June 2019 chemo starters

[Alvilajo]

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@rubythursday wrote:

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Hi Alvilajo, great news no tears today. Very possible injections caused headache, did you check with your chemo team and find something to control them? 

Re every session worse than the last - I think that can be true for some but not all, every round is different but it can also be predictable in terms of side effects. Might be worth noting down when in the cycle you felt more human, didn’t feel great etc. I have heard of some lucky ladies who sailed through with nothing more than needing an afternoon nap, also those who had a bad cycle followed by a pretty side effect free one. There is just no way of knowing sadly as we all react differently. Keep your chin up and remember you have one less chemo to go now. Ruby xxx

@Alvilajo wrote:

Day 7 from 2nd ec, I feel a bit more with it today but still very tired. Plus side I’ve not cried today. Had a two day headache, assuming injections causing them along with sore throat. I’m praying that not every session is worse than the last 

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Waiting for a call back 
I’ve been taking paracetamol but only work for two hours max x

[rubythursday]

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Hi Alvilajo, great news no tears today. Very possible injections caused headache, did you check with your chemo team and find something to control them? 

Re every session worse than the last - I think that can be true for some but not all, every round is different but it can also be predictable in terms of side effects. Might be worth noting down when in the cycle you felt more human, didn’t feel great etc. I have heard of some lucky ladies who sailed through with nothing more than needing an afternoon nap, also those who had a bad cycle followed by a pretty side effect free one. There is just no way of knowing sadly as we all react differently. Keep your chin up and remember you have one less chemo to go now. Ruby xxx

@Alvilajo wrote:

Day 7 from 2nd ec, I feel a bit more with it today but still very tired. Plus side I’ve not cried today. Had a two day headache, assuming injections causing them along with sore throat. I’m praying that not every session is worse than the last 

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[Alvilajo]

Day 7 from 2nd ec, I feel a bit more with it today but still very tired. Plus side I’ve not cried today. Had a two day headache, assuming injections causing them along with sore throat. I’m praying that not every session is worse than the last 

[whlsarah]

Thank you EnglishRose x

[EnglishRose2019]

You look awesome!! I love the scarves 👳🏻‍♀️  

Keep sharing the pics girls 🤗🤗🤗

Nicky 

x

[whlsarah]

Thank you 😊 Rubythursday x

[rubythursday]

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Great news - you are free!

@Zed51 wrote:

I know I’m paranoid about all the germs! Had CT scan, all clear, your dancing must’ve worked, can GO HOME WHOOP WHOOP! X

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[rubythursday]

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You look fab, nice scarf tying 😊

@whlsarah wrote:

Glad you’re heading home Zed51! 

I shaved my head last Monday. Number 1 all over. I wished I’d done it sooner. It was liberating! 

I have mainly been wearing scarves and bandanas. 

Some pics.... I’ve been getting inspired by Instagram posts 

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[whlsarah]

Glad you’re heading home Zed51! 

I shaved my head last Monday. Number 1 all over. I wished I’d done it sooner. It was liberating! 

I have mainly been wearing scarves and bandanas. 

Some pics.... I’ve been getting inspired by Instagram posts 

[Alvilajo]

Great news xxxx

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@Zed51 wrote:

I know I’m paranoid about all the germs! Had CT scan, all clear, your dancing must’ve worked, can GO HOME WHOOP WHOOP! X

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[Zed51]

I know I’m paranoid about all the germs! Had CT scan, all clear, your dancing must’ve worked, can GO HOME WHOOP WHOOP! X

[mini mad]

Hope you've got your face mask on 😷😷😷😷

keep away from any germs lurking about ! 😲😲

hope you're out soon.  Mini mad xx

[Zed51]

Yeah ladies dance me out! Whichever way or tune! Still waiting ct. very poorly people in here tho which I’m not so trying to be a patient patient! 😱

[Shi]

Zed 👭👭💪💪👭👭sorry you are having weekend casa nhs visit, time to get a 💃🏻💃🏻🕺🕺💃🏻💃🏻Get your girl out of casa nhs dance everyone, don’t ask me why but it always works whenever one of thread ends up there, so zed you pick the tune and the rest of the thread will 💃🏻💃🏻🕺🕺💃🏻💃🏻You out of there home 😁Chuck for sore arm/hand ibufen gel and one of those microwaveable heat pads 😘😘💕💕✨✨Shi xx

[EnglishRose2019]

Hi

I had headache turning into migraine for 4 days. Just carried on taking paracetamol and ibruprofen and drank loads of water and lay in a dark room. I then made a GP appointment and they have prescribed a migraine nasal spray. The pharmacist refused to give my husband anything. 

Feeling for you. It’s awful. 

[rubythursday]

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Hiya, sounds horrid- only thing helped me was anadin extra, check with chemo team that your bloods are ok though as it has aspirin in it. Xx

@mini mad wrote:

Hi Ruby,

ive had a rotten headache now for 3 days.

tried taking a mixture of paracetamol and ibuprofen but just wont go.

when you had your nightmare migraine what did you take to help ??

hope you're going on ok and good luck with new med on wednesday.

mini mad xx

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[mini mad]

Hi Ruby,

ive had a rotten headache now for 3 days.

tried taking a mixture of paracetamol and ibuprofen but just wont go.

when you had your nightmare migraine what did you take to help ??

hope you're going on ok and good luck with new med on wednesday.

mini mad xx

[EnglishRose2019]

That sounds sensible. Glad you’re being looked after. My nearest Maggie’s is 40 minutes away but have found good yoga on youtube. Will touch base tomorrow to see how you’re getting on XX 

[Alvilajo]

Feel for you zed51, do you feel any better in yourself. Xxx

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@Zed51 wrote:

Hi no unfortunately still waiting ct scan. Think unlikely on a Sunday. Yes yoga breathing definitely on my list. I’ve been to yoga before this started & hoping get back into it. There’s even free sessions at our local Maggie’s Centre so might try that. Resigned to possibly staying in overnight again but ward is ok & has outdoor area so tolerable with food parcels from visitors! Thanks for good wishes xxx

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[Zed51]

Hi no unfortunately still waiting ct scan. Think unlikely on a Sunday. Yes yoga breathing definitely on my list. I’ve been to yoga before this started & hoping get back into it. There’s even free sessions at our local Maggie’s Centre so might try that. Resigned to possibly staying in overnight again but ward is ok & has outdoor area so tolerable with food parcels from visitors! Thanks for good wishes xxx

[Alvilajo]

Hi thanks for thinking of me, I feel as if I’m back in the land of living today. What a emotional zapped unreal 4 days I just had. Hope everyone else is ok after there own ups and downs x vic x

[EnglishRose2019]

Are you feeling a bit better today?? I hope so. And great suggestion re help to stop smoking from another chemo friend on this thread. 

Your body will be going through so much and the steroids are probably making your emotions go all over the place. 

Are you able to lie down and put on a face mask and relax for 15 minutes? Anything is good to help you chill xxx

[EnglishRose2019]

Hope you’re home??? Are you feeling better??? I think you’d have been justified going for the hair loss alone however 😉

Once you’re feeling better do try some yoga breathing techniques (you also might remember them from giving birth 18 years ago!!), you may already be doing them  Obviously won’t stop the cause but incredibly beneficial for increasing oxygen around your body, and helping with stress, particularly after chemo. Take care x

[Chicken81]

Alvilajo, my mam stopped smoking but used a nhs smoking nurse from her doctors. Basically they give you the correct dosage of patch and vapour oils, and wean you off carefully. If you're not doing it via a nurse, might be helpful? 

Hope you're OK Zed and you're out of hospital soon. 

Don't know if I asked. Anyone get a sore arm n hand ftom the canular? 

First time, I had nothing, this second time ftom day four my hand n arm hurt..??

Called up ward, but as there's no redness it's not a problem, just EC is hard on vein. 

In other news, my hubby has shaved his head to a number two (he has often wore his head shaved, but was jealous of my head shave) and my sister is shaving her head today.

(although she's a convert Muslim and wears a scarf outside so the outside world won't know, us n family will)

[rubythursday]

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Better to be safe on chemo, hopefully a false alarm but if there is something there you are in the right place for swift action. Being in hospital is grim, like going into another time zone - I had the ‘pleasure’ of five days as in inmate first round of chemo and I spent quite a lot of that plotting escape routes in my head!

I hope the pain has eased and you get to spend the day with your family xx

@Zed51 wrote:

Well now ended up spending a night in hospital- not for radical hair loss 😝 but tightness / soreness in upper chest, chemo line said to come in be checked, of course Saturday so not very speedy, had X-ray, blood tests, waiting scan to exclude what they think is unlikely to be blood clot but have to be careful. Haven’t stayed in hospital for over 18 years since my last son was born! Hopefully out today to at least get Sunday afternoon with family. 🤞

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[Zed51]

Well now ended up spending a night in hospital- not for radical hair loss 😝 but tightness / soreness in upper chest, chemo line said to come in be checked, of course Saturday so not very speedy, had X-ray, blood tests, waiting scan to exclude what they think is unlikely to be blood clot but have to be careful. Haven’t stayed in hospital for over 18 years since my last son was born! Hopefully out today to at least get Sunday afternoon with family. 🤞

[Alvilajo]

Hi my 2nd round was Wednesday, after my 1st round I had 4 good days straight off but this time completely zapped out and emotions all over the place. I went to my granddaughters school fete for an hour xx

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@EnglishRose2019 wrote:

That’s really difficult. When did you have the second round?

But I am a great believer in crying. It releases stress and hormones and I honestly think it can help. But also if you can get out for just 30 minutes a day (at whatever pace) to get oxygen in your system that helps too!! Yesterday I looked like a 90 year old and had to stop the traffic to cross the road I felt so fatigued, but was glad I did it as felt better in myself. 

We are all coping with a lot atm. Look after yourselves 🙏🥰💕

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[rubythursday]

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Hi mini mad,

I am ok thanks, I still weirdly have all my hair minus a very small amount of shedding. That will change in a couple of weeks after my new chemo starts on Wednesday as I will lose it all then. Glad you didn’t react to the Paclitaxel, what a relief!

Keep those fluids up..and take paracetamol or ibuprofen if you feel rubbish, just check temp before....I am off now to carry on my batch cooking for the freezer for the days when I can’t taste anything and am too fatigued to cook..sun dried tomato and broccoli soup, beef bourginoun (sp?) homemade chicken bone broth so far with ham, turkey and leek pie, sweet potato, coconut and lentil soup  and quiche to do later. Most of it done in my Instant Pot, blooming useful bit of kit!

Ruby xx

@mini mad wrote:

Hi Ruby,

hows things going for you ??

did you get your hair buzzed yet ??

just washed mine n still coming out ,  got bob length at sides, front n crown but soo thin under that 😳😳

had my 5th paclitaxel yesterday,  but saw dr first cos had a miserable 4 days this week.

told me i was dehydrated thats why i felt bad.  So up fluids to 4/5 x 500 ml to equal 2 1/2 ltrs per day.

didnt get any reaction to chemo so pre meds must be accurate now.

Big hugs as always xx 💖

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[mini mad]

Hi Ruby,

hows things going for you ??

did you get your hair buzzed yet ??

just washed mine n still coming out ,  got bob length at sides, front n crown but soo thin under that 😳😳

had my 5th paclitaxel yesterday,  but saw dr first cos had a miserable 4 days this week.

told me i was dehydrated thats why i felt bad.  So up fluids to 4/5 x 500 ml to equal 2 1/2 ltrs per day.

didnt get any reaction to chemo so pre meds must be accurate now.

Big hugs as always xx 💖

[EnglishRose2019]

😬😂😂😂😂 A great show!

As planning on a full scalp shave probably next week I’ll be watching the hair threads! Let me know if a no.2 I think Shi suggested is the best idea...

[Zed51]

Ps yes Fleabag was right about hair! 

[Zed51]

Hi EnglishRose loving the look. You are clever with a scarf! I have a variety of scarves I already own & a couple of little hats I bought in prep. I had my second FEC on Thursday & had already chopped to short pixie cut from long thick below shoulders so not such a shock but still sad. Just balding patches above my ears at the moment but only noticed last night & about to brave the shower so might be booking a head shave imminently! Thanks for other people replying I am crap at remembering names apart from the one I reply to! By the way  I remember someone saying the short shave leaves painful prickles. Better to go number 2 shave to leave a bit of softness???? What do you guys recommend? Zoe xxx

[EnglishRose2019]

That’s really difficult. When did you have the second round?

But I am a great believer in crying. It releases stress and hormones and I honestly think it can help. But also if you can get out for just 30 minutes a day (at whatever pace) to get oxygen in your system that helps too!! Yesterday I looked like a 90 year old and had to stop the traffic to cross the road I felt so fatigued, but was glad I did it as felt better in myself. 

We are all coping with a lot atm. Look after yourselves 🙏🥰💕

[Alvilajo]

It’s ok. I just feel so low since 2nd round of ec. Hard to stop crying at times xxx

[EnglishRose2019]

Thank you 👳🏻‍♀️🤗

How are you getting on with just using your nicorette??? Good I hope. Stay strong 👊🏻

[EnglishRose2019]

You have made me laugh so much this morning with your post 😂. Thank you!! Please please please post some pics of your steroid crazy wigs! Would LOVE to see them.  I went a bit boring after getting my haircut in a bob so my wig is quite like my hair (though I nicer shade of blonde! )

Feeling a bit better this morning day 6 round 2. Yesterday my skin and body hurt to the touch. Not quite so sore today.  

Enjoy your Saturday ☺️👳🏻‍♀️👩‍🎤

[Alvilajo]

You look lovely xxx

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@EnglishRose2019 wrote:

It’s a bit of a shock isn’t it? However prepared you are... I’m sorry I don’t know your story and if you’re using a cold cap but my hair has started to fall out A LOT this week (2nd round EC) and I am just trying to embrace the ‘turbans are cool’ look. Don’t know if you watched Fleabag? But her line in the second series of ‘don’t you know hair is everything?’ is  most poignant atm ...!!! This was a scarf I bought from ASOS. I wore a sleep cap underneath.

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[Shi]

Zed51 👭👭sending ❤️It’s 😢when hair starts to shed ❤️Have you already gone from long to bob or shorter before chemo? I buzzed myself be to no 2 when it started to shed, felt like I’d taken back a bit of control of hair by doing that if you hat makes sense ❤️Sending ❤️💕💕✨✨Shi xx

[Shi]

Lucy lump fec does turn you pee red then pink till you flush it through. Don’t hesitate to get to a&E over the weekend, take your red card that you should have been given that says you need seeing and treating urgently. Also check with one of the nurses on here too to check ❤️❤️English Rose great photo 👍well glam 👍I looked like Kenneth Williams from carry on up the Kybur when I tried to style it out like you have done beautifully so I would as wig girl all the way, blue, purple, tinsel the lot you name it is got it 😁 it was called steroid crazy shopping time 😁I could control my buying finger 🤭💕💕✨✨Shi xx

[EnglishRose2019]

It’s a bit of a shock isn’t it? However prepared you are... I’m sorry I don’t know your story and if you’re using a cold cap but my hair has started to fall out A LOT this week (2nd round EC) and I am just trying to embrace the ‘turbans are cool’ look. Don’t know if you watched Fleabag? But her line in the second series of ‘don’t you know hair is everything?’ is  most poignant atm ...!!! This was a scarf I bought from ASOS. I wore a sleep cap underneath.

[Zed51]

Just noticed patch of hair gone. It’s leaving me ☹️

[LucyLump]

Hi, can I just ask did anyone find their wee went orange? Mine was red straight after first chemo yesterday, then clear and now orange. No other symptoms and temperature normal. Drinking loads but it is still orange. I phoned helpline and they just said drink more. I am but it is still staying the same. Xx

[Shi]

Alvilajo 👍good girl stopping 👍really proud of you 👍day I got diagnosed I got home and chucked everything in the bin and never touched another one since 💪💪👍👍you can do it 👍👍💪💪💕💕✨✨Shi xx

[Alvilajo]

Take care yourself xxx

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@EnglishRose2019 wrote:

You’re doing brilliantly not smoking and you will be so pleased when you break the addiction. Keep at it!! Try and stay strong as your body will be craving it.

Also in low mood after chemo Monday so will just be kind and look after myself for the rest of the day. 

Take care everyone xxx

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[EnglishRose2019]

You’re doing brilliantly not smoking and you will be so pleased when you break the addiction. Keep at it!! Try and stay strong as your body will be craving it.

Also in low mood after chemo Monday so will just be kind and look after myself for the rest of the day. 

Take care everyone xxx

[Alvilajo]

How are you all today, I’m struggling with energy and mood and I’ve giving up smoking which prob isn’t helping my mood, had my last two on wed Before my chemo. I’ve got a nicorette inhaler but it’s not quite the same. I know I’ve got to do this and it will get easier with time x

[EnglishRose2019]

Hi

I’m on EC and take my tablet an hour beforehand but still allow 1-2 hours. 

Hope it goes well 🙂

[Chicken81]

Quick question... 

Now I'm ditching the cold cap. 

Will I be in and out in a hr? 

Cold cap put loads of time before n after. 

Just wondering what it's like without? 

Nurse said I can take my son in the summer holidays as it helps them deal with it. 

He's already planning how he will document everything he sees, he's 10 and being very mature about everything 

[rubythursday]

• Hello lovelies,
• no idea why I am making bullet points!
• anyway re hair, I had taxol and my hair did come back a little thinner but went from straight to curly and has stayed curly.
• also re hair, please check what chemo you are on and hair loss, not all chemotherapy causes complete hair loss, thinning could be as bad as it gets...carboplatin and weekly paclitaxel I have been told only causes complete hair loss in about fifty percent of people, some just get a little thinning. Fec and ec do cause alopecia, on taxol I lost every hair on my body (the leg hair comes back annoyingly quickly!)
• my funding appears to have been approved for carboplatin/Abraxane, starting next Wednesday it will be three weekly so I will be joining most of you with the cooling, liberating, cheekbone defining baldness.
• headscarves - I spent loads on various contraptions to wrap round my head last time but went back almost always to a very long thin scarf tied in various ways. I found my wig and hats wayyy too hot a lot of the time! My grandson who was three at the time wore my wig more than me!
• hugs to all of you with or without side effects, this too shall pass.
• Ruby xxx

[Zed51]

Hi everyone 

just had second lot of FEC. wasn’t nice but only took one attempt to put cannula in hand this time rather than 4 last time so that helped! Feeling the heaviness descending in my head this evening but at least know vaguely what to expect this time. In retrospect I think steroids (3 days) finishing made me quite low last time but just thought it was me, but makes sense. Anticipating hair loss despite cold cap so interesting reading shave stories!

Chicken81 I’m also a teacher and not venturing anywhere near during treatment, not a very sanitary environment! Hope you all have a good evening, think I’ll need early night 😴