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June 2019 chemo starters

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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 πŸ’–


 

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 πŸ’–

Member

Re: June 2019 chemo starters

πŸ˜¬πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ 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 πŸ™πŸ₯°πŸ’•

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

Highlighted
Member

Re: June 2019 chemo starters

Thank you πŸ‘³πŸ»β€β™€οΈπŸ€—

How are you getting on with just using your nicorette??? Good I hope. Stay strong πŸ‘ŠπŸ»

Member

Re: June 2019 chemo starters

You have made me laugh so much this morning with your post πŸ˜‚. 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 β˜ΊοΈπŸ‘³πŸ»β€β™€οΈπŸ‘©β€πŸŽ€

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 β€˜turbans are cool’ look. Don’t know if you watched Fleabag? But her line in the second series of β€˜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 πŸ‘­πŸ‘­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 β€οΈπŸ’•πŸ’•βœ¨βœ¨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 πŸ‘well glam πŸ‘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 πŸ€­πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

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 β€˜turbans are cool’ look. Don’t know if you watched Fleabag? But her line in the second series of β€˜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 πŸ‘good girl stopping πŸ‘really proud of you πŸ‘day I got diagnosed I got home and chucked everything in the bin and never touched another one since πŸ’ͺπŸ’ͺπŸ‘πŸ‘you can do it πŸ‘πŸ‘πŸ’ͺπŸ’ͺπŸ’•πŸ’•βœ¨βœ¨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 πŸ™‚

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

 

 

Member

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

Member

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 πŸ’–

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  πŸ’–πŸ’–πŸ˜˜


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

 

 

Member

Re: June 2019 chemo starters

Sorry you are feeling weepy Alvilajo,  not really surprising πŸ’–

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  πŸ’–πŸ’–πŸ˜˜

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!

Member

Re: June 2019 chemo starters

Hello

I’m new to the group today. Just had my 2nd round of EC on Monday. Much easier to cope and just taking more anti-nausea drugs, paracetamol and ibruprofen to get through the worst days. 

My hair is now falling out big time. I never wanted to cold cap because of headaches and treatment time, but it is still a shock when it starts coming out in your hands! I think I’m going to my sons barbers to get it shaved off next week... just before my 30th school reunion πŸ˜–

So I’m with you going bald but have a wig, headscarves and big earrings at the ready!

Member

Re: June 2019 chemo starters

Hello Kip.

 

you didnt say if the readings were different  ??

think i will still use my oral thermometer...  couldnt tell from my ear one if my temp was low or not πŸ€·β€β™€οΈπŸ€·β€β™€οΈ

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

I also used to take my temp at random times throughout the date and night!!   I bought a new ear style one when I started and took it along to my chemo cycle and asked the nurse to use hers and then mine to see if they differed much.   I had to write down the readings every day coz I could never remember what they were!

Glad to hear the cycles are begin to get ticked off for you all, first one is the worst because you are waiting and wondering whats going to happen and the "hair"  stuff is going on.  

Keep on going girls, you are doing well

Love

Kip

xx

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Mini mad, I was always taking my temperature during chemo, I had one by the bed and one downstairs, I would have had one in every room but think my oh might have thought I’d lost the plot πŸ€ͺπŸ€ͺthat’s right I did through chemo πŸ€ͺπŸ€ͺI think getting hospitalised for 6 days after 1st chemo made me very cautious, nothing wrong with that, we all navigate it our own way πŸ‘πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

Re: June 2019 chemo starters

I did first couple of weeks but as I felt better I stopped x


@mini mad wrote:

Another session out the way πŸ‘πŸ‘

do you take ur temp. everyday ??


 

Member

Re: June 2019 chemo starters

Another session out the way πŸ‘πŸ‘

do you take ur temp. everyday ??

Member

Re: June 2019 chemo starters

Just finished chemo, pic line fine but had clip removed it was sore and itchy.


@mini mad wrote:

 

Picture please....πŸ‘

Anybody else feeling a bit peaky now???? Yesterday i was kinda dizzy,  woozy n little nauseaous.

finished my 3 days of Filgrastim but strong pains in hips n knees.  Now 4 days off....Dont think my ear thermometer is reading correctly..   all over the place..... been as low as 33.4 😲😲 then

 10 minutes later its up to 35.4.....  decided to stick with the oral thermometer....  this morning it was 36.7....    

bloods at hospital tomorrow then Paclitaxel on friday... treatment 5 of 12....at least i can now say i finish nxt month...(August).

moan over...  hows everyone else doing ?

Alvilajo... using the picc for the first time tday for your treatment ?? Xxxx


 

Member

Re: June 2019 chemo starters

 

Picture please....πŸ‘

Anybody else feeling a bit peaky now???? Yesterday i was kinda dizzy,  woozy n little nauseaous.

finished my 3 days of Filgrastim but strong pains in hips n knees.  Now 4 days off....Dont think my ear thermometer is reading correctly..   all over the place..... been as low as 33.4 😲😲 then

 10 minutes later its up to 35.4.....  decided to stick with the oral thermometer....  this morning it was 36.7....    

bloods at hospital tomorrow then Paclitaxel on friday... treatment 5 of 12....at least i can now say i finish nxt month...(August).

moan over...  hows everyone else doing ?

Alvilajo... using the picc for the first time tday for your treatment ?? Xxxx

Member

Re: June 2019 chemo starters

Hi chicken 81

my mum looked on line for this idea. soft stretchy t shirt, cut across under arms and your left with a snood shape, put over front of forehead, twist behind head and bring remaining back over. It actually looks good, I’ve got a navy and white stripy one xxx

Member

Re: June 2019 chemo starters

Thanks! 

Felicidad, I told only about ten people before I left, then asked for everyone to be hold once I'd gone. 

Sane reason, plus I found acting like 'normal' helped me keep it together.

I'm signed off on sick as a teacher I cannot work in a school during treatment, too risky. 

Kinda a bit worried about how to look after my new bald head after tomorrow, so any tips please. 

As you know I've a wig, but might buy something for the house? 

Something easy to pop on? 

Don't want to scare my little boy! 

Although he says he's OK, having a baldy mam isn't what a child wants. 

Member

Re: June 2019 chemo starters

Ruby - I hope your new regime will give you not such a hard time. 

 

Hope62 - I am on day 12 after first cycle of EC and except days 4 and 5 where I was quite tired, I hope I am on the way up now until next session. Injections gave me some side effects, like a chesty cough, sore throat and a bit of a temperature. I am glad you are finding yourself well.

 

Alvilajo - you look gorgeous and that color suits you!

 

Zed51 - Happy to know you had a normal week and you are making the most of them.

 

Chicken81 - You are definitely in charge!

 

I've managed to clock some hours at work these days, not too many though but it's good for me to have that routine for as long as I can keep it. Most of my colleagues at work only know I will be dipping in and out due to some health issues. I am not hiding it however didn't want to make a public announcement because I don't want to cope with lots of "poor you" looks and " be strong" messages at once - I am grateful for people's concerns and help but I just want to let people know gradually , does it make sense?

 

Oh, and one lovely soul has given me lots of rhubarb from her garden , so I am looking for recipes to use it. 

 

Hope you all had a lovely evening. Big hugs xx