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October 2019 chemo starters

aj72
Member

Re: October 2019 chemo starters

Hi Kath

 

Sorry to hear you have lung cancer but glad to hear both are curable.  We are here with you all the way!!!!

 

Amanda 💋

 

 

ClaireL
Member

Re: October 2019 chemo starters

You got this Kath! I hope you're doing ok and that you can get started with everything really soon. 

Sending love x

KathCurtis
Member

Re: October 2019 chemo starters

You are all so kind and lovely, thank you, so good to be part of this group. And someone asked if it’s connected to the breast cancer - no it isn’t! I have two completely separate cancers within inches of each other! So weird. But it’s nit secondary to breast cancer and both are curable so i will get through this 😊
love to you all

Kath

xx

Jencat
Member

Re: October 2019 chemo starters

Hi Kath, so sorry to hear that you've got lung cancer, but so relieved for you that it's been caught very early and that it's curable xx

ajatron23
Member

Re: October 2019 chemo starters

Sending you all the positive vibes kath. I think this is an amazing group of people. So so supportive of you all to be here for each other xxxxx we got this 

Purpletrunks
Member

Re: October 2019 chemo starters

Oh Kath!! Thank goodness they caught it early. Totally rubbish its cancer, but after your dark days it must feel good that its curable. 

 

Is it secondary breast cancer? Or completely different cancer ?

 

At least you can get on getting on now. I feel relief for you, I hope you can at least get some peaceful sleep tonight ❤❤

jasmine1897
Member

Re: October 2019 chemo starters

Kath, 

 

I am sorry to hear about the lung cancer but so relieved it is curable! I am happy for you, and also on the fact your breast lump has shrunk so much! We always worry the worst outcomes of situations and it can take you to a bad place.. I am glad you finally know what you’re dealing with and wish you all the best for your forthcoming treatment x 

Emzlew
Member

Re: October 2019 chemo starters

Oh Kath... 

How terrifying and positive at the same time?!?! This really is a rollercoaster!! 

 

I love that you are super positive and I'm so pleased it's been found early! 

It's definitely a good thing to be positive.  Like the saying "smile and the world smiles with you".  I find this with positivity too.  

 

Keep it going lovely.  The rest of us riding this crazy train are sat beside you! 

Sending love and positivity your way xx❤️xx

KathCurtis
Member

Re: October 2019 chemo starters

Hi all

good to hear everyone’s updates. It sounds like you are all doing super well, especially the boxers amongst us, amazing 😊👌

So got my results today. I have lung cancer as well as breast cancer 😮. Starting a collection! Actually we have caught it super early (stage 1), so will be curable with an op in next couple of weeks! And as breast lump as shrunk so much they may also operate on that and then restart chemo. What a rollercoaster. And i never smoked 😝. But it seems breast cancer has saved my life from lung cancer! Weird.  Thank you all for your kind messages. I had some very dark days waiting for the biopsy results but i am now feeling so optimistic 😊

love 

Kath

x

Purpletrunks
Member

Re: October 2019 chemo starters

Seasalt handybands have been recommended to me for softness and versatility. Bit like a buff...

 

I cant post link as it registers as spam

 

 

leaw
Member

Re: October 2019 chemo starters

Emzlew I want one for being out and about really, I’ve bought lots of hats and scarfs in preparation. I’m going to “glamorous butterfly” in Cumbria for a wig fitting etc, so I’ll see how it goes on Tuesday. Glad your second round went smoother, I have my second round next Friday 15th, had my sickness meds adjusted so hopefully that will help 😬. I’m off for a marker fitted to my lump this afternoon x

Emzlew
Member

Re: October 2019 chemo starters

Hi Leaw

I bought a wig for any bad "no hair" days I might have 🤣  I haven't worn it yet and I'm wearing beanies less and less when I'm and about too. If people don't like it then they don't have to look! It's not our fault 😒

My kids love stroking my head 🤣

It's very strange that all my dark hair has gone and I'm left with an even, all over, almost transparent fuzz?! 🥚👨🏻‍🦲

 

Have felt better this time around.  No sickness, just super tired for the first week.  Went back to my boxfit group on Monday and managed a good 40 mins of exercise.  It felt great!!  

Round three next week.  Bring it on, let's do this! 👍💪🥊

 

Thinking of you today Kath and sending lots of love, luck and strength your way xx❤️xx

 

Emzlew
Member

Re: October 2019 chemo starters

Thinking of you Kath xx❤️xx

ClaireL
Member

Re: October 2019 chemo starters

Hi all, Hair got shaved last week. It was actually ok in the end cos it got so painful where it was falling out!! I have a wig but I absolutely hate it. I tried wearing it out on head shave day but it was itchy and annoying. I keep pulling it down and trying to flatten it out because it's massive to me. So I have gone down the route of beanies and scarves too. So much easier, prettier and warmer!! My little one doesn't seem too fussed but isn't keen on cuddles at night unless I wear my silky bed hat to stop the spiky hair getting him! (I didn't shave down to the scalp, just took most of the hair off!) Good luck today Kath, thinking of you!! Claire
Jencat
Member

Re: October 2019 chemo starters

Thinking of you Kath x

KathCurtis
Member

Re: October 2019 chemo starters

Thank you 🤞

Purpletrunks
Member

Re: October 2019 chemo starters

Hey Leaw

I havent got down the wig route. I think I might have if it was summer but I just cant be bothered tbh. Scarfs and beanies for me.. and baldness!!

leaw
Member

Re: October 2019 chemo starters

Hi Clare, how are you getting on with the hair loss? Mine is defo starting to shed, hoping I can keep it over the weekend as I have my sons athletics presentation & our for a meal on Sunday for my 39th birthday.  Appointment to see about a wig on Tuesday. Have any of you ladies gone down the wig route xx

leaw
Member

Re: October 2019 chemo starters

Thinking of you kath xx

KathCurtis
Member

Re: October 2019 chemo starters

Really thoughtful of you Lou. Thank you 🤞🤞🤞

Purpletrunks
Member

Re: October 2019 chemo starters

Kath, 

Will be thinking of you tomorrow.

Lou ❤❤

Purpletrunks
Member

Re: October 2019 chemo starters

Much love to you and your mum Jasmine. I'm rushing out the door so have nothing useful to say... but you are both in my thoughts xxx

jasmine1897
Member

Re: October 2019 chemo starters

Hi Lath,

 

thank you for your kind words.

 

I am, but trying to keep it together for her and everyone else. She has only just started her original treatment so I’m unsure whether they will stick with this or change? They started the treatment with the thought in mind that it had spread, so I’m unsure. 

thank you for the recommendation of the Macmillan line. It’s nice to be able to talk to someone.

 

i really do hope nothing comes of your lung biopsy, but we have been assured it is still treatable, and with going through treatment who knows how well you will respond! I found it hard to find info on cancer mets from original diagnosis rather than reoccurrence etc. 

wish you all the best. X

KathCurtis
Member

Re: October 2019 chemo starters

Jasmine i am so sorry to hear your mum’s news. That’s just so crap! Have they suggested a management regime as yet? You must be in bits. If you need emotional i can recommend Macmillan. Both by telephone and in person I have found them a great help.

thinking of you. 
my lung biopsy result on Thursday. Horrible.

Kath

x

jasmine1897
Member

Re: October 2019 chemo starters

Hi everyone,

 

just a quick update. My mum has got her blood test today to check all ok to go ahead for second chemo tomorrow. 

unfortunately on Friday, we got the news that the cancer has spread to her liver and bones. She was only diagnosed with breast cancer on the 20th sept 19 so this is quite a bit hit for us. 

Trying to keep positive, hope everyone has a good week x 

VivMc
Member

Re: October 2019 chemo starters

Thanks Amanda,

Will go straight onto Amazon 😊

Viv 🤗

SaskiaE_BCN
Community Manager
aj72
Member

Re: October 2019 chemo starters

Hi Viv  

 

I ordered these. Soft on the inside and lightweight for indoors.  I often wear of an evening when it's a bit colder.   I've nice fur/fleece lined bobble hats/beanies for outdoors.

Amanda ❤👩‍🦲

Screenshot_20191101-094335_Amazon Shopping.jpg

 

VivMc
Member

Re: October 2019 chemo starters

Thanks for all your advice ladies, will take some paracetamol with me..one more drug in my body will make no difference!

On the hairfront, I went and shaved my hair down to a no 3 day before Chemo. Went to my hairdresser and it made me feel like I was finally controlling something my self. I have 2 soft hats but was wanting a soft cotton beenie for the house...

Heart was pounding last night but reckon it was the drugs from yesterday. No nausea so far this morning, it's rhe heartburn that's getting me...feel totally zonked, hopefully steroids will pep me up.

Viv 😊

aj72
Member

Re: October 2019 chemo starters

Hi all

 

Welcome to our new ladies 🙂

 

Quick update from me -  I'm on Round 2 of post lumpectomy FEC (given every third week).  I have Aprepitant (Emend) and steroids on chemo day and for 2 days afterwards then no further meds. My cycle seems to be queasiness for those 3 days, then indigestion/heartburn for 3-4 days for which I take Gaviscon. I then move onto a dry, tickly cough which results in a sore throat and aching ribs, along with many sleepless nights in the spare room.  For this I use a simple linctus and throat lozenges (and good reading materials for the long, nocturnal nights).  Although I don't have bone pain I do experience weird, skin sensations.  I can only explain it as when you touch a bruise you didn't know you had. It can be quite tender when showering as even the lightest touch of a baby soft sponge hurts.  I might add however the eczema I usually suffer has cleared up !  I'm also experiencing an altered sense of taste.

 

I'm aware things can change very quickly and without warning so I take it a day at a time.  I attended my GP to rule out a chest infection (which I didn't have it was just the tickly cough) to discover I had a raging temperature (with no symptoms!) Bloods then revealed very low neutrophils (again with no symptoms!)

 

I am in absolute awe of all of you in this group and the comarardie, strength and support provided to each other (given that we're all strangers).  

 

We've got this ladies.  Let's kick cancer's ass.

👊💪

 

Take care and stay well all of you!!!!

 

Amanda 👩‍🦲❤

 

jasmine1897
Member

Re: October 2019 chemo starters

Annie,

 

my mum is due her 2nd round of chemo on Wednesday and her hair has started to come out, so she asked me to shave it last night. My mum didn’t want to go to a hairdresser but I think the best thing would have been a mobile hairdresser, as it was actually harder than we thought as her hair was thick! So took a lot longer than anticipated but there was some cries and laughs. She had that hair pulling pain but is now gone this morn. X

I think either 2 headwear are suitable, if you google sleep cap they are quite cheap. I’ve heard a silk pillowcase is also a recommendation x

 

my mum had the injections for 7 days, she only got some bone pain but paracetamol worked x

ajatron23
Member

Re: October 2019 chemo starters

Hi all

 

can I ask what headwear people are wearing around the house and at bedtime? I am thinking bamboo beanie or cashmere?! Having held on to my hair during the first cycle it has now decided to leave me ahead of round two today. I have thick curly hair which is now a matted mess and distributed all around the house 🙄. I’m not quite sure how I’m going to deal with it today. Did anyone out there shave their own off or did you go to a salon. 

on an aside note I too had the injections and suffered the bone pain and whilst it was awful I found paracetamol worked for me and quite quickly too. I’ve been advised to take paracetamol in anticipation (assuming there’s no associated temperature) rather than wait for the pain to come x

 

annie

ruthie2
Member

Re: October 2019 chemo starters

Hi vivMc,

i had neulasta injection

after the docetaxel part of my chemo. They aren’t given routinely as they are very expensive ( think over £600) but it is better as it’s only the one injection instead of the multiple ones!
Unfortunately I did find it gave me bone pain so I took painkillers at the same time as I did the injection the next time and it worked a treat.

i did get awful nausea on ec and was given akynzeo to take an hour before and cyclizine for after which didn’t get rid of it but did make it much better.

on docetaxel the antisickness was given intravenously before the drug and I took cyclizine once home. Again it didn’t completely go but was bearable. 
I also found strong lemon and ginger tea with honey was the only drink I could taste and it made me feel better too.

good luck xxxx

 

VivMc
Member

Re: October 2019 chemo starters

Hi purpletrunks,

Thanks for getting back to me 😊. They gave me aprepitant today and have those for next 2 days too. It's the heartburn that's making it worse aswell. I just have to have one injection and as I have to go to hospital tomorrow for Ultrasound  ( they think I have fibroids in uterus, to make my life even more pleasurable) and an ECG so the nurse is going to do it.. my fear of needles is huge and I am a big baby 😂. Think they are giving me jab as have kids living at home aswell and they are full of the cold...

Glad to hear change of meds helped you. Yes I heard that the bone pain is because the injections are working! Sorry to hear you have had problems, with your blood count, hopefully tbey will sort it out soon. 😔

Viv 😊

Purpletrunks
Member

Re: October 2019 chemo starters

Hi Vivmc,

 

Welcome aboard 😊😊

 

A quick google told me neulasta is similar to filagastem (sp?!). I have had the later in both my october chemo rounds as I'm really struggling with my nutrafil levels. I was low before I started, so was given 5 days worth of self-administered injections the first time. Still went severly nutrapenic and only just recovered levels in time for round 2. So 7 days worth given this time.

 

Are you to self administer? I really hate doing this... but I think it's a mental thing as the reality isn't so bad. It doesnt really hurt and is quite easy. I get a slightly greasy feeling about 20 mins later but have been lucky and had no bone pain! But then they don't really seem to be working, and I have wondered if that's why I'm getting no bone pain... because no neutrfils are growing. That of course is pure conjecture, probably fuelled by steroid induced craziness, and far too much time to think 🤣🤣

 

I was also really sick with terrible nausea round 1. But they adjusted my antisickness for round 2 and it's been easier. So make a fuss ❤❤. In fact make a fuss now, because they also amended my meds part way through and it helped.

 

😊

VivMc
Member

Re: October 2019 chemo starters

Hi everyone,

I have just joined this group and squeezed into last day of October. I started my Chemo today. I'm her+ so long year of chemo ahead of me. 

I am feeling really sick despite being given loads of antisickness meds. I was told to get an injection tomorrow, Neulasta? and have read that it is really common to get bone pain. Anyone had any experience?

Rubyblue2
Member

Re: October 2019 chemo starters

Curedars I too have just been prescribed cyclizine tablets as it worked for me in a and e. Just trying to get as much fluid in as possible which I'm starting to manage this afternoon luckily so I hopefully won't need another drip.

Hope everyone else is doing as ok as possible xx

Purpletrunks
Member

Re: October 2019 chemo starters

Hey xx

I'm 41 I could even ! And the fatigue has completely flattened me. Yesterday I had so little energy move my hands to hold a glass.. had to be given water! My jaw was slack with fatigue, and although I dont think I actually dribbled, I wouldn't have had the energy to wipe it if I had. 

 

I'm a bit better today and have managed to sit up for a couple of hours.. but I'm still flattened by it. 

 

It happened to me on round 1 too.. and it did start to ease by day 10. Peaks day 6 for me, which i think is when the steroids leave my system. Think i emotionally crash from them too.

 

Xx

mini mad
Member

Re: October 2019 chemo starters

Sorry... touched the keyboard...

as i was saying... ahem cough !!
i think our bodies adjust to the treatments,  the more we have.

i had 12 weeks of Paclitaxel and every 3 weeks Carboplatin....  or maybe its because we learn how to handle our side effects more efficiently.  
good luck and take a day at a time.

mini mad xx 💖💖

mini mad
Member

Re: October 2019 chemo starters

Hi 68 year old !!!
i'm 69 so i can definately relate to the tiredness/fatigue.... its completely overpowering isnt it 😬😬  but i believe as you have your treatments,  that our bodies k

CureDars
Member

Re: October 2019 chemo starters

Had 1st round of EC on 21st Oct and this is day 10 of the cycle. It is the first time I have had the energy to report back. Although I have not suffered the awful vomiting some of you have, I was completely overtaken by nausea and heartburn and the fatigue has been indescribable! On day 8 I was given Cyclizine and Lansoprazole and everything improved. Have started eating small amounts again. Glad to be back in the land of the living!!! I wonder if my age-68-has any effect on how long it is taking me to ‘bounce back’? Thanks.

KathCurtis
Member

Re: October 2019 chemo starters

Thank you Jasmine, you are so kind 

jasmine1897
Member

Re: October 2019 chemo starters

Hi Kath,

 

ive just seen your post regarding being investigated for possible lung mets, I’m terribly sorry - you think the worst words you hear are “you have breast cancer” but I think as time goes on there’s a lot more to it... how did your biopsy go? I hope whatever the outcome you are given the best plan and there are so many more treatments becoming available now so who knows what the future will hold in regards to treatments! I go with my mum to every appointment. she, like you say, is feeling horrendous waiting and not knowing. 
thank you for your kind words and please be assured you are surrounded by lots of support x

KathCurtis
Member

Re: October 2019 chemo starters

Hello Jasmine 

sorry to hear your mum’s news. Hope it’s nothing ominous. These times spent waiting for tests and diagnosis are the worst, so grim. Once you all know what you are dealing with and have a plan it will probably feel a bit better. That’s what I am hoping. Your mum must be so glad of your support, but it’s hard on you and all our loved ones. Thinking of you 

kath

x

jasmine1897
Member

Re: October 2019 chemo starters

Ruby blue, 

im sorry to hear how bad you felt on your first round of FEC! Like others have said, please be assured that they are now aware of your side effects so will try everything to get these under control for next time! I am also glad you’re feeling some relief now. Please rest up x

 

a small update as my mum is now 14 days post chemo cycle (herceptin/docetaxol/pertuzemab) and side effects have been minimal! After struggling with Lymphedema due to cancer in the nodes, the swelling has started to go down after getting progressively worse for 8 weeks!

And some not so good news.. after something showed on her ct scan in liver, after an mri she was told ‘theres something there’ but it cannot be confirmed until a specialist has confirmed and then a possible PET scan. This is quite a shock as she only initially got diagnosed on 16th September. 

we’re all keeping positive and have a lovely Wednesday x x

KathCurtis
Member

Re: October 2019 chemo starters

That sounds horrible Rubyblue. So sorry. Good to have got help and here’s hoping they can make sure you don’t struggle like that again!

kath

x

Purpletrunks
Member

Re: October 2019 chemo starters

Oh Rubyblue, sending so much love ❤❤

 

Dont lose hope... I was pretty sick with my first FEC, they changed my sickness meds this time and got it under control. No pukey pukey at all for me this round.

 

You must be so pleased to at least be at home. 

 

Let us know how you are in the morning, we are all here for you xxx

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

Ruby blue 👭sorry to hear you’ve been 🤮 they will tweak your meds till they get right combination so you did right thing not trying to battle through and getting yourself in 👍always do that. Also some ladies used travel sickness bands which helped so maybe you can try them? My meds were akynzeo and metroclopromide and I had no sickness or loss of taste during chemo, so maybe worth a mention to see if they could try you on that combination? I know different things work of each of us, but just wanted you to know about this combination. 💕💕shi xx

Rubyblue2
Member

Re: October 2019 chemo starters

Evening. Just a quick update from me- had first FEC yesterday (can't believe only yesterday) and unfortunately not plain sailing for me. 2 hours after the end of chemo I was really sick and faint and then so so sick all afternoon / evening (I'd had all the sickness meds including emend and it didn't touch the sides). Also numbness in both arms and a bit in legs so ended up in a&e as the chemo assessment unit was full- so from 10 last night until about 5 today been in hospital having cyclizine (amazing by the way) and a drip as my sodium was low. In a way I'm not surprised as I was told if you have bad morning sickness you're more likely to be affected by the sickness and I always respond to any meds with side effects! I'm back home though, in my own bed after hours on a  trolley and touch wood at the moment I'm feeling ok. I can still call the district nurses out as well to give metroclopromide as well xx

KathCurtis
Member

Re: October 2019 chemo starters

So sorry to hear how FEC is affecting people, and a little anxious as I will move on to that in January. 
I wonder if you have all found Dr Liz O’Riordon on twitter - breast surgeon who had triple negative breast cancer and a recurrence. She and a GP who also had bc (Trisha Grrenhalgh) have published a very practical, non scary, helpful book “The Complete Guide to Breast Cancer”. Very good. One of the things they recommend for when undergoing chemo is to drink two litres of water a day and to drag yourself out for a walk every day. Hearing your experiences it sounds like every day maybe way too ambitious! Still i think the book is helpful.

i am trying to live in a positive emotional space atm. Wishing times of warmth and hope for everyone today.

love 
Kath

x