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June 2019 chemo starters

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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

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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

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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 

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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. 

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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!

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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 😖

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

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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 🤷‍♀️🤷‍♀️

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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

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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 🤪🤪that’s right I did through chemo 🤪🤪I think getting hospitalised for 6 days after 1st chemo made me very cautious, nothing wrong with that, we all navigate it our own way 👍💕💕Shi xx

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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 👍👍

do you take ur temp. everyday ??


 

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Re: June 2019 chemo starters

Another session out the way 👍👍

do you take ur temp. everyday ??

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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....👍

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


 

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Re: June 2019 chemo starters

 

Picture please....👍

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

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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

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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. 

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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

 

 

 

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Re: June 2019 chemo starters

💪💪💪💪chicken got your Mrs I’m in charge pants on 👍think you’ll find it liberating 👍I know I did 💕💕Shi xx

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Re: June 2019 chemo starters

I've decided and booked in a shave! 

I've cancelled my cut n colour for Friday. 

I simply cannot go through losing the amount of hair I'm losing each day. 

It makes me sick 🤮 each morning. 

Washing this morning was the worst as the old hair that has fallen out gets tangled in normal attached hair and the amount that pulls out, urgghhh makes me gag. 

 

I'll get my wig out and cancel cold cap sessions from now on. 

 

I'm going bald! 

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Re: June 2019 chemo starters


@Hope62 wrote:

Hi Ladies  

Hope you are all enjoying the good weather today, I had my first session on EC last Friday and apart from being de-hydrated (need to up the water intake)  I seem to be okay so far. Finished the tablets they gave me; just got a few more days of injections.

I did the cold cap and found that I coped alright with it. No sign of hair loss, so fingers crossed.

Love seeing the pictures  Alvilaio 

Sorry to hear that you are having such a bad time  rubythursday

 Hope it all works out for you soon xxx



Hi hope62

glad your coping well with ec, my 2nd ones tomorrow.

Vic x

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Re: June 2019 chemo starters

Hi Ladies  

Hope you are all enjoying the good weather today, I had my first session on EC last Friday and apart from being de-hydrated (need to up the water intake)  I seem to be okay so far. Finished the tablets they gave me; just got a few more days of injections.

I did the cold cap and found that I coped alright with it. No sign of hair loss, so fingers crossed.

Love seeing the pictures  Alvilaio 

Sorry to hear that you are having such a bad time  rubythursday

 Hope it all works out for you soon xxx

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Re: June 2019 chemo starters


Thanks Shi - that’s exactly what happened to me with paclitaxel so I am hoping not with the next one, they are used to me now so have the injections ready to go 😊 got to keep trying these things, good to hear some people haven’t reacted to Abraxane. Ruby x
@Shi wrote:

Ruby, mishy18 got on fine with abraxane after reaction to t 👍I wimped out and went back to fec after reaction to 2nd t. It doesn’t happen to everyone but if you suddenly feel hot and your chest feels tight when you breathe in while the are administering the chemo let them know immediately they will stop it and give you bag of antihistamines to go through ❤️Hope this helps 💕💕Shi xx


 

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Re: June 2019 chemo starters

Ruby, mishy18 got on fine with abraxane after reaction to t 👍I wimped out and went back to fec after reaction to 2nd t. It doesn’t happen to everyone but if you suddenly feel hot and your chest feels tight when you breathe in while the are administering the chemo let them know immediately they will stop it and give you bag of antihistamines to go through ❤️Hope this helps 💕💕Shi xx

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Re: June 2019 chemo starters


Hiya,

yes it was anaphylactic shock, could still happen again with the next one as well he thinks it might possibly be because I have previously had docetaxol as part of fec t and I am therefore possibly just hyper sensitive to the taxols!

 

my cycle will be one chemo every three weeks, he described it as a pretty awful week a somewhat better one and then an almost normal week then do it all again! That pretty much correlated with my experience of fec t tbh and that was doable most of the time.

 

thank you for your kind words Minimad 😊

@mini mad wrote:

Hey Ruby,

 

good to hear that they are taking you off Paclitaxel,  must be a big relief for you after your awful reactions....whas it anaphalactic shock ???  

So is it one day every 3 weeks for you eventually ??

we just dont know how these drugs are gonna effect us.... kinda just a waiting game to see what/if any side effects pop up...

keep us updated and chin up lovely.

tc xx 💖💖


 

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Re: June 2019 chemo starters

Hey Ruby,

 

good to hear that they are taking you off Paclitaxel,  must be a big relief for you after your awful reactions....whas it anaphalactic shock ???  

So is it one day every 3 weeks for you eventually ??

we just dont know how these drugs are gonna effect us.... kinda just a waiting game to see what/if any side effects pop up...

keep us updated and chin up lovely.

tc xx 💖💖

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Re: June 2019 chemo starters

Hey Ladies,

 

my chemo paclitaxel is being stopped due to the serious reactions I have had, they are trying to get funding for me to have Abraxane which is another type of taxol without the solvent base. I will have this in combination with carboplatin on a 3 week cycle so will definitely lose my hair not just maybe. Will be a week or two as it’s not one they use often they have to sort out the money and a personalised prescription. 

 

Frustrated at the delay but at least I have a plan I guess.

 

Ruby xx

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Re: June 2019 chemo starters

Alvilajo loving the look. 

I’m having my second dose FEC Thursday. So it’s almost three weeks since my first dose. I had cold cap & no hair loss yet but tingly scalp. I had hair chopped into short style so I just wash and comb with fingers. Not expecting it to stay but 🤞. Had almost a week of relative normality so I’m really lucky. Going oncologist this pm for appointment before Thursday. Not looking forward to returning to fuzzy feeling head & tiredness!!  Hope everyone ok today x

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Re: June 2019 chemo starters

Looking fab alvilago, just a reminder everyone these forums are open to the whole world and anyone can look at them, please keep safe if you tell each other your locations do it by a pm or just generalise I.e north, south, etc 💕💕Shi xx

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Re: June 2019 chemo starters

When u click reply, above the box you write in there’s a picture of a camera, click it and it says upload pic cxx


@mini mad wrote:

Alvilajo,

 

how do i post a picture on here ??

not too much into this modern technology  😆😆😆   Showing my age....


 

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Re: June 2019 chemo starters

I bought two from Levi, and I’m making a couple. Amazon eBay xxxx


@Debi2 wrote:

Hi 

 

Alvilajo that looks really nice, i am going to go on amazon and have a look for one.  Where did you get yours? 

 

Debi


 

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Re: June 2019 chemo starters

Hi 

 

Alvilajo that looks really nice, i am going to go on amazon and have a look for one.  Where did you get yours? 

 

Debi

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Re: June 2019 chemo starters

Alvilajo,

 

how do i post a picture on here ??

not too much into this modern technology  😆😆😆   Showing my age....

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Re: June 2019 chemo starters

It sooo suits you.....😘😘

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Re: June 2019 chemo starters

Thank you I was surprised I liked it xxx


@rubythursday wrote:

You look fabulous xxx
@Alvilajo wrote:

 

BD59B368-D916-4A78-8C18-6E8275031C1D.jpeg

 


 


 

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Re: June 2019 chemo starters


You look fabulous xxx
@Alvilajo wrote:

 

BD59B368-D916-4A78-8C18-6E8275031C1D.jpeg

 


 

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Re: June 2019 chemo starters

 

BD59B368-D916-4A78-8C18-6E8275031C1D.jpeg

 

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Re: June 2019 chemo starters

Done it !!Done it !!

 

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Re: June 2019 chemo starters

Thanks everyone for your comments and suggestions re my prickly hedgehog head.

Louise x

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Re: June 2019 chemo starters

Hello Ladies,

 

lots going on with afternoon teas and running, well done to you all, marvelous work!

 

re hair, I have some light shedding but nowhere near enough yet to brave the shave. I do recall last time I shaved it and then spent a couple of days pulling out the short bits onto kitchen towel! It does feel strange, but if it’s going to go it will all come out in time so no stubble.

 

i have had a lovely, normal weekend, no horrible side effects - have done some gardening, drank some wine with my lovely hubby (don’t judge me!) and been to our local show today for a picnic and our Dalmatian won two prizes in the novelty dog show!

 

seeing oncologist tomorrow, assuming he is not still sick so will know more then!

 

think I might pop into work to say hi, they will probably have  heart attacks or think I am a ghost I have been off work that long!

 

enjoy what’s left of the weekend. 

Ruby xxx

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Re: June 2019 chemo starters

Oh dear poor thing,  when I had my head shaved it was a little prickly for a day or so but very quickly went to a smooth head.. Hang in there.. Before you know it youll be findings the return of the prickles a very exciting time. Xx

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Re: June 2019 chemo starters

Oh dear...Just been thinking that maybe after you had your head clipped,  perhaps mentioned you wanted it shaved for a smooth head....

still sorry it didnt turn out the way you hoped.  Maybe needs to just grow a little now.

tc 💖

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Re: June 2019 chemo starters

Hi about the shave 💪💪😘😘well done for taking control, it will be a bit hedgehog for a little while, I found having a silk pillowcase and a chillax pillow helped during this stage and when had a complete Chucky egg head 😘 I also had a scalp care kit from beauty despite cancer too which helped care for scalp during this phase too ❤️Your hair will grow back once you are on t 😘😘hope this helps 💕💕Shi xx

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Re: June 2019 chemo starters

Hi MiniMad

The stylist didnt mention the size of the saver.  I didnt think to ask.  I did tell her politely that I wasnt happy with it, so she went over it again, but it didnt make much difference. It feels like a weeks worth of stubble growth.  I just thought it would be sleek and smooth.  Maybe I was expecting too much and this is just the way it goes.

Louise x 

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Re: June 2019 chemo starters

Hey chicken if your running on the race for life you certainly deserve to raise a lot . I’m 3 days short of next chemo and I’m going to shave my head today or tomoz as coming out more each day, if I run my fingers through my hair there’s s fair bit in my hands. I didn’t use cold cap xxxx


@Chicken81 wrote:

Louise, never heard of the berries or juice sorry.

Alvilajo, amazing news on your tea party, hope my race for Life can raise anywhere close to that as that's amazing! 

Mrs Velo, I think I have those drugs in my 5,6,7 and 8th cycles, so I'm relieved to hear its not too bad, as EC deffo wipes me out. 

 

Ladies.... 

I'd like to ask about hair loss. 

I've done the paxman cold cap, but each day I'm losing hair. Like a lot. If I brush, the hair just falls out and I cannot wear it down due to shredding, I wear it in little bunches. 

Is this what you experienced when not using cold cap? Just wondering if I'm likely to lose it all. Nurses said they think it'll just thin but I'm just asking you ladies what's happening with you. 

 

I get steroids on chemo day, then for the day after. 

I am getting flushed cheeks and I'm sure they're making me have a double chin, or what was a small double chin to get pouffier. 

Just wondering as I'm watching what I eat as I do worry about putting on weight 

 

Let me know, 

Claire 

Aka chicken 🙂 

 


 

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Re: June 2019 chemo startersj

I’ve yet to check in with my mum but I’m good lol. Hope you lovely ladies are feeling well and enjoying the weekend. We’ve got the red arrows today  so will watch them from the garden xxx

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Re: June 2019 chemo starters

Hi Lucylump,

I hope Thursday goes really well, and I am really hoping my post has calmed any fears.  I know I was scared, and expecting allsorts of instant ill effects, don't worry, it almost definitely won't be as bad as you think. xx. I am away next week, but will look out for how you got on when I get back.  Take care. xx. Hydrate, hydrate, hydrate. xx

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Re: June 2019 chemo starters

Ouch.?.  That must he so painful.

do you know what number clippers they used ?

i believe number 1 is the smoothest/shortest..

i am also shedding big time n having to wear scarves constantly.

i still have bob length hair around the sides, top although hair line at front has receded, and length from top to bottom at the back...  dont know when i'll be brave enough to do the " buzz "...

let me know how things go.

tc .. big Hugs  💖

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Re: June 2019 chemo starters

Head Shave Advice Please

 

Went to hairdressers yesterday - the place where I got my wig.  As there was hardly any hair left - very very short, lots of bald patches, but still soft - I asked to have it shaved.

 

The result wasnt what I was expecting.  I thought it would be very smooth, no hair, nothing to feel.

 

However although you can't  see any hair, you can certainly feel it.  It feels like a hedgehog.  It is driving me mad.  I can even feel it through my headscarf when I touch my head.  When I lay down to sleep I can feel them digging into my head.

 

Is this normal?  Is this what it feels like after having it shaved.  I really wish I hadnt had it done now.

 

Louise 

 
 
 
 
 
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Re: June 2019 chemo starters

Hi lucy

i’m due to have 3 x  EC and 3 x Docetaxol (think that’s how it’s spelt) I’m like you hoping it all goes to plan but know that sometimes doesn’t happen, my last one should be 9th October then 20 sessions of radiotherapy. 

We should have been going to turkey in August but had to cancel so now booked to go to Florida on Xmas eve just praying we can go the kids are so excited just be something nice to finish a s**t year. Xxx

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Re: June 2019 chemo starters

Hi NicolaJ, I am having Fec-2 (I think!). Really wanting to get on with it. Totally agree the sooner we start the sooner it's over. I realise it doesn't all go to plan but have worked out that if it does November should be better. Unusual for me to say this but roll on Christmas! Xx

 

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Re: June 2019 chemo starters

Louise, never heard of the berries or juice sorry.

Alvilajo, amazing news on your tea party, hope my race for Life can raise anywhere close to that as that's amazing! 

Mrs Velo, I think I have those drugs in my 5,6,7 and 8th cycles, so I'm relieved to hear its not too bad, as EC deffo wipes me out. 

 

Ladies.... 

I'd like to ask about hair loss. 

I've done the paxman cold cap, but each day I'm losing hair. Like a lot. If I brush, the hair just falls out and I cannot wear it down due to shredding, I wear it in little bunches. 

Is this what you experienced when not using cold cap? Just wondering if I'm likely to lose it all. Nurses said they think it'll just thin but I'm just asking you ladies what's happening with you. 

 

I get steroids on chemo day, then for the day after. 

I am getting flushed cheeks and I'm sure they're making me have a double chin, or what was a small double chin to get pouffier. 

Just wondering as I'm watching what I eat as I do worry about putting on weight 

 

Let me know, 

Claire 

Aka chicken 🙂