August 2018 Chemo starters

[Jude1962]

Unfortunately the drugs don’t work 🎶
Had very bad heartburn in the night & several bouts of sickness!
Jude x

[Millsy]

Hi ladies they called about pic line yesterday and I have delayed it till I need it and I can change my mind if I want so I will see how it goes, thanks for all your advice it really helps 😊 admire the lady who has worked right through I’m on day 6 of chemo and just started to come to life a bit it’s really taken it out of me.  Looks like a nice day today might venture out, have a good day everyone.

[Kip]

Hi Augusters..  been to gp today and gave meds for oral thrush so hopefully will see some improvement soon.  The best bit of advice i had on here is do not suffer in silence!  If you have hard SEs then callcall hot or nurse as they have all sorts of meds to try.  Push if you have too this is hard enough without pajn and sickness!  Big hugs .kip xx 

[Jude1962]

Hi ladies - hope you are all coping ok

Millsy, multitasker & cat67 - I had similar side effects to you, my breast care nurse contacted the chemo unit & for my 2nd chemo today, they have changed my anti sickness & steroids meds + got a tablet for heartburn & a mouthwash so hopefully I won’t feel as bad - update to follow😂
The company I work for have been great, I’ve got a sick note for the duration of my chemo but can do odd bits from home as & when I feel ok
Hope you start to pick up soon

Jude x

[Georgie Gee]

Hi all, 

and Multitasker, yes I have picc going in tomorrow.   Not looking forward to it but am told they numb the arm.  Will be having next chemo on Thursday - like everyone I am wondering what this will be like compared to last time.   Like others, I have not found that the oncologist is very empathetic or even shocked or 'sorry to hear....' about the treatment side effects.  Today I asked her whether she knew about the hospital stay for sepsis, and she said 'of course, but that's quite rare but like the other side effects, is one of those things.....'.    Not impressed. 

I pointed out that I have lost weight since last time, and she said that she might slightly reduce the dose because of this.  

Sometimes I wish they could see us during treatment - or even feel the side effects for half a day - but we must press on mustn't we..... 

love to all and and best wishes for fellow chemo-ers this week. 

❤️❤️❤️  G G 

[Multitasker]

Hi Ladies

Sending all my love and best wishes to everyone having chemo this week.

So glad to hear you are feeling a bit better this week Georgie Gee. Do you have your Picc fitted this week too?

Second EC on Friday for me. Really not looking forward to it after how hideously ill I felt overnight last time I had it. Saw omcologist and have to say he wasnt very empathetic. He said first one sometimes bad bc its the first time for the body and subsequent are better?? - I’ve not heard that from anyone else but bow to his judgement. Hope the nurses might have some suggestions. 

The weather looks like it will be a lot cooler than last time so will be curious to see how that affects the nausea in the days after. Hopefully in a good way 👍🏻

Good luck ladies 💋💋💋

[ktk]

Hi Millsy, I’m from June thread, so half way through. I have a Picc line and find it no bother at all. I have a Limbo cover for the shower/bath, which keeps it completely dry. I have lovely well fitting covers from Etsy which people think I am wearing as a fashion statement. I live in a rural area so my flush and bloods are done by community nurses at home. I think the benefits outweigh the negatives, for me anyway. Hope that helps. Kx

[Cat67]

Hi Millsy,

I have a PICC line too, my first chemo was 11th August so not had it very long but so far so good. It is a bit of a pain keeping it dry during showers and baths but I'm already used to it. And no pain at all. I'm sure I will be glad to have it removed when my chemo finishes after 18 weeks but I think it's worth it.

Good luck!

X

[JacqB]

Good morning Millsy
With regard to the PICC, I’ve found it to be a bit of a double edged sword. On the one hand, every time I need chemo, antibiotics, blood tests etc. I’m so thankful that I have it. I’ve watched others struggle with needles and feel so grateful to have a PICC. The major downside for me is the need for weekly flush and dressing change. It means that I cannot avoid the hospital on my good weeks. Also finding well fitting pretty covers has been a pain. I tend to wear long sleeves to hide it. I do miss a long soak in the bath but that’s a treat I’m looking forward to when this is all over, along with a swim. If I was given the choice knowing what I do now, I would have the PICC. 😊
all the best
Jacq x

[SallyG63]

Morning Mills (from the June thread). My first 4 cycles were EC and so far I've worked all the way through (commuting to Waterloo East daily) albeit on slightly shorter days do I can get s seat on the train. I had 2 days off with a blood clot and Fridays are chemo days but apart from that working has been fine.

[Millsy]

Morning ladies I am now day on day 5 of 1st EC chemo, side effects are fatigue, acid indigestion and feeling nauseous, all of them manageable just have to listen to body and rest when it’s telling you to, I managed the pictures last night with the family and fell asleep through the first hour but at least I was there with them.  Waking up at 4-5am and manage to do a few jobs in the kitchen which makes me feel better.  I am due to have a pic line inserted before next chemo but am dreading it as don’t want to have anything attached to me until I really need it, one of my pleasures is having a bath in the evening and don’t want to have the bother or keeping my arm out etc, I was going to discuss with my BCN but wondered if any of you had any thoughts or experiences with this?  Also hoping to work from home as I do a clinical job and not good as my immunity won’t be so good just waiting to hear if I can as do. Not want to stop work altogether on this journey as enjoy it, I know I will have down days where I cannot do as much but hope there will be good days too, any advice on working would be helpful too, I work for oxleas nhs foundation trust just been transferred over so all quite new to me.  Wishing you all a good day and SE’s are kind to you x

[Cat67]

Hello lovely ladies,

Have just been catching up on the thread as it's been a while since I posted. You have all been through a lot and are doing amazingly well! Loving the blogs too.

I had my first chemo session (FEC) on 11th August and had a grim 8 days of mega nausea and headaches (a couple of hospital visits for intravenous anti sickness and a change of meds). BUT, I'm out the other side and starting to feel more human again (apart from the mouth ulcers, tummy problems.....but they are a walk in the park in comparison! )

It's great to read your updates and know that we are walking this path together, slightly different routes but destination the same 

Keep smiling lovely ladies

Xxx

[Georgie Gee]

Aww Paulus, 

and every one of you who have been at my side through last week, Thank You! 

I am thankfully feeling better now since coming out of hospital. 

Have my 2nd FEC on Thursday, and am not looking forward to it one bit, but having had a good week now and remembering this, is a bit more encouraging that there is some light at the end of the tunnel.  

Kip, I am sorry you have these horrible aches and sore mouth etc.  Have been watching you quite carefully to see how T is treating you.... seems so hard that when we go through these SE's, we know we will have to do it 3 or 4 times!.....  I really hope you get the help you need from your team tomorrow. 

Georgie xx

[Paulus]

Georgie Gee,
I have been thinking about you, as your post on 13 Aug, and your sadness, stayed in my mind. Hoping you are feeling a bit better in yourself, and in spirit. I am not on chemo, and I hope you are doing okay x

[Kip]

Well done another step forwards or

[Jude1962]

Hi Ladies

Hope you are all ok today

Thanks for all the positive comments on my blog, I do feel it very therapeutic writing it & my friends find it useful as they understand it a lot more

I did brave the shave & feel a lot better for it, now I’m not losing swathes of hair at a time. My head is a little pink & sore but feels better.

The wig looks lovely & makes me feel like me again & does not move at all. The bandana / headwear look ok but people do look at you as if you are ill & thats still with eyebrows & lashes

So deep breathes for 2nd lot of chemo on Monday - we’ve got this ladies

Jude x

[Kip]

Yes people keep telling me my wignlooks so good and suits me more than my old hair and makes me look younger

[SB1610]

Thanks for the feedback Kip

I've already got some of the bamboo wig liners as I'd come across them when doing research. The wig I have is almost a perfect colour match to my hair and is in a very similar style and those that have seen photos of me wearing it couldn't tell it was a wig so I guess that gives me some comfort.

Thanks, Sue x

[Sunflower18]

I’ve got round 2 of FEC on Monday- all being well with the bloods. I haven’t heard anything so presume I am good to go.

Hair still, with me but a lot thinner but I ventured into work this week and wore the wig - wanted to get used to it before I lost all my hair. I thought I would try it out whilst I still felt confident and in control. It was therefore  up to decide when the wig came out rather than the treatment deciding when I had to wear it!

I was pleased- a number of people who didn’t know my diagnosis commented on my new hair style and it now feel comfortable to wear.

Good luck all x

[Kip]

Dear SB1610, I am from the June chemo starters, and just had No 4 chemo.   My hair started shedding at day 12 of first FEC cycle and then rapidly ramped up the shedding until day 15 when it was just floating around me all the time, that was the most distressing part I think.  I got it shaved off that day, about Grade 1 I think, that was tough I won't lie, took me a few days to get my head around it, and to be honest will be glad to see some hair again but, once it was gone the tingling, painful head stopped and was so easy to look after.  Have to say some hair coming back by last FEC too!   Not much mind, but its a start.  I have a lovely wig, I do find it a bit hot when the weather is and it did take a while to get used to, to start off I found it felt like wearing a hat in doors but after a while, and definately once all hair gone its so much better.  They fit so well these days my never slips or moves and nobody has ever realised its a wig.  Even the chemo nurse forwarned me that my hair might come out on the T part of my cycle and was so suprised when i whipped my wig of to show her it had lone gone!   Another tip, I have a bamboo wig liner, its small but so soft and makes the wig much more comfortable, I got mine at the wig shop.  What you will find is you get so used to having no hair you may not find you want to wear the wig much, nices hats are good to, but around the house I don't bother with anything, haven't braved outside yet completely bald, but lots of ladies do and feel very happy with it, after all we having to deal with its up to the others out there to not stare!!  You'll get through it, and once the hair is gone thats one less thing to deal with, you quickly cope with it.  If you go onto the June chemo starters thread you can see some photos of us rocking our baldies.. .I suggest you post too, its very therapeutic...oh and of course you can see me on my profile picture here!   Big hugs to you, be strong, xx Kip

[SB1610]

Morning all

Jude - loved your blog and you are so brave.

After a few days of scalp tingles but only losing hair as I would do normally it's definitely ramped up today - blond hair on a black bathroom carpet is definitely not a good look. To look at me I don't think the hairloss is particularly noticeable (but not sure how long that may last) and as my scalp isn't particularly sensitive just yet (now that statement could be a jinx) I'm trying to pretend it's not happening and I'm styling my hair as I would do normally. I've got the wig, scarves and hats on standby as I do get that this is inevitable but I'd really like to hang on to it over the weekend just so I can feel like me a little longer.

Obviously I've not got to wig wearing yet but I'm imaging scenarios where it slips / gets knocked or pulled off / or is too hot for me. Am I alone in this paranoia??? Is anyone on here at the wig wearing stage yet that can share their experiences?

Off to get a manicure/pedicure as a treat......

Happy Friday everyone - stay strong and positive

Sue x

[AMB67]

Hi Sally

that is so funny -my chemo brain did not engage there at all although it isn't far from the truth. There has been hair everywhere I have gone.....including the loo!!!

welcome Millsy to the mad house!!!!

A x

[SallyG63]

Morning ladies

Mills, I've finished my EC and am on to the T. I am cold capping and have kept the vast majority of my hair so far. Keep at it, it's worth it. If you want to know anything I'm usually in the June chemo thread.

Amanda, your post made me laugh as I misread it as you shed when you poo (number 2) 🙂

Sally

[Millsy]

Hi ladies new to this website, I’m 46 married with 3 children 2 girls aged 22 and 20 (21 in November really hope I can make her party which is all arranged 😬🙏🏻) I had my first EC chemo yesterday having 4 x 3 weekly then 4 x Docetaxel alongside Pertuzumab and Trastuzumab Emtansine 3 weekly, then Surgery mascetomy on left side with full node clearance I believe, diagnosed mid July IDC grade 2 HER+, ER+ have 3 lumps 1 x 2.5cm and the others in the mm and also in my lymph nodes, wore the cold cap which I didnt find too bad and manageable just made it take 2 hours longer was there for 5 hours in total.  Felt nauseous and heavy headed when got home and no appetite, had an early night slept ok just did lots of pink wees through the night, woke at 5.15 and had some toast and green tea which went down well and tasty which I was glad about because couldn’t even manage toast last night, so see how rest of day goes will probably try to have a little trip out if I can manage it, have a wig appt later which my hairdresser sister is taking me to which is very handy.  Really nice to read your threads and picking up tips along the way and hope I can add to them. Wishing you all the best day possible under circumstances 😊

[AMB67]

Hi Jude

Your blog once again is brilliant.

Good luck for your hair appointment today.

I can't tell you how relieved I was for it to go. I think you just get to the stage where it is so annoying and uncomfortable that anything is a welcome relief. There is still shedding happening going to a number 2 but much more manageable and it's nice to wash your hair and rub the scalp without worrying about a handful coming away.

I too am dreading round 2 next Wednesday but do you know what......bring it on! What else can they throw at us?

We will be very strong women after all this!

Sending big hugs your way

love Amanda

[Jude1962]

The hair loss has stressed me that much that I decided to use it for my next blog - so if you have a spare 2 minutes

https://dancingwithchemo.wordpress.com/2018/08/16/hair-today-gone-tomorrow/

Jude x

[Jude1962]

Hi Subee

The first week is the worse so hopefully you are coming out of the other side now. It’s surprising how quickly you forget how crap you felt.
If you talk to your breast care nurse or the chemo unit they may be able to change some meds which may help with any specific issues that you had

Sorry but I don’t know anything about the trial that you are on but I’m having 3 x EC & then 3 x T along with herceptin

Take care

Jude x

[Jude1962]

Hi Amanda

Well done on braving the shave - I’m having mine shaved tomorrow as I can’t bear all the loose hair flying everywhere - fed up of vacuuming!

I’m hoping it’s liberating

Not looking forward to chemo cycle 2 next week...

Jude x

[AMB67]

Hi ladies

Hope you are all doing ok

Day 15 for me now and had to go for the number 2 shave this morning as the hair shedding and painful scalp was driving me insane. Its the best decision I could have made as it feels much more comfortable.

Don't be afraid..... it is quite liberating.

A  x

[Sunflower18]

Hi Suneeta,

I’m not on the Optima trial but they did suggest it to me in the early stages but as I had 3 nodes involved it was discounted as I definitely needed chemo.

i am on 6 rounds also - 3x FEC and 3x Tec.

i also had lumpectomy and full clearance so similar to your treatment so far. Oh and I’m having radiotherapy, hormone treatment and potential bone strengthening injections? 

The full works I believe!

Take care

jo x

[Subee7]

My friend bought an amazing mouthwash called Biotene for the relief of dry mouths. It is nice and smooth , very soothing.  I haven't had sores just feels like my outh has been burnt inside.

Hope that it might help.

[Subee7]

Hi everyone, i had my first EC chemo last week now on day 9. It has been challenging to say the least. Probably the worst part has been the gastric disturbance, hot flashes at night and insomnia. The constipation was relieved with Laxido recommended by a friend who has been through all of this. I opted to take part in the Optima trial and got assigned chemo for 6 cycles. Wondering if 6 is standard for the trial or in general? Will be asking my oncologist at next appointment. I had lumpectomy and node clearance although only sentinel node involved, got good margins too. Any tips for getting through all this gratefully received.

[Kip]

HI ladies, I remember the loose pubes too!.. Wasn't expecting that, they have mostly all gone, just looks a bit like a "wrap over" style, very attractive... ho hum the things we have to put up with!  I'm on day 4 of my 4 chemo (T now) and still have some eyebrows and eyelashes although a bit thinner so you may keep some of them anyway.   Hair seem to be making a small growth spurt to which is very exciting although it looks white!

[Jude1962]

Hi Multitasker

I’m on day 18 & I’ve got a face full of spots at 56, so you are not alone!
Still got hair down there but it does look to be thinner, my eyebrows & lashes are still ok but I haven’t had any new growth on the eyebrows for about a week. My hairdressers do semi permanent makeup for your eyebrows which is done in individual hair strokes & does look very good so might go for that when I lose my eyebrows
Like you say we are in a club of sharing strange things!

Take care

Jude x

[Multitasker]

Morning ladies

Day 13 and feeling SO much better than last week. Thankfully sleep has improved too. So just as I feel Im getting on top of things unlucky 13 struck.

When I looked in the mirror this morning my face is covered in spots ( feeling very teenage) and my knickers are full of pubes! 

Hope you dont mind me sharing, not sure anyone else would see the sick humour in some of the things that are happening to us!

I coldcapped for first chemo so praying the hair on my head hangs on.

[Jude1962]

Evening ladies hope you are all coping ok

Sunflower - my head is very tingly rather than sore but my hair is coming out in handfuls now

Got a lovely wig today (on the NHS) - Dream Duluxe - the shop are going to cut a fringe in it for me & cut my hair but think I’m going to brave the shave as I can’t bear the prolonged moult!

Fran - I’m a bit worried that I might cry so admire you for going for the shave bravely!
Anna - chemo brain is definitely a condition, I’m struggling to string a sentence together sometimes & ‘lose’ words all the time

Take care all

Jude x

[SB1610]

Hi Anna

I experienced this too - I could forget what I was saying whilst I was saying it. I did find that it passed. All I did was just rolled with it, laughed it off and tried not to worry about it. I also found fresh air and a short walk helped and I've recently started doing puzzles (suduko and arrow words) to help with concentration. I've found I'm better now (I'm on day 14) and to be fair I was starting from a point of menopause brain and been off work a few months brain too...

Hope this helps

Sue

[LambChop]

Hello, I’m on Day 5 following first FEC cycle - I was completely unprepared for how spaced out & confused I’m feeling. Struggling to string a sentence together at times! So weird - anyone else have any experience of chemo brain? I was expecting the nausea and fatigue but not prepared for how chemo affects your thinking. Any tips much appreciated! Thanks, Anna.

[Sunflower18]

Thank you Kip.

yes once the hair is gone, I can’t worry about it anymore!

😂

[Kip]

Hi sunflower I had the same sore scalp for a couple of days before real shedding started, once shaved the soreness stopped. It felt like wearing a hairband all day long and too tight. Big hugs it's a hard part of this but ok once it's gone

[Katluan]

Hi Georgie 

My picc line was fitted the same day as my first treatment, it was painless and hasn't given me any grief since then, sleeping is fine, no issues there and I was also given a cover for the shower which works just fine with no movement restrictions.  You'll soon forget it's there!  Picc covers are a great idea as they make it look 'less medical'.

Like you I still find it uncomfortable sleeping on the same side as surgery, glad I'm not the only one!

F x

[Katluan]

Hello ladies

So I made it to day 12 before the shedding began, I thought I'd get a tingly scalp beforehand to warn me of the imminent loss but no, I have (had) very thick wavy hair so wary of shedding I'd been avoiding the brush and comb and just running my fingers through it in the morning before going to work but yesterday a quick run through left my hand looking like it had a thick coating of long fur lol. Of course morbid curiosity had me do that a few times throughout the day and the loss was great each time, panic stations! As soon as I got home I asked my daughter to shave it that very evening, as I'd lost so much that day I was worried about what would greet me in the morning, having bald bits or scraggly hair would have distressed me no end cos my hair has always been my crowning glory and the envy of the rest of my family. I have to say that was THE BEST decision for me, going from a full(ish) head of hair to bald wasn't upsetting at all, I had expected tears but there were none, from any of us. I think that's because it was my decision to take control and 'brave the shave', of course it's been less than 24hrs so that may yet change haha.  I have a bamboo wig cap and that makes the headgear that I'd bought in preparation comfy to wear, no rubbing or chafing, I don't know how I feel about wearing a wig yet but I guess it's early days.

Local hospital and I are practically on first name terms now as my temperature is high on an almost daily basis but so far no overnight stays or antibiotics have been required so perhaps I'm a naturally hot person, it's just so annoying and time consuming to have to go there all the time even though I know it's necessary....

SE's have been pretty sparse the past few days and as my second round is next week, I'm hoping I'll be feeling ok until then, it's nice to have good days 😎

Chin up everyone and keep posting, it's so good to know we're not alone in this

Fran x

[ktk]

Hi Georgie. Glad to hear you are finally home! I had a Picc line put in the day of my first chemo. It was completely painless. From then on there are no more needles. The district nurse comes once a week to flush the line and takes bloods a couple of days before chemo. I have some very pretty covers from Etsy online. The hospital gave me a Limbo cover for the shower which works a treat. It doesn’t restrict my arm at all, and sleeping on it is not an issue either. Kx

[Sunflower18]

Hi all,

I am on day 15 now of chemo  round 1 and my scalp is so sore. 

It is painful to touch and also painful just sitting around. My hair does feel thinner but it Is not really noticeable to others. 

Has anyone else experienced this?

Is this a precursor to a massive shedding of hair 😀

x

[Jencat]

Hi Georgie, I'm from the Oct thread and just wanted to reassure you about having a PICC line. I had one put in for my chemo. I was quite worried about having it put in, but I didn't feel anything. Also, I found I got used to it being in my arm fairly quickly and it didn't cause me any problems or pain and it did make having chemo a lot easier. The downside was having to be careful in the shower, but you can buy plastic covers for that-I bought mine in Boots, it was about £5. Also you have to go to the hospital every week-10 days to have it flushed, which could be a bit of a nuisance, but I also found it useful at times if I was worried about anything x

[Jude1962]

Oh Georgie, you are having a tough time of i

Long term the picc line should help especially if you need any other treatment antibiotics etc - not that I have any experience of one

Really feel for you as an artist but fingers crossed you will be good as new at the end of all this

I’m on day 15 & I am moulting prolifically now - have to say it’s horrible, I’m dreading washing it tomorrow. Having an haircut on Friday but whether it’s just a short pixie cut or a full blown shave I’m not sure yet

Take care
Jude x

[Paulus]

Oh Georgie Gee
I really really feel for you. My sister is an artist, and I can feel your fears in the same way as if she were telling me. Hope for the best, make sure you tell the staff all your worries so they can be super-careful, and I will keep fingers and paws crossed for you too.x

[Kip]

On Georgie you've been through so much in the last few days you are allowed a wobbld and rant.  I haven't experienced a picc but several on here have and are so happy with them and have no trouble.  I'm sure you'll be fine.  Talk to your nurse about your worries over use if arm I'm sure it will! Be ok.  As for hair, I cried e buckets shaving mine, it is tough but much worse was the constant hair shedding.  As an art student you will rock any look, just see it as a new experiment, j have heard lots if ladies live the bald look and embrace it, I've gotten used to it, although I would be lying if n said j didn't miss my hair.  Allow yourself time and z good cry if n need to, if help s.  Take care 

[Georgie Gee]

Thank you Sue and Jude, 

It is lovely to be home, however I am now counting down until next chemo.  

Can I vent my fears to my fellow travellers please? I'm so scared.... 

I'm now also having a PICC put in 2 days before. Letter was on the doormat.   After the pummelling my right arm has taken the last week or so from needles, IV and blood tests I really don't feel ready for any more.  Of course, left arm is shot because of lymph nodes being taken out.  

I am an artist and I'm scared of losing the use of my arm.  Also, as left arm has some awkward numbness and pain, I've taken to sleeping on my right side, but now I know I will have to be careful about the picc.  Trying to be positive and hoping now though to make my own picc covers.  

Hair is still intact on day 12 today but I'm told it will start to fall soonish.  So am having it cut short tomorrow to prepare.  I think I might cry.  I'm usually very choosy about hair styles; was an art student in the 70's and love playing with style and colour.  

Its so so good we have one another... thank you all for sharing your stories, and for listening to mine.  

Georgie x

[Kip]

Hi ladies, to a!l of you out looking for wigs, try lots of styles and colours it's surprising what ends up suiting you.  I always had past shoulder length hair but cut it really short pre chemo and everyone loved it but I was sure I wanted a wig like my old hair but wow none of them suited me so have gone for a short wig and it looks great and is easy to care for.  It's fake hair but feels real and easy to wash.  Just do it once a week if feel like it, stuck it in the sink with wig shampoo and cold water. Swish around, same with conditioner then pat dry and hang in head stand over night, quick shake in morning and it's back in style.  So easy.  If you can get a bamboo wig liner, it makes it more comfy to wear.  Only downside the they can get warm.  I wear hats or go bald around the house.  For those of you with the head tingles that does sound like the start of shedding, be brave you'll get through it, once it's gone you can stop worrying about when it will happen.  Take care, glad you are all getting through first chemos, I've had no 4 today, first T so I'll let you guys know what's that's like or pop into June chemo starters.  Take care Kip X