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December 2019 Chemo Starters

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Re: December 2019 Chemo Starters

Thanks for the feeling good wishes! Hope you recover from last night X

I know, it’s so confusing re drugs. I have to read and re-read all the packets multiple times to work out what drug happens when. Then I do it all again and relearn it at lunchtime! Doesn’t seem to stick. Better go and get that injection over and done with 🙄. 
wishing everyone a good day X

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Re: December 2019 Chemo Starters

Morning everyone!

 

What's the reason for the steroids? Is it to help manage the side effects or make the chemo more effective? Just wondering if I'm missing out on something? Thanks

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Re: December 2019 Chemo Starters

Thanks rizzer. I have just realised that I only took one steroid pill instead of two last night so that wouldn't have helped Smiley LOL

It sounds like IV steroids could be the way to go. I wonder what the dose is. They gave me 8mg of tablets pre chemo yesreday and then I have 4mg x 2 daily for 3 days, plus 3 x10mg domperidone for 5 days (plus as required) and 8mg ondansetron x2 daily. It's hard to remember what to take when/ with food/ without!!!

I have injections days 4 to 10 300 icrograms Filgrastim (Zarzio). They must be from the same family. I had a quick look at the BNF online and they are given for the same reasons, just different doses.

Hoping the feeling good continues x

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Re: December 2019 Chemo Starters

Sorry mrss1968 I see you’re taking filgrastim, so I’m taking same sort of stuff I imagine based on the name 

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Re: December 2019 Chemo Starters

Hey mrss1968, sorry to hear you had a bad night. It was me who has the IV steroids before and after the syringey-bit of EC. At least that’s my understanding! Yeah, I had a bit of nausea this time and couldn’t sleep although v v tired. Feel pretty good today tho’ despite limited sleep and had breakfast which never tasted so good! The upside of the steroids, I guess. Got to inject myself this morning. I’ve got something called lipegfilgrastim. Is that what everyone else has to help get their bloods re-booted? X

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Re: December 2019 Chemo Starters

Yes welcome back Fluffball. It must be so frustrating having chemo postponed. Would it be worth asking if the preloaded syringes would me more effective? The one I'm on is called Filgrastim, but my neutrophils and WBC are still at the low end of normal

normal so they are definitely taking a battering from the chemo.

Madcatlady I had the worst pain at the last one (day 7), but it just goes to show we all respond differently. I had day 2 EC yesterday morning and by the evening felt like I had been hit by a bus and awful nausea. I don't have IV steroids like ?Aurora (sorry cant remember who it was, I think one of our French ladies, but do have oral steroids.

I ended up taking a Temazepam last night as I was tossing and turning (despite feeling shattered). Might be worth asking for a prescription for sleeping pills for those who get the steroid induced insomnia, despite taking the last one at lunchtime. 

Hang in there ladies, it's a rough ride we are on, but we can do this! X

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Re: December 2019 Chemo Starters

No need to apologise for taking time out fluffball. You’re going through so much. I have been thinking about how you were doing, so it’s very good to hear from you. I hope you can get some clearer sense of what the ‘plan’ is on Tuesday. (I use the word plan aware that they have an annoying habit of changing) It must be a very unwelcome frustration that the old neutrophils won’t do the necessary and are delaying the next round. Sending you lots of love Xx

 

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Re: December 2019 Chemo Starters

Good morning ladies, and welcome to those I haven't yet "met"!

 

Sorry I've not been around, I'm not having much fun with things at present and needed some time out from a support forum...

 

Regards the injections, I was put on lenograstim  which wasn't a pre filled syringe, you had to make the mix up yourself with a larger bore needle, then fill the syringe, swap needles and then inject. I believe a far cheaper option (😁)  and I was told to take antihistamines about an hour before each injection to combat side effects - and I have to say, I've had none...

 

However, I am wondering now if its because it maybe just isn't working for me... 

I was supposed to have my second chemo last Thursday, it was delayed due to low neutrophils, but then this week, although my levels were nearly at minimum on Tuesday, Thursday comes and they're too low again! So.... I will be two weeks late if it happens next week, which as I say, makes me wonder if the lenograstim did its job anyway... 😔

 

Seeing the oncologist Tuesday, hopefully get some answers. 

 

For me, it was day 6-10 which were the worst, until then I'd had no side effects at all, then all I had was a few days of being a little extra tired...

I've suffered recently with bloating and trapped wind, which is annoying and being dealt with, but to be honest I thought I was sailing through, so it doesn't always have to be tough, ut seems everyone is going through very uniquely individual experiences with it all. 

 

So... Hang in there ladies.. We've started now and the finish line is a little clearer... 

 

Big hugs to everyone! 

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Re: December 2019 Chemo Starters

Hi Aurore2000

Mine stopped on Tuesday and it was the two days after the first injection that seemed the most painful, but then it got better until by day seven I wasn't as tired or in so much pain. 

Anything that helps good cells grow in the middle of all this battering gets my vote but I wish it didn't hurt so much. Maybe this is a bit like what my mum used to call 'growing pains'...!

xx

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Re: December 2019 Chemo Starters

Ah, rizzer, you are clearly a woman after my own heart I'm vegetarian so it's the chips for me, but oh the smell...and the salt...stop it now!

You're right: got to be the coast. But I lived in North London for two years and I would agree with your husband that there were some good chippies there. I remember one in Palmers Green I used to go to and my first local in Oakwood was a cracker. I'm a Peak District gal so you have to watch the touristy prices, much like at the coast.

Fingers crossed that the abstinence helps with the SEs...and make sure you make up for it soon!! 

xx

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Re: December 2019 Chemo Starters

Yep oncologist said the same about bone marrow but of god it hurts - glad it worked tho as bloods came up and had good numbers ! Staring tonight and not looking forward to it 

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Re: December 2019 Chemo Starters

My experience exactly the same! My consultant said the bone pain was new bone marrow growing had 2nd lot today so waiting for the sea sicky feeling to kick in but so far so good 😊 good luck everyone x

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Re: December 2019 Chemo Starters

Sorry Frenchie you feel this way. I am on AC (round 2 yesterday)x4 every 2 weeks then 12 weekly taxiplacel with carboplatin every 3 weeks. I am triple negative so they throw everything at us. So far side effects have been manageable, losing my hair despite cold capping, feeling tired, had a couple of bad days after finishing steroids but more linked to mental well-being, lack of appetite and horrible oral thrush during the first cycle. Injections give me bad bone pains and my wbc and neuts were quite low at some points and there were worried about potential infections but with additional injections number came up!

i am struggling with anxiety and lack of sleep and trying to work around this. 

I know it sucks to feel this way when you have always been proactive and busy but 1 day at the time. Some days I have felt lightheaded and I went out for a walk and always felt better for it so try to fit that if you can in your routine.

i hope you feel better soon, you’ll get through this !!!!

wishing a good evening to all the ladies here 

I really like Lille: the braderie, the Villa Cavrois etc 

aurore

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Re: December 2019 Chemo Starters

It’s hard to know where you stand, frenchie, isn’t it, because we all seem to be on different drugs, cycle lengths etc and - no doubt - different doses of everything! It’s understandable to hate feeling rubbish...We’re here for you ❤️. You’ll get past this bit. Keep going. I’m on 4 EC then 4 paclitaxel every 2 weeks. Will be interested to see how we fare with the SEs from different cycle lengths of the taxol, with those of us who are having it X

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Re: December 2019 Chemo Starters

Thanks ladies.

 

Yes, I am in France. I'm having 3 lots of EC followed by 12 weekly doses of taxol. So far I've mainly had extreme tiredness and today headaches and nausea. Also very thirsty despite drinking quite a lot.

 

Hhmm well I don't know if there were any steroids during the chemo but I've not got any to take at home. I've got anti-sickness stuff and then 4 injections next week to stimulate white blood cells.

Thanks for your support, I hate feeling rubbish! Xx

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Re: December 2019 Chemo Starters

Hey frenchie, good to hear from you. I’m sorry to hear you’ve had a hard time tho’.

 

As we know, everyone has different experiences (and it’s not like I’m a pro at this, having only just had 2nd today!) but I only felt bad days 5/6, when steroids stopped. I think you’re having yours in France?  Is that right?

 

The EC I have includes some intravenous steroids before and after the main syringes of actual chemo meds, so perhaps yours does too?

 

Then it’s pills to take home, some of which are straight anti-sickness, some steroids too on top. If it’s at all helpful, in my case they’re called Arepitant (anti-sickness) and Dexamethosone (steroids). These stop on day 3 and day 4 respectively. 


Are you taking any pills when you come home? 

 

If the feeling bad is mainly tiredness, this should ease up I guess as the cycle progresses. If you are taking extra pills that are steroids, you might experience a down at some point after they stop too. But, as I say, this is different for everyone and, I’m sure other ladies experience precisely the reverse of what I’ve just said..

 

At the risk of saying the wrong thing, I’d say that most people (?) seem to feel a lot better after the first couple of weeks, and some a fair bit before that too. In my case I felt out of the woods by about day 8 I’d say, and v tired day 1 and 2. I imagine how much you spring back, might change the more cycles we do...

 

Sending you a hug. This isn’t easy. We’re here whatever you want to share, and I’m sure someone else will be along soon with their experiences. Take care of yourself love X

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Re: December 2019 Chemo Starters

Thanks frenchie77. In total I'm having 3 x EC, then 10 weekly paclitaxel. How about you?

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Re: December 2019 Chemo Starters

Thank you. Hope round 2 goes well for you. How many are you having all together? Xx

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Re: December 2019 Chemo Starters

Hi frenchie77

 

I have had round 2 of EC today. I didn't have too many side effects on round one. Mostly fatigue and just feeling a bit rough. I had headaches and some bone pain with the injections.

 

The last 8 days of the 3 week cycle I felt completely normal again. My hair started falling out a week ago. I didn't use the cold cap.

 

But everyone is different. Good luck with it. Be kind to yourself and ride it out. Its barbaric treatment, but the best there is for now x

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Re: December 2019 Chemo Starters

Hello!

 

Hope you don't mind me popping back on the December thread. I had my first round of EC on Tuesday afternoon. I was just wondering if others on the same treatment could let me know when you started to feel a bit better. I'm not on steroids as far as I know. I was not too bad but today has been hard. Just wondering what I should expect tomorrow?? Thanks

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Re: December 2019 Chemo Starters

God love you madcatlady, for saying that about the f&c 😂. It took Herculean effort. I take it you are a fan of a good fish and chips too? Or maybe just the chips?! I’m always on the quest for top quality ones. I’m going to put something contentious out there, so apologies in advance to anyone who shares this sentiment... but my husband (who’s from north London) claims London does good fish and chips, but I’ve never tasted any there! He says Toffs in Muswell Hill is fab. I’m from Norfolk originally and I feel you need to get near the coast to really taste excellent ones. But then I would say that wouldn’t I. there you go...Either way, it’s food of the gods as far as I’m concerned! Mmmmmn perhaps I’m a bit pumped up on steroids and food fixated 🤔 

 

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Re: December 2019 Chemo Starters

Hi Adelemck 

Welcome to the group, and well done for today.

xx

 

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Re: December 2019 Chemo Starters

Rizzer, you are awesome for saying no to fish and chips. Any woman who can turn away from a plate of chips is definitely going to kick cancer up the rear!!

xx

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Re: December 2019 Chemo Starters

Sorry MrsS1968, I meant to wish you well too.

xx

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Re: December 2019 Chemo Starters

Just realised that doesn’t add up 😂. Should have said 36 before and 24 after...

I stopped food Tuesday night and won’t eat again till Friday a.m. Anyway, hopefully, you get what I mean! 

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Re: December 2019 Chemo Starters

Thanks Aurore, yeah it’s been ok. Apart from steroid induced madness on day 5/6 I think I’ve got off pretty lightly. No idea and no way of knowing if that’s the fasting, or something else, or would have happened anyway....but obviously now I can’t not do it!

 

I do 60hrs (48 before/24hrs after) and I’ve not found it hard or tiring particularly. I could do with a bit of weight loss after Xmas, so although I haven’t weighed myself, I feel like I’ve given my digestion a bit of a rest. That said, I did have to endure sitting at dinner with everyone else eating fish and chips last night, while I drank green tea. I totally LOVE fish and chips, so that wasn’t much fun, but a good exercise in self-restraint! 

 

Did you fast at all? I remember you saying you might give it a whirl! X 

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Re: December 2019 Chemo Starters

Hi Rizzer 

 

how have you found the fasting going? Not too difficult, tiring? Any weight loss?

thanks

well done for today 

Aurore

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Re: December 2019 Chemo Starters

Welcome adelemck x Just had my 2nd too. Fingers crossed for you on the SEs.... stay in touch. 

Sorry about the 2nd mix-up mrss1968! Blimey, I’ve checked again and I think it was debelina?! sorry! How are you doing my love? 😘
I’m home now and still fasting, so although I’d love to eat tonnes of food, I’m not going to until tomorrow. I fasted first cycle, so now feel that I have to do it every time, just in case I get awful SEs.

 

Lots of love to all X

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Re: December 2019 Chemo Starters

Yes I am cold capping but like I said I am not sure it’s working for me unfortunately. I hope you will have more success 

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Re: December 2019 Chemo Starters

Hi Adelemck

Welcome to the group! I had a mini meltdown this morning, feeling frustrated about going back to have more poison pumped into me, making me feel awful again, but managed to keep the end goal in sight and got on with it too!

I had to Google baker boy! Nice! I got a pixi cut as mine is falling out loads. I don't think I will be going out without headwear in a week at the rate it's going.

Good luck with it all! x

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Re: December 2019 Chemo Starters

Hello everyone, I'm new to this group but also have my second Chemo today had a major meltdown 2 days ago but he been reassured by finally meeting my oncologist - so have my big girl pants on today and am feeling positive also treated my self to a baker boy today as hair already almost gone (I have lost patches of my hair before so it wasn't a suprise) good luck everyone x

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Re: December 2019 Chemo Starters

Lynlucys I was the same this morning- dreading it. Done now.

Aurore my hair is falling out fast too.

Thinking of everyone and hoping for minimal side effects for us all x

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Re: December 2019 Chemo Starters

Hi lynlucys, Aurore2000 and Rizzer

Thinking of you ladies this morning and sending lots of love.

You might smile at this...the little strip on my handbag strap broke earlier. (Same idea as the bit of leather that you slide your watch strap into.)

Guess what I used as a replacement? A hair bobble. Well, I figured I wouldn't need them for a while so they may as well be used for other things!! 🤣🤣 

xx

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Re: December 2019 Chemo Starters

Aurore2000 Are you cold capping? 
congrats on number 2 down. I can’t wait to say that at the end of the day! 

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Re: December 2019 Chemo Starters

Good luck to all to all the ladies having their treatment today - a few of you I think ! 
i did my number 2 yesterday and was quite worried, feel a bit hangover today but okay. Hair is falling fast though ! 
have a good day 

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Re: December 2019 Chemo Starters

I’ll be off to round two of chemo in a few hours. Just can’t sleep right now. Steroids and nerves got me. I live in the US so it’s 2:47am right now. But I’m ready and hoping round two is similar to round 1. Half way after today! 
Thinking of you Rizzer and MrsS1968. Let me know how it went! Much love and healing heading your way ladies! Xxx

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Re: December 2019 Chemo Starters

Sorry that should say Rizzer, not Dizee- autocorrect on the phone!!!!

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Re: December 2019 Chemo Starters

Good luck to you today dizzee. For some reason I'm dreading it today.

 

I think it must have been someone else's post about hair halo, reiki etc. I'm finding it tricky to remember who posted what in order to reply directly. Once you start posting you csnt look through previous posts (on my phone, at least).

 

Madcatlady glad the vaseline is helping.

 

Thinking of you all.

 

Fiona

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Re: December 2019 Chemo Starters

Hi all. Off for second cycle this morning. Glad to hear you’ve emerged from the first week (and a bit) Lady34. Thinking of you Lynlucys and mrss1968 today too 😘 oh, and I’m really sorry, I missed your reply about the hair halo mrss1968! Just saw the pic now. Looks great. I hope the reiki went well. acupuncture was a bit strange, and went to bed at 6.30 last night v tired. 
Lots of love to you all X

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Re: December 2019 Chemo Starters

Thanks livers and MrsS1968.

I'm glad I'm not the only one. Yep, one minute running and then dry sums it up well.

I've slapped vaseline on and it feels better already. It was recommended for dry lips at my chemo appt.

Lady34, glad you're okay. Day 12 and you're over halfway through this cycle.

xx

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Re: December 2019 Chemo Starters

Evening all

Had a bit of the dry nose too but doing ok for day 12. Felt human again from day 10 probably because caught up on not sleeping days 1-5. 

 

Been taking laxitive sickness tab and paracetamol mornings and resting as much as possible. 

 

All the best best for all with appointments tests treatments this week. 

🍀🌿🍀

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Re: December 2019 Chemo Starters

Hi madcatlady

 

Not sure if I read it or imagined it that rubbing Vaseline inside your nostrils might help.

 

Might be worth a go in the meantime and can't cause any harm? X

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Re: December 2019 Chemo Starters

My nose seems to alternate between dripping tap or totally dry so you can feel the air passing through your nostrils on every breath!  Also assumed it is due to lack of nasal hair!

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Re: December 2019 Chemo Starters

Thanks Hodo, I'll ask about naseptin next week at my pre-chemo appt. I do have rhinitis so am often a bit blocked and/or runny-nosed, so look like Rudolph more often than I'd like...

Yep, a real gift all right!!

xx

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Re: December 2019 Chemo Starters

Hi madcatlady,

I know that nose sores can be a side effect of chemo, I've seen it mentioned on a Facebook group I am on.  I also have this from a previous illness and my Gp prescribed naseptin which is really good so maybe mention it if it gets any worse. 

Blinking cancer eh, the gift that keeps on giving 🙈 

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Re: December 2019 Chemo Starters

Evening all.

Hodo71, hope that your appointment went well, and Debelina that you are managing after your treatment.

Apologies to anyone eating their tea, but I wondered, has anyone else got a dripping nose? It's like a tap running, especially if bending forward. I've read it's because nasal hairs drop out and so there's nothing to catch the gunk. It's very irritating as my nose is getting sore and a bit crusty. (Nice.)

And talking of hair loss, there's something uniquely unfair about still having bristly legs whilst eyelashes and nasal hair (useful things) and what my friend delightfully calls the 'lady garden' (maybe not useful, but I'd rather not look like a plucked chicken) are disappearing fast...😆

xx

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Re: December 2019 Chemo Starters

Hello! 

A few of us having injections today i think! 

Good luck to us and for the others I wish you a good day with not too much side effects 

aurore

x

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Re: December 2019 Chemo Starters

Hello ladies,

Thank you for your explanation of the injections x

Much love to you all 

Debbie x

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Re: December 2019 Chemo Starters

Hi Aurore,

 

Loads of good wishes and hugs to you, I hope your bloods get back to normal ASAP.

I was always given 8 injections from D3-D10.

God, I just cannot describe the lightening symmetrical pain I got with them, never experienced anything like it. I am so glad that EC cycles are finished for me.

Good luck,

B4

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Re: December 2019 Chemo Starters

Hi B4,

I'm ok as not lost my eyebrows yet but have an eyebrow tint which I use anyway and stays on all day so will use that when I need it. I tried loads of wigs but just couldn't get on with them.  I've had short hair most of my life so they just felt really alien and itchy too.  I'm sure they get easier the more you wear them and I've seen some people wearing long ones and they look great. 

X