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June 2019 chemo starters

Member

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

Kip Community Champion
Community Champion

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

Member

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 💖

Shi Community Champion
Community Champion

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

Member

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 

Member

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 Smiley Happy 

 


 

Member

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

Member

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

Member

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  💖

Member

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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Member

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

Member

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

 

Member

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 Smiley Happy 

 

Member

Re: June 2019 chemo starters

Hi lucylump

I had my first chemo last weds. What type of chemo are you having I had EC?

Good luck, the sooner we start the sooner it’s over! Xx

Member

Re: June 2019 chemo starters

Fantastic, well done Alvilajo!

 

How is everyone feeling today? 

Xx

Member

Re: June 2019 chemo starters

Mrs Velo, thank you so much for your post. My first chemo is on Thursday. Xx

Member

Re: June 2019 chemo starters

Must of been 40 odd xxx


@Jencat wrote:

Well done Alvilajo, that's fantastic! Smiley Happy  How many people did you have there? You must be exhausted! xx


 

Member

Re: June 2019 chemo starters

Wow 😲😲😲   What an incredible amount .....BIG well done

tomorrw you should have a rest day and should be a tad cooler.

tc.. big hugs  💖💖

Member

Re: June 2019 chemo starters

Well done Alvilajo, that's fantastic! Smiley Happy  How many people did you have there? You must be exhausted! xx

Member

Re: June 2019 chemo starters

Tea party was fab and we all melted it was so hot. In total with just giving raffles cakes games etc we have raised a whopping £1,459 and still a bit more to come in. Chuffed as all for us lovely ladies in the long run xxxxx

Member

Re: June 2019 chemo starters

Hopng yourBreast Cancer Tea Party goes well,  youve certainly got the weather today.... just dont overdo things,  expect you have help 👍👍

let me know how treatment and picc goes nxt wednesday.

big Hugs  💖😆

Member

Re: June 2019 chemo starters

I had my first chemo yesterday (Paclitaxel & then Trastazumab (sp?)).  I am AMAZED, and happy to report that today me and hubby had a great day trip out to the Isle of Wight cycling in the sunshine (about 20 miles).  I don't want to speak too soon and am pretty sure I will be wiped out tomorrow but today I feel remakably unaffected.  If anyone is starting soon please take some comfort from this post.  I was really scared, please don't be, I hope the start of your treatment is a gentle as mine has been.  Love and hugs to you all.  xxJ. 

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

I had life Mel honey and it helped through chemo, others on oct17 thread had manuka honey and that helped too. 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

Good luck tomorrow Avilajo, 40 is a great number, I hope you have lots of help. J.

Member

Re: June 2019 chemo starters

Aronia Berries or Juice

 

Hi a friend recommended aronia berries or aronia juice to help with my immune system during chemo.

 

Just wondered if any one else eats / drinks them.

 

I asked my BC nurse and she said not to have them, but she says that to everything I ask about.  

 

I read people on here using this or that and when I ask my BCN if I could try the things I've seen others write about she always says no.

 

So, would love to hear if any one uses aronia - many thanks

Louise

Member

Re: June 2019 chemo starters

Hi mini mad

next wed is next chemo and first time with my pic line. I’ve not lost any weight 🙄. I’m busy getting everything ready for my breast cancer tea party tomoz . I think I’ve got about 40 coming


@mini mad wrote:

Hi Avilajo,

 

how you getting on with your picc line ?  Have they been able to use it yet for your chemo ?

had mine fitted yesterday afternoon,  hoping it can ge used for my double whammy session later at 2pm.    Hair is just constantly shedding now,  its everywhere,  so am wearing my scarves now day and night  😲😲

 

ive not had sickness either,  just a kinda feeling so been taking just 1 Domperidone in the morning.

got weighed when i had my review on wednesday with chemo dr. lost a little but at least im still eating ok so far....  wonder if more side effects pop up the more sessions you have 🤷‍♀️🤷‍♀️

tc ladies n enjoy the sunshine if you can... xxx💖💖💖

 

 



xxx 

Member

Re: June 2019 chemo starters

Hey Ruby,

 

sorry to hear your session had to be cancelled.   A week free of chemo hopefully will give your body a chance to rest n recuperate and with this warm weather also ... dont forget to keep the sun lotion handy and head covered 👒👒🌤🌤

my hair is shedding big time,  am wearing my scarves day and night now,  its everywhere but not ready for the ' buzz ' yet....

had picc fitted yesterday , hope it can be used this afternoon when i have my Paclitaxel and  Carboplatin double whammy.  Think we were on the same treatment plan at the same time uptil  now....    little weight loss at review on wednesday but lucky as im able to eat as normal.

do have  a supply of ginger biscuits in the cupboard ready should things change 😲😲

wondering if different se come out the more chemo you have ??

tc and hoping things settle down for you in the week ahead..  BIG HUGS 💖💖

Member

Re: June 2019 chemo starters

Hi Avilajo,

 

how you getting on with your picc line ?  Have they been able to use it yet for your chemo ?

had mine fitted yesterday afternoon,  hoping it can ge used for my double whammy session later at 2pm.    Hair is just constantly shedding now,  its everywhere,  so am wearing my scarves now day and night  😲😲

 

ive not had sickness either,  just a kinda feeling so been taking just 1 Domperidone in the morning.

got weighed when i had my review on wednesday with chemo dr. lost a little but at least im still eating ok so far....  wonder if more side effects pop up the more sessions you have 🤷‍♀️🤷‍♀️

tc ladies n enjoy the sunshine if you can... xxx💖💖💖

 

 

Member

Re: June 2019 chemo starters

Hi chicken81 (sorry don’t know your real name)

glad the 2nd time seemed better, I’m def going to see if they can change my sickness meds, I’ve felt so rotten with headache and sickness. Hope you are feeling better soon xxx

Mrsingle83 

yeah I rang the Christie hotline and they were brilliant, it’s a horrible feeling sick. I’ve only got steroids for 2 days plus injections for 7 days.

tablet wise for sickness I have ondansetron but only for 2 days, metoclopramide and now I’ve got prochlorperazine. Bit concerned about taking them all and still feeling sick but will carry on and hopefully will pass soon

 

taken care and hope everyone has the best day they can love Nic xxx

Member

Re: June 2019 chemo starters


Different chemo regimes have steroids at different times, I get iv on the day and some take home for three days with one type of chemo and just iv with the other one. I have tablet ondanesetron, it’s pretty good most of the time. I call my chemo suite for everything in hours and the oncology ward at all other times. Different hospitals do different things but we have a nurse manned hotline and they are pretty good. If what they have given you isn’t working they are there to help and will if they can! Ruby xx
@MrsIngle83 wrote:

I haven’t got any steroids to take I’m a bit confused - I have some but they said to take them on the day of my chemo. 

Ive been prescribed metoclopramide but it’s not helping. When I ended up in a&e they gave me ondansetron IV and that was amazing! 

Is it the chemo hot line I call about sorting my sickness? 

 

Hope your feeling a bit a bit better Ruby xx 


 

Member

Re: June 2019 chemo starters

I haven’t got any steroids to take I’m a bit confused - I have some but they said to take them on the day of my chemo. 

Ive been prescribed metoclopramide but it’s not helping. When I ended up in a&e they gave me ondansetron IV and that was amazing! 

Is it the chemo hot line I call about sorting my sickness? 

 

Hope your feeling a bit a bit better Ruby xx 

Member

Re: June 2019 chemo starters


Keep going back to your team, they save the good stuff for the persistent ones! There are literally loads of options for anti sickness, not sure what you have tried but personally I found ondanesetron good, domperignone rubbish and metasomething or other pretty good. We are all different though! They can also give you an injection and get those steroids down you as they will help, and might make you fancy eating something which will also help! Ginger products help a lot of people on chemo, great excuse for ginger biscuits with a cuppa! Hope you get sorted soon, it’s a horrible feeling xx
@nicolaJ wrote:

Good morning ladies

 

Ruby I’m really sorry to hear your treatment has been delayed and hope they can do it soon, must be frustrating but I suppose these things happen. Get well soon xx

I’m still feeling nauseous just can’t seem to shake it and I’ve got 3 different lots of tablets, not actually been sick since weds and temp is fine.

i am just going to try and have a slice of toast so I can have my steroids, might feel better when I’ve eaten just don’t fancy anything which is certainly not like me - I love food!

anyway take care Nic xxx


 

Member

Re: June 2019 chemo starters

Oh Ruby, you are having a time. But it's good they want to look into it to make it better next time. 

 

Marie and Nic. Yesterday I had my 2nd EC chemo. I also cold cap. My first time on cold cap, the last 30min set me off feeling sick. So this time I got anti sickness extra into my IV. But the nurse said the EC drugs are horrible so that'll be why I feel sick.

But I've got they said the top anti sickness drug as they asked about travel n morning sickness and thought I'd likely to be bad so the normally start people on the bronze tablets then move them up, but I got the gold ones. I'm guessing it's price and strength? I'm resting up in bed atm but I can check my book for the names as you might feel sickly, but not too much you suffer a lot they said. 

 

I've used the cold cap paxmo machine, I do get a headache from it, they gave me paracetamol yesterday for the pain, today I'll hold off taking one, not sure I'll deffo need it. But take them if you do need it, just remember to take temp before hand. 

Hopefully your steroids will give you the humph you need, I'm more tired the next day when they wear off as I only get them for day two. 

 

Oh... Chemo team said I'm officially strange in my effects, as pubes are normally the last thing to go and it's the first thing to go for me! Well apart from the thinning of hair too Smiley Sad

Got a hair cut booked, so I'll still go as my fringe needs a tidy up. 

 

 

Member

Re: June 2019 chemo starters


Appointment Monday assuming he is back from sick leave, otherwise it will be Thursday. Feeling a bit more human today and tbh relieved to have a week to recover and get some strength back!
@Alvilajo wrote:

Aw ruby poor you, have they given you any idea when they’ll see you next xxxx


@rubythursday wrote:

Hello ladies, my chemo for tomorrow has been postponed as I need to be reviewed by the oncologist due to the reaction I have had each time and he is off sick so my appointment cancelled 😞 now battling diarrhoea and still feeling nauseated and lousy. Tomorrow is another day ...

 

Ruby xx


 


 

Member

Re: June 2019 chemo starters

No sickness for me thankfully but I’m still malting but seem to have full head of hair, I thought it would come out quicker. Saw my oncologist yesterday he’s happy with me. Dressing in piccline changed and plaster took bit of my skin off, I wondered why it was stinging so much, dreading next week as I don’t think my arm likes sticky dressings x

Member

Re: June 2019 chemo starters

Good morning ladies

 

Ruby I’m really sorry to hear your treatment has been delayed and hope they can do it soon, must be frustrating but I suppose these things happen. Get well soon xx

I’m still feeling nauseous just can’t seem to shake it and I’ve got 3 different lots of tablets, not actually been sick since weds and temp is fine.

i am just going to try and have a slice of toast so I can have my steroids, might feel better when I’ve eaten just don’t fancy anything which is certainly not like me - I love food!

anyway take care Nic xxx

Member

Re: June 2019 chemo starters

Aw ruby poor you, have they given you any idea when they’ll see you next xxxx


@rubythursday wrote:

Hello ladies, my chemo for tomorrow has been postponed as I need to be reviewed by the oncologist due to the reaction I have had each time and he is off sick so my appointment cancelled 😞 now battling diarrhoea and still feeling nauseated and lousy. Tomorrow is another day ...

 

Ruby xx


 

Member

Re: June 2019 chemo starters

Nicolaj, mrsingle83 and everyone else - how are you all doing today? Nausea under control?

 

Ruby xx

Member

Re: June 2019 chemo starters

Sorry you're feeling so poorly Ruby and hope you feel much better very soon xx

Member

Re: June 2019 chemo starters

Hello ladies, my chemo for tomorrow has been postponed as I need to be reviewed by the oncologist due to the reaction I have had each time and he is off sick so my appointment cancelled 😞 now battling diarrhoea and still feeling nauseated and lousy. Tomorrow is another day ...

 

Ruby xx

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hello NicolaJ, sorry to hear you've had a rough ride so far, Shi is right your unit will have different meds to give you so don't just put up with it.  I used to wear travel sickness bands during my Fec cycles, might be worth a try? Also keep taking the anti sickness as prescribed even if you think you feel OK. And don't worry just because u feel sick this time it doesnt mean you will every time.  As for the steroids,  I was OK on them, but constipated (used lactulose) and can disrupt your sleep.. But mostly when you come off of them you may get an emotional crash.. I always got down for a day or so when finishing them but they passed to. The injections can give you aches and pains usually legs and back.. But take paracetamol if they do... Remember to check your temperature before though.  I know thus all sounds dreadful but as you get a cycle under your belt you will work it what you need to take when and you'll be fine.

Kip

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Member

Re: June 2019 chemo starters

Thank you Shi, 

I’ve got three different lots at the minute and I’ve stopped being sick now so it’s just nausea, I feel slightly more human now.

just didn’t expect it so soon after, just had my first steroids and injections, do you normally get any side effects from these do you know? 

Thank you everyone for all your advice it’s nice to know you’re not on your own xxx

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Hi your units should try you on different meds as long as you let them know, you are not expected to struggle through, they will try on on different ones till they get combination right for you ❤️I was on akynzeo and metochloprimide which worked a treat, no sickness, kept my appetite too. Don’t be afraid to ring your teams they are there to help and support and take care if you on this journey ❤️Hope this helps 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

That’s what I’m thinking, maybe we are just unlucky and fingers crossed it passes soon. I’ve just had something to eat but feel really sick again.

what did they say at the hospital? Were you being sick or just feeling sick? 

Hope we are both feeling better soon, did you have the cold cap? I’ve got a headache and not sure if it’s from that or not eating and drinking properly 

take care xxx

Member

Re: June 2019 chemo starters

Oh goodness I hope you feel better soon Nicola. 

I ended up in a&e last night - had a temperature so rang hotline and they said to go in. Felt wonderful after all the anti sickness drugs and antibiotics kicked in. 

Just got up (didn’t get in till 6am) Feeling nauseous again though so I’m trying to eat little and often to help it and got a ginger tea. 

I don’t think I can hack feeling nauseous all the way through. 

Member

Re: June 2019 chemo starters

Hi rubythursday

That’s what I thought, most people said you start to feel a bit iffy around day 4 I’m hoping I’m getting mine out of the way early and it doesn’t last all the way through.

I’m currently on 3 different lots of anti sickness tablets, I can handle pain but feeling and being sick is not nice.

thank you and hope you are doing ok today? Xxx

Member

Re: June 2019 chemo starters

Nicola I think you have been unlucky, you might need more pre meds next time as you shouldn’t feel that awful day 1. I hope you feel better soon xx

Member

Re: June 2019 chemo starters

Good morning ladies, 

hope you are enjoying the sunshine.

 

Still feeling rubbish after my first EC treatment yet, was being sick most of the night so had to ring the Christie hotline who were amazing, they wanted me to have an injection but the out of hours Gp wouldn’t do it so ended up with some other tablets. 

Haven’t been physically sick this morning but still feel so sick and can’t stomach anything. Need to start on the steroids so will have to try something. Plus I’ve got a banging headache which I’m not sure is down to the cold cap or because I’m not drinking properly.

is this normal to feel like this straight away or is this just a blip and I’ve been unlucky?

Was supposed to be going for a meal tonight to celebrate my dads 70th birthday as it stands no chance.

Hope everyone else is having a better day

love Nic xx 

Member

Re: June 2019 chemo starters

Nicola -

ive just had first treatment today too and felt fine initially but now feel nauseous. 

Did I read your having FEC T too? 

 

Hoping an early night will sort me out x 

Member

Re: June 2019 chemo starters

I hope it passes quickly nicolaj. x


@Alvilajo wrote:

Also Nicola don’t forget to drink lots of water xxxx


@Alvilajo wrote:

Hi Nicola, I don’t think I felt sick until day 4 when i stopped the 3 anti sickness tablets they give u. Then I went on the other ones. But we’re all different. I hope you feel a bit better soon. You might have a tough day followed by a better one, rest up and don’t over do things like I do. Headache could be just stress from the day. Take care hun vic xxx