy it (weirdly). Makeup seems key, and a tinted moisturiser should help with your paler scalp - that said I’m a redhead so there isn’t THAT much difference. I’m getting my wig tomorrow. Great news about the cheque, is it means tested?

[JemPD]

Sorry Leanne - hope you’re doing ok. Big hugs xx

[Leanne17]

Well my hair is just shredding so bad now. Hopefully getting it shaved later and getting the fringe on my wig trimmed. Looks a bit funny as my face is tanned and can see how white my scalp is. Got a bit emotional this morning but plodding on.
Got my McMillan grant cheque in the post today. Nice surprise. Xx

[Linda Corinne]

So had my 2nd treatment yesterday.got in and just wanted to sleep so went to bed and ate toast with marg.had my tablet at teatime and another for as and when needed both for nausea.slept on and off and had breakfast.
Persevered with cold cap. It gets better after 10 or 15 mins.just take paracetomol an hour before. Been told hair will just thin but not be noticeable so fingers crossed.
Am using a silk pillowcase to prevent hair loss and my Silke turban is arriving today which was recommended on previous chemo threads. Its all the rave to improve hair quality and prevent hair loss. Just google Silke and you will find it. Its quite expensive but worth trying.
Linda

[tanya]

Day 14 of first cycle and despite a few days of oral thrush that has now cleared up I'm doing ok. I do get very tired all of a sudden Now and again and have to sleep, but that may be due to the fact that every morning around 4am I'm in the wide awake club and can't get back to sleep. My hair has just started shredding a little but I had it shaved before my chemo and it's not that noticeable yet. Hope all you ladies are feeling well this morning we can all do this and fight the good fight ❤️❤️❤️

[Tracey Mac]

Good morning ladies,

Sounds like a mixture of side effects going on here, the advice and tips are so helpful.

@mustardandgrey.......cycle 2 almost starting? Where did that time go? I might try your yoghurt tip as I have woken some with sores on the tip of my tongue, my mouth felt 'different' yesterday and now i know why.

I am day 8 of 1st cycle, headaches still not gone but more manageable. I have also gone from 4 days constipation to having stomach cramps and a bit of diarrhoea but again nothing I can't cope with. I had days 5 and 6 of extreme tiredness and had to give in and rest.
I feel.like I am picking up again now and hoping for some energetic days to get some things achieved.

Well done @joandbasilthedog to get number 1 under your belt.

Hope Jem and tropic doing well.
Food advice, I would go with what I was advised, eat what you fancy when you fancy it, little and more frequently seems to help with the nausea and drink lots of fluids 🥛🥛🥛

[Joandbasilthedog]

So day 2 of 1st cycle over . ( docetaxel and carboplatin) .. thanks jem and sarah , socks were the answer than wearing shoes ! All went well ... off to bed .... just waiting for signs of anything to start sickness wise but all seems fine so far . Good luck Tropic for friday .. jox

[JemPD]

Hi Sarah thanks for your wisdom - gnocchi sounds v good. Nauseous has made eating anything a struggle today but have some more meds to try - hoping dinner may be good tonight. Know what you mean about tea and coffee. Xx

[mustardandgrey]

Hi, Tropic_al - and welcome!

I would recommend yoghurts - I'm just about to start my second cycle on Monday and have found that my main symptoms so far have been ulcers...still present but clearing up, thanks to Difflam mouthwash...and a really dry mouth.

I wouldn't worry too much about what you eat, the main thing is to eat enough as the nausea hits for the first few days.

And water - as much water as you can.

I struggled with fluids in the first few days for some reason, so little and often.

Gnocci was my go to food during the first week - and cornettos!

Funny how your taste changes, I went right off tea and coffee from the very beginning, but for the last 10 days or so my appetite - and taste - is back to normal.

Good luck for Friday.

Sarah xx

[Tropic_al]

Hi,

thanks for the message Jem. I'm going to have FEC-T with Herceptin starting a couple of cycles in as I'm HER2 also. Luckily I love ginger so have ginger sweets, drinks, fresh ginger, biscuits at the ready! Have a soft toothbrush but have stuck to normal toothpaste unless people really advise otherwise. Will aim to drink lots of fluids to flush the toxins out and will try to go for regular short walks when I feel up to it.

my main concern is food for meals as I love most things but not a big fish fan..might have to try to eat more of at. I eat quote a lot of meat so maybe I need to cut back and think of some good Vege ideas and stick to chicken mainly! Any tips on good recipes or snack meals from anyone that I can get in for when I don't feel like eating much appreciated. 

So so glad you're feeling ok today Jem..well done, keep going...you're inspiring me!

thanks

X

[JemPD]

Hi Tropic-al sorry that you have had to join us but a warm welcome.
Thinking of you in the run up to Friday. What is your regime? I’m 6x Feb-t. I had my first one yesterday, it was OK and pleased I didn’t loose the plot. I was very tired and a bit nauseous- meds helped. Today up, bathed, dressed and about to go out for short walk.
Any questions on what to buy/ take just ask and someone will answer quickly.
We’ll all get through this one day at a time
Take care Jem xx

[Tropic_al]

Hi all, 

Just joining this thread as about to start chemo on Friday...a great hot bank holiday weekend in store! Lovely to hear all of your positive posts and I'll be taking some tips in with me for this first unknown experience. Considering trying the horrible cold cap but will abandon if too much and embrace the baldness. Will then have to crack on and get my wig organised quickly. Daunted by the whole experience and very nervous but I know I can do it like you lovely ladies.

Thanks

Tropic_al

[Leanne17]

Yes will definitely think about it!!
Do u all know about the McMillan grant you can get. It’s up to £500 for anything you might need whilst going through treatment. The benefits adviser in the chemo unit told me about it and filled in all the forms. Worth looking into if u haven’t already. Xx

[Hets67]

@leanne17 we’re on exactly the same dates. Looking at my scalp which is already bald in patches I def did it just in time. Worth thinking about getting it done tomorrow if you can find someone nice with some clippers - luckily my friend had some so she came over

[Leanne17]

@hets. Well done you shaving your hair I am contemplating doing it as it just keeps coming out in clumps. I had my 1st chemo on Thursday 10th too. I wish we could post pics on here!! Xx

[Hets67]

Haven’t been on for a few days and a lot of amazing things to catch up on. I’m day 13 (I think that’s how you count it, Thursday Chemo’s). The last few days I’ve been feeling better each day, and enjoying the nice weather (in the shade!). My hair was long 2 weeks ago, cut to shoulder length before chemo, but last couple of days my hair has been shedding a lot so today my friend shaved it to a number 2 all round! Best decision I could have made because now I THINK it will be less traumatic when I go bald. Would def recommend it for those of you who are not cold capping (I tried but failed).

[Leanne17]

Well done jem for sticking with the cold cap. I couldn’t stick it.
As for my hair prepared myself for it so been ok. 😬. Xx

[JemPD]

Well done. Which course of chemo are you on tomorrow? Warm socks and lip balm were the only things I used. Thinking You tomorrow.

[Joandbasilthedog]

Thanks for the ideas ... day 1 on H and P went well back tomorrow for usual chemo so told to be more effects but tonight feeling very dandy ..... might just be the steriods. Having a think overnight about cold cap but i think not as advised not to by bc nurse due to migraines but also i was so so hot and lerthgic i just wanted to get out of there . But yes to the socks what a great idea !! Hope everyone doing ok xx

[JemPD]

Hi all
Thank you Spange for thinking of me.
Busy day here, first cycle of drugs ✅, hope all went well for you too joandbasilhitthedog. The cold cap was just as everyone on the forum said - vv hard for first 15 mins, fully understand why some of you didn’t continue. My Hubbie was amazing at distracting me. In a bizarre way cold cap stopped me stressing over the administration of drugs. Trying to eat the panini I ordered with cold cap **bleep** was hilarious- we all laughed.
Exhausted now and despite having anti sickness med feeling nauseous 😖. I’m back at hospital for injection tomorrow and think more drugs may be needed.
Leanne - hope you are ok re hair.

[melsy68]

You're doing amazing Leanne... And great that you're wig ready x

[Leanne17]

Wow my hair just started coming out in clumps!! 12 days after 1st chemo. Thank goodness I’ve got my wig ready hey?!?! 😏

[Leanne17]

Sending hugs and best wishes to you all. We got this ladies!!!
Got my 2nd cycle next Thursday 31st and hoping that I handle it as well as I have the 1st. Can’t beli how lucky I’ve been with hardly any bad side affects 🤞🤞 xx

[Leanne17]

I also seem to have a constant runny nose!! Strange!! Xx

[mustardandgrey]

Hello @Joandbasilthedog 🙂

Advice on what to take...well, I took a back packed for everything - book, drink, snack, babywipes etc, but all I ever used from the over stuffed bag was a pair of warm socks!

I'd definitely recommend the socks, so much more comfortable than shoes.

Sarah x

[Tracey Mac]

Welcome @joandbasilthedog, Hope your first treatment goes well. Let us know how you are doing 🤗

[Joandbasilthedog]

Hi hopefully i am in the right place . Starting chemo today . ( 6 cycles before op) . First over two days . Today is heceptin and perzamab . Advice what to take with me? 🙏🏻

[Tracey Mac]

Thanks ladies,

Loving all your support. It is hard to do nothing when we are used being on the go but I am definitely listening to advice today. We can do this 😎

[melsy68]

Morning all.. Wow we're all doing amazing.. It's so great logging in every morning for a confidence boost. I'm slightly behind you Sarah and I'm also not cold capping (hospital don't offer) but am finding the odd lose grey hair. I'm naturally Curly so I wonder if my new locks will be straight and grey!! @spange I also have a slight inflamed gum, just hoping it doesn't develop into anything too nasty.
Tracey I hope those headaches can be sorted for you, it must be draining.
I've got a constant runny left nostril! Not sure if it's a side effect, any one else got this?
I've booked my LGFB course for July so hoping they'll be able to work some magic on me as I'm sure I'll need it by then!
Melissa x

[Spange]

R&R day sounds like a v good plan, Tracey. Try not to give yourself ANY boxes to tick. Just be. Innocent drama quite good on ITV Hub btw xx

[Tracey Mac]

Morning all,

Love the update @spange, it helps to know we are all feeling as we should.

I am day 6 and the heaadache has not left me yet, doing all the right things and resorted to calling the helpline earlier to be told to contact my GP if still troublesome.

From yesterday I felt the fogginess, tiredness and weakness in legs, made myself go for a walk and just felt washed out and unable to concentrate all day.

Since finishing 3 days of dexamethosone I am sleeping better but I wake up feeling as tired as I did going to bed.

I am going to be kind to myself today and give myself permission to relax and rest, I am really hoping to feel well enough for a meeting at work I would love to attend tomorrow but......... day by day.........

Good luck to you all ladies, we are doing amazing, lets keep it up xx

[Spange]

Morning - soz have been out of the loop for a few days. Just adjusting. I’m ok. 4 days of steroids from weds through to Saturday resulted in my body (understandably) running out of steam on Sun/Mon. Energy was fun while it lasted though 🙂 Taste buds disappeared entirely on Saturday, but seem to be creeping back a bit now. 

Have also managed to give myself the injections - was v nervous about the first one, but it’s really not as difficult as I thought it would be. 

Side effects are def there, but doable, so far. Headaches, aches, fogginess, and tiredness mainly, but none too bad, so trying to be kind to myself and give my body what it needs. Have had an inflamed gum for a few days, so keeping mouth as clean as poss, and using a baby toothbrush. I’ve been spraying a little colloidal silver on the gum which seems to be helping too. My head’s quite itchy and pimply, and not using cold cap, so assuming that’s an early sign of what’s going to happen there (eek). Skin is quite sensitive. Been using Udderly Smooth morning and night on skin to keep it m***t, and can recommend the cream....it feels lovely to spread on 🙂 

But all of that is doable....and it is temporary. I’m having a few low moments, of course, but am keeping my head above the water and am in good spirits. I’ve challenged myself to clear a set of drawers out today that haven’t been cleared for years....foggy, tired head permitting....

@Tracey and @Ollie - how are you doing?

@Jem - good luck for today xxx let us know how it goes x

@Sarah - curly grey hair is what I’ll be expecting too lol. You’ll rock it 🙂 

[Gill3105]

Jem. You are amazing and as always huge hugs. And catch up later. Will be thinking of you.

[mustardandgrey]

@Linda - I'm on day 14 and for the past two days I've been losing odd strands of hair, a definite loosening!

Not lots and definitely not clumps, but if I run my hands through my hair I shed a few strands and have found a few single solitary strands randomly on my arms.

(I'm not using the cold cap)

As I work from home with a craft business I've become increasingly paranoid about sending items out with hairs on, so my new must have accessory has become a rather unfetching hairnet for packaging and sewing 🙂

I was expecting to get a few signs that my hair was going to  start shedding, but aside from an occassional crawling rather than itching sensation there's been no pain or tightness.

Alarmingly, the loosened hair folicles have confirmed what I already knew...the tips of my hair are pure white rather than the (bottled) chestnut brown I've been dying it for over a decade, so I'm expecting it to grow back grey and curly!

Sarah x

[Linda Corinne]

My hair started coming out on Saturday day 18 but am hoping as I used the cold cap I will keep a lot half of a quarter at least. Have pre assessment tomorrow and then 2nd cycle on Wednesday.

[JemPD]

Hi everyone just joining you as I found out today my chemo starts tomorrow. I have just read through all your posts and a huge thank you as it has really helped me calm my nerves, you are all amazing ladies.
To introduce myself I am 48 mum of 3 amazing children, with grade 2 multifocal idc. I was diagnosted mid Feb followed by WLE and SNB with just 1 sentinel node involved but no clear margin so has masectomy and LD Flap reconstruction on 13th April where the multifocal tumours were found. Met oncologist last week, PICC line and talk with nurses and consultant today and start tomorrow. FEC-T x 6.
Trying to be very positive as this is best for me. My children (11,10 and 7) are doing amazingly well through this roller coaster. As we knew chemo would start soon Hubbie and chn have made me a ‘Mum go to box’ to help with side effects. Reading your posts have helped me know this is doable.
I hope you are all doing well along this roller coaster we are on together..I’m bucked in for this new ride with the ‘big pants’ on!!

[OllieRev]

Had my first treatment on Friday, taxol & carboplatin, and used the cold cap which was hideous but stuck with it. Developed a headache halfway through rather than at start but as soon as cap was off it went. Slept a lot at the w/e, actually managed to inject myself Saturday & Sunday evenings, massive achievement for the squeamish needle-phobic woman I am! Just seem to be stuck with a foggy feeling around my eyes & head that I can’t shift. Hoping it doesn’t last the week as it’ll be Friday before I know it and starting another treatment. Hope everyone is doing ok, sending big hugs xx

[Hets67]

@melsy68 mine is just implant with some kind of clever mesh thing which creates a sort of internal cradle, and luckily my skin and nipple were conserved. It’s taken a while but 3 months in it looks great and feels fine. Anyone who sees it, including my GP, is amazed! It’s still slightly bigger and tighter than normal but it’s still a temporary implant with inflator and will be replaced with a slightly smaller one once I’m through chemo. So yeh, no solution is perfect but I’m as happy with it now as I could be in the circumstances

[melsy68]

@hets67.. So sorry only just seen your reply about reconstruction! I too was recommended to have diep plus an implant as I didn't have any where near enough fat for one! I was adamant I didn't want any implant so consequently I have a small new boob (b cup) instead of a dd which I used to be! I am very happy with my decision, even though it is Alot smaller, but when in a bra it looks fine! I am fully aware cosmetically had I gone with implant as well as fat the appearance would have been a whole lot better but I just wasn't comfortable taking that option! How does yours feel with tummy fat and implant? X

[Tracey Mac]

Thanks Sarah, unfortunately I have had this headache for 2 days now. It started with the cold cap but i think it's a combination of drugs as well. I tried a couple of doses of paracetamol yesterday but I have just taken over the counter co-codamol to see if that helps. Still not sleeping well and developed groin pain after the injection yesterday radiating down thighs, I would like It to early labour pains but bearable.
Otherwise feeling okay but only day 2 post FEC number 1

Hope you all enjoy a weekend of sun and Royal Wedding/FA Cup whichever is your preference 👰🏆