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June 2019 chemo starters

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Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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 

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Re: June 2019 chemo starters

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


@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


 

Member

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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)

 

Member

Re: June 2019 chemo starters


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. 🤞


 

Member

Re: June 2019 chemo starters

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. 🤞

Highlighted
Member

Re: June 2019 chemo starters

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


@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 🙏🥰💕


 

Member

Re: June 2019 chemo starters


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 💖


 

Member

Re: June 2019 chemo starters

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 💖

Member

Re: June 2019 chemo starters

😬😂😂😂😂 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...

Member

Re: June 2019 chemo starters

Ps yes Fleabag was right about hair! 

Member

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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 🙏🥰💕

Member

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

Thank you 👳🏻‍♀️🤗

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

Member

Re: June 2019 chemo starters

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 ☺️👳🏻‍♀️👩‍🎤

Member

Re: June 2019 chemo starters

You look lovely xxx


@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 ...!!! 5650BECB-80A6-4132-9F85-A264ECDCB040.jpegThis was a scarf I bought from ASOS. I wore a sleep cap underneath.

 


 

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

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 Community Champion
Community Champion

Re: June 2019 chemo starters

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

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Re: June 2019 chemo starters

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 ...!!! 5650BECB-80A6-4132-9F85-A264ECDCB040.jpegThis was a scarf I bought from ASOS. I wore a sleep cap underneath.

 

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Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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 Community Champion
Community Champion

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

Take care yourself xxx


@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


 

Member

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

Hi

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

Hope it goes well 🙂

Member

Re: June 2019 chemo starters

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 

Member

Re: June 2019 chemo starters

  • 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

 

Member

Re: June 2019 chemo starters

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 😴

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Re: June 2019 chemo starters

Hugs to you all ladies. It is so nice to be able to read how we are all getting on.

 

On the hair conversation; I expected to have lost body hair by now. I have had one EC and did the cold cap and hoped to save the head hair and lose the rest quickly. Looks like I will have to shave the legs again.Smiley Frustrated 

 

I have put on a few pounds and blame it on the Steroids. That's my story and I'm sticking to it Smiley LOL

 

Woke up yesterday with a sore throat. Turned out it was Oral Thrush. The unit were great and I have tablets and green mouthwash. I suppose there have to be some side effects.

 

HeartHeartHeart

 

 

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Re: June 2019 chemo starters

Thank you for the reassuring comments Smiley Happy 

Member

Re: June 2019 chemo starters

Hi Chicken81, I just wanted to add to Kip's reassurance about permanent hair loss after T. Tbh, I'd not heard about that, but speaking personally, my hair has come back just as thick as it was before I started chemo in Oct '17 xx

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi ladies, love reading your posts and your are really supportive to each other.  Seems you are all hitting the "hair" stage at the moment.  It's really difficult to give a time scale for losing all your hair, we all differ.  Mine was really really falling out in handfuls by day 15 of first cycle I think, I then had it shaved off and the prickly bits dropped out a few days later.  As for hair elsewhere,  it was strange coz I didn't notice at first but a few weeks later I realised "everywhere" was very sparse and then it just disappeared, under arms, legs etc.. all gone.  Eyebrows and eyelashes seemed to be much later, probably by about chemo cycle 4-5.  Bonus is underarm hair and leg hair doesn't grow much now either!

If you are having the "T" (docetaxol) part of chemo then I have read it can cause permanent hair loss but I think that is very rare, not seen anyone on here suffering from it.  And a great proportion of ladies found their hair grew back whilst on T, mine certainly did, it started sprouting by cycle 6.  And as at least 1 of you has remarked, the relief when its not falling out in handfuls is immense, somehow you just have to pick yourself up and carry on, and its so much cooler during the summer, I used to just dunk my head under the taps last year during the hot spell!  Every cloud hey.

I also see some of you are suffering the tears of the steroids, hang in there it does pass, mine used to last a couple of days after I had finished the steroids and I got used to expecting it (OH and kids used to nod knowingly at me and mouth "steroids" to each other) Smiley Wink

Kip

x

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Re: June 2019 chemo starters


@mini mad wrote:

Just wondering how long it will take to lose all my hair..  been 13 days now n still got long bob length sides, front and top even though its thinning out..  still have eyebrows, lashes and nasal hair !!

 

how long did you all leave it before you had your head shaved ?

xx



I had mine done Monday so that was day 19, I still had lots of hair as thick but was coming out more each day. Still got eyebrows and lashes thankfully x

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Re: June 2019 chemo starters

Just wondering how long it will take to lose all my hair..  been 13 days now n still got long bob length sides, front and top even though its thinning out..  still have eyebrows, lashes and nasal hair !!

 

how long did you all leave it before you had your head shaved ?

xx

Member

Re: June 2019 chemo starters

Hi chicken

Glad you feel ok about shaving hair off. It’s so quick showering and hair washing now lol xxx

Member

Re: June 2019 chemo starters

Oh ps.... This forum censors your bad words! 

I didn't write bleep! 

S**t

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Re: June 2019 chemo starters


@mini mad wrote:

Sorry you are feeling weepy Alvilajo,  not really surprising 💖

ring one of the nurses on here and have a chat ,  see what they say.

hope it makes you feel a bit easier to talk about things.  Big hugs  💖💖😘


Sometimes it's good to just cry. 

We're going through an absolute shed load and it's horrible, let it come out. Don't hold it back, if you fancy a cry just do it! 

I cry after a day or two as I'm simply sick of that cannot move body feeling, but mentally you want to move. That gets me down, cry, then it's out. 

But if you need to talk, try family, friend, us, a nurse, this site has nurses, macmillan? 

I only get one day of steroids, it's not the next day, but day after I would say I get emotional. 

 

You know the other day I was like... **bleep** I've got cancer! I still sometimes want to think I haven't! It's hard going though, we're all here for each other x 

Member

Re: June 2019 chemo starters

Hi ladies, I tried to attach a pic, but it just doesn't get passed the loading stage, so I'll try again another time. 

 

Thank you all for the advice, I'll get some more 'options' next week. I'll just use wig, beenie and caps n sleep hats this week.

 

I loved!!! Getting it shaved. 

My friend / hairdresser turned me away from mirror so I didn't see it happen. Afterwards I turned around and then just laughed, was either that or cry, but why cry I wanted it... Was just weird seeing myself with no hair.

But I love having no hair come out, what a relief it was to wake up this morning and know I dont have to go into the bathroom and gag at brushing dead hair out, or have a day full of hair falling out all over the place. 

I went out straight away wearing my wig, that's it, wish I shaved from the start and didn't bother with the cold cap! 

Thank goodness I'm not using it anymore! So so so happy...

Then someone commented saying after EC are you having docetaxel, as that's can cause perm hair loss! 

Well I am having that next along with two other drugs, then dox injections, so tough... Cannt think about that comment csn I? 

 

 

Just been on phone to doc as nothing I buy is helping my heart burn, new side effects after cycle two. So got to get a prescription for some proper stuff, he said what I've bought it light relief, but since it's a side effect ftom chemo I'll need something stronger. 

 

Great, I'll get that later on then Smiley Happy

 

 

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Re: June 2019 chemo starters

Sorry you are feeling weepy Alvilajo,  not really surprising 💖

ring one of the nurses on here and have a chat ,  see what they say.

hope it makes you feel a bit easier to talk about things.  Big hugs  💖💖😘

Member

Re: June 2019 chemo starters

I'm so sorry you're feeling like this Avilajo x I think the steroids can affect you like this. I remember feeling low a few days after my first chemo. Is it worth phoning your chemo unit or maybe speaking to one of the nurses on here? Sending you a hug xx

Member

Re: June 2019 chemo starters

Since chemo yesterday I’m an emotional wreck just can’t stop crying. Did someone say steroids do this? Xx

Member

Re: June 2019 chemo starters

Hi Chicken81

 

Just popped in from the February group and like you I've got a wig, well two infact, and needed something easy to pop on but still looks pretty. I found Annabandana on line. They have a brilliant choice of reasonably priced headwear in different styles, colours and materials. Hope this helps. Susie B xx 

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi sorry I didn't say did I.  My oral one was different to the hospital ear one but my ear one was the same so I stuck with that.  I think if you feel happier with the oral one stick with it if it isn't vastly different.  The day I ended up in hospital with a high temp I just knew I didn't feel well,  so trust your gut too. 

Member

Re: June 2019 chemo starters

I found some really good cheap sleep caps which can also be worn under headscarves on Amazon by a company called Deserina. 

Good luck!