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October 2019 chemo starters

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Re: October 2019 chemo starters

The nurses told me the eyelashes are more effected on T than the eyebrows! Fingers crossed they all stay!

I thought my hair felt like it was starting to grow back so I keep checking every day lol. 

Leg hair came back but it's sort of coming and going at the moment! Very odd! 

 

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Re: October 2019 chemo starters

Thanks Jasmine that's helpful.

Interesting about the hairloss, I was expecting it to start growing back on tax, but maybe not. I still have eyebrows, so maybe I will start saying goodbye 🤣

 

Love to you and your mum xx

 

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Re: October 2019 chemo starters

Hi all,

 

my mums side effects below midway through round 3, docetaxol, herceptin and pertuzumab:

hair loss - started coming out end of cycle one 

periods stopped - she hasn’t had a period, she had pms but it just passed (she is 45, but I have seen periods stopping temporarily is a side effect) 

Achy legs and joints around day 3 

dry, flaky skin

diarrhoea for a few days at the start and end of cycle 
weird taste changes second to third day, loss of taste but this returns 

 

I hope this helps, and is not like the horror stories we see! We prepared for everything and I even got her some quesey drop sweets for nausea and she hasn’t had to have them yet! 

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Re: October 2019 chemo starters

Morning.

 

Emzlew I am Indeed half way through indeed, and I think its definitely affected my mood. My periods have been affected and I think I'm also very hormonal. That has passed this week and I have also had my h/p/ doxetaxol. So actually I'm more than half way now. I didnt realise until I walked out of chemo yesterday how frightened I had been about changing drugs. 

 

I am so much better on T so far, although it's not even 24hrs. I'm driving, managed to sort my own drugs and sort broke, and ho on the school run. No nausea! I'm ready for things to hit at the weekend, but feeling like myself has given me a massive boost emotionally!!! 

 

So Emzlew, keep on trucking lovelyone. Once this round is done, your kids get better and your cold shifts you will get back to yourself. 

 

Where are you based?

 

Wish we weren't all so spread out.

 

Clare doery to hear about your aches, I'm prepping my head for these but its good to hear you have managed on painkillers.

 

And a final thought... everyone keeps wanting me about the runs on taco... and I'm nodding publically like it sounds terrible but actually nothing sounds nicer right now!! 🤣🤣🤣🤣🤣🤣

 

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Re: October 2019 chemo starters

I hope all goes well for you emzlew. 

I had my first paclitaxel on Mon. My bones have been hurting from my hip to my ankle the last couple of days but I'm managing with painkillers so far. 

I'm keeping everything crossed for you that it goes smoothly. You deserve a break! 

I hope the little ones feel better soon too. It's so hard when they're sick too. 

I'll be 3/4 through after my next dose so I'm clinging to that thought at the moment!! 

Sending lots of love x

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Re: October 2019 chemo starters

Emzlew ❤️ Please let your team know about sore throat and poorly little ones, hope they feel better soon. T can give you runny bum, so you might have to up your carbs. If t gives you achy bones, Epsom salt baths is a tip that’s been passed down the threads that works and udderly smooth cream with extra urea from Amazon was good when skin on hands and feet dried out with the chemo. Sending 👭❤️For tomorrow 👍💕💕Shi xx

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Re: October 2019 chemo starters

Hello lovelies.  

Thank you so much for replying and being very kind. ❤️  I know we all have up and down days and that was a particularly down day!  

I had Herceptin Yesterday and stayed in for an extra 4 hours and had Pertuzumab today and only stayed for an extra hour.  All has gone well so far. 

I have T tomorrow.  I do feel a little nervous about it but they seem to think it's not as bad as the FEC.  I was sat next to a lady on my last round who had docetaxol and she had no side effects at all!! 

Fingers crossed we will be the same! 🤞🤞

 

My children are all still poorly.  All 3 little ones have an awful cough with one on antibiotics.   I'm still coughing a bit and I've developed a sore throat tonight. 🙄 

I will keep an eye on temperature but will mention it in the morning. 

 

Are you now half way purple trunks?  Maybe this is how it goes with emotions at the halfway point?  I've been very emotional lately?! 

But yes, let's hope after this week it's an easy home run!! 

 

Thank you so much everyone.  This is such a crap time so it's nice to speak to others who know how I feel..

I need to go to a social group or something I think?!  It would be nice to meet people going through the same. 

All the best to you all on this ridiculously difficult and yet empowering journey!! 🥊💪

 

x❤️x

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Re: October 2019 chemo starters

I can’t give any advice as I haven’t been through the treatment however I go with my mum each time, and she says please don’t be scared. It’s actually natural to feel anxious as her heart rate is so high she has lorazepam now to calm her heart rate down (as they know it’s due to anxiety). The worst side effect she has had is achy joints, so it does effect everyone differently and we did read many horror stories so prepared for the worst!  I’m so pleased you will finish chemo next month, and I wish you and everyone all the best with treatment. 

Xx

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Re: October 2019 chemo starters

Hey Emzlew,

 

Sorry to hear you are struggling... I'm at exactly same point. Start T and h/p tomorrow. My kids have given me a cold, and I feel like crap. I cant stop crying, not in a depressed way.. just in a really sad way. I'm really scared of doxetaxol. I feel very strongly, in a toddler tantrum footstamping kind of way, that I dont want to go in tomorrow!! 

 

I was under the understanding that I'm getting T tomorrow, and like jasmine's mum, i have to stay in for 6 hours to be monitored. Then back thursday for another 6 hours. 

 

I think it feels particularly hard because it's been going on so long, and has so long to go. Although i realised the i can now say, chemo finishes next month.. and that feels good.

 

Once we have got through this next round, I reckon we are on the home run....... 

 

😘😘😘

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Re: October 2019 chemo starters

Sorry to hear it’s so tricky atm Emzlew. Sometimes it feels all too much and emotions just need to flow. Usually a good cry helps - hope you can soon recover your good spirits. Thinking of you 

Kath

xx

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Re: October 2019 chemo starters

Hi Emzlew

 

my mum is currently going through Docetaxel, Herceptin and Pertuzumab. She has just finished her 3rd round with minimal side effects. They give her the pertuzumab first on the first day, followed by herceptin and then Docetaxol the day after (this is sometimes done separate days too, but we did have a 4 hour monitoring period after treatment to watch for any side effects, but this is only for the first round). I’m not sure if this is what you meant by if you’ll get docetaxol first but my mum takes frozen ice lollies and frozen fruit to keep the mouth ulcers at bay! Not sure if it’s working but she hasn’t had any so far. I believe docetaxol has to be given subsequent to the targeted therapies but not sure of the reason. Please let me know if you have any questions as she would be more than happy to answer.  X

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Re: October 2019 chemo starters

Emzlew,

Don’t apologise! No wonder you’re feeling fed up. As an older person I have so much respect for all that you are coping with. I can tell people to keep away with their possible germs but must admit it is very lonely in the low immune week. Good luck!

 

CureDars

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Re: October 2019 chemo starters

You've got this! You've done so well so far and this will be another hump to get over. 

I started my paclitaxel yesterday and feel s lot better than I did on EC. Less head fog, less tired so far. Spent the day doing jobs but sitting down to Netflix now for half an hour with my mum's dog that I'm babysitting today. 

I don't have experience with the other drugs  you mention so cant help you im afraid. You are going through so much so cut yourself some slack here. You're doing amazing!!! And we are always here to listen to a good moan!! Xx

 

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Re: October 2019 chemo starters

Absolutely Shi!! ❤️

 

Kath, you started this in October, regardless of what's happened since. 

We are all in this together!! 

 

Please keep in touch and let us know how you're doing? x❤️x

 

I'm starting the T part off FEC-T this week.  I'm meant to be going in tomorrow, Thurs and Fri.  Will they do the Docetaxel part first do you think? 

I'm also having Herceptin and Pertuzumab.  Does anyone have any experience of these yet?  I know everyone reacts differently but just wondering what you have found with them?  

 

My little ones have all had a nasty cough/cold and have shared it with me!! 🙄 

I'm poking myself with a thermometer every couple of hours and I seem to be doing ok so far...

I had my bloods yesterday.  Do you think the fact I have a cold will affect the results?  Will it matter that I have a cold when I go for treatment?  I wouldn't normally worry too much if treatment was delayed for a few days but when it's 3 days is have to rearrange including childcare for my 3 year old twins, school pick up for 5 year old and my autistic teen-ager is a bit of a pain!! 

It's just typical it's happening this week when it's the awkward one!! 🙄 

Sorry to have a moan..  feeling sorry for myself today and ridiculously emotional..... Aaaargh!!!! 🙈😭😱😒

 

I hope your are all doing as well as you can be?! xxx❤️xxx

 

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Re: October 2019 chemo starters

Thank you Shi, I will do.

Wishing you all a good night 

kath

x

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Re: October 2019 chemo starters

Kath, please let everyone know how you get on next week on this thread and you will be a gal of 2 chemo threads that’s all, I am sure your Oct 👭👭friends on here will agree ❤️❤️ Hope you’ve been getting lots of 🐾🐾🐾snuggles 😘💕💕Shi xx

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Re: October 2019 chemo starters

Just saw your post from yesterday Cherry. Hope it’s all clear 🤞.

i had no idea about the cough problems people are reporting. Is it specifically with FEC?

back to see breast oncologist next week to hear next stage of my plan. It may be surgery for the breast before I restart chemo as it shrank so much after the first two treatments of the one round i had ! I think that must be a good thing, but having only just had surgery i am not wild about more surgery on the same part of my body so quickly. Anyhow we do whatever we are told is most effective - what else can you do!

 I don’t really feel I qualify as an October chemo starter anymore given how quickly i got diverted onto another track. I have really appreciated the support of you lovely people and will look in on you all from time to time, but I guess I may join a new group chat when I finally get going again. Wishing you all minimum pain and maximum gain!

love

Kath

xx

 

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Re: October 2019 chemo starters

I too get a cough but was told it was a side effect.  Mine sets in around day 5 but gets better just before next chemo.   Just have to be careful it doesn't turn into a chest infection.  It hasn't so far xxx

 

Hope everyone is staying warm and well.

 

Amanda 💋♥️

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Re: October 2019 chemo starters

I’ve had a cough for ages too. Assumed it was hanging around from the cold I had in Week 2 of round one of EC but then it could be the lung nodules that showed up on my CT or the chemo. Who knows. I hate how ambiguous this disease is. Off for a biopsy on a lymph node that looks borderline today. So far I have been clear in lymph in all scans but they want to be sure. Here goes....

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Re: October 2019 chemo starters

I thought it was days 10-13 but I may be wrong, hope your chest infection improves. I’ve had a cough for weeks, just get rid of it the week before chemo, then it comes back straight after chemo 😫

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Re: October 2019 chemo starters

Purple Trunks,

Just to update- did have 2nd chemo after leaving hospital 5 days earlier being treated for chest infection. With slightly different anti-emetic meds, things are better this time. I was really down presuming it would be delayed again.

I am concerned about picking up another infection. Is it the 5th to 10th days after chemo when our immune system is really low?
Thanks

 

CureDars

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Re: October 2019 chemo starters

Glad to hear your op went well Kath and wish you a speedy recovery  👏👏

 

I too claimed on critical illness insurance which paid out with minimal effort on my part.  Makes this illness more financially bearable I guess 😔

 

Amanda 💋♥️

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Re: October 2019 chemo starters

Thank you Curedars.

and food hasn’t been bad Shi, delicious vegetable dish - like a ratatouille with cheese on top 🤗yum

xx

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Re: October 2019 chemo starters

Sorry, have not been in on your story the last few days. Congrats on getting to this point. Hope you get home and enjoy the weekend.

CureDars


@KathCurtis wrote:

Nice thought re insurance policies. Good to get something back. Sadly we gave ours up as they become increasingly expensive as you age.

But in the good news department- my lung op is done and I am recovery very quickly so expect to be discharged tomorrow ??. One down and one to go .....

wish you all a good weekend 

kathxx



@KathCurtis wrote:

Nice thought re insurance policies. Good to get something back. Sadly we gave ours up as they become increasingly expensive as you age.

But in the good news department- my lung op is done and I am recovery very quickly so expect to be discharged tomorrow ??. One down and one to go .....

wish you all a good weekend 

kathxx


 

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Re: October 2019 chemo starters

Kath, what food delights have you had for tea tonight? Hope your trust is as good as mine is on the food front 👍💕😁Shi xx

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Re: October 2019 chemo starters

Kath, I’m so pleased your operation went well and the turnaround has been very quick! I bet you’re glad it’s over and you’ve done it now. Hope you get discharged in time to chill at the weekend with your pup x x

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Re: October 2019 chemo starters

Thank you Emzlew and Shi, much appreciated 😊

xx

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Re: October 2019 chemo starters

Ladies, 

Came home after a week in our nearest NHS accommodation. Great to sleep without drips attached etc. Certainly feeling better but will I manage chemo next Monday? Coincidentally, I had my head shaved the day before being  admitted to hospital and I was so pleased- no hoovering up to do! Used a different beanie day and night and  I was warm and comfortable. On and upwards!

 

cureDars

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Re: October 2019 chemo starters

👍😘👍kath that’s great news lung op done and recovery going well 😘😘hope you get home tomorrow ❤️ Your woof needs a 🐾🐾 with you 💕💕Shi xx

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Re: October 2019 chemo starters

Fantastic news Kath!  

Keep fighting 🥊🥊💪💪 

 

Sending lots of healing thoughts your way.. 

 

Emma x❤️x

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Re: October 2019 chemo starters

Nice thought re insurance policies. Good to get something back. Sadly we gave ours up as they become increasingly expensive as you age.

But in the good news department- my lung op is done and I am recovery very quickly so expect to be discharged tomorrow 😊👍. One down and one to go .....

wish you all a good weekend 

kathxx

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Re: October 2019 chemo starters

Hi ladies, just wanted to make you aware about claims on critical illness insurance policies, I’ve made a claim and been paid out in full for my breast cancer, please check any policies you have as you may be due a payout. Better in your pocket than the insurance companies x

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Re: October 2019 chemo starters

Thanks for kind reply Purple Trunks. Yes some days the woes can appear worse. Hopefully if one particular blood test comes back ok I will be leaving hospital tomorrow. Then chemo attempt AGAIN on Monday. 10 K you say- definitely worth it when we’re brave enough to try and cope with it.

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Re: October 2019 chemo starters

Thank you Claire, this time tomorrow LC will be in the bin! Screwing up my courage and holding on to that thought. 
xxx

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Re: October 2019 chemo starters

Good luck tomorrow Kath. Will be thinking of you x

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Re: October 2019 chemo starters

Goodness the FEC sounds really horrible. Not looking forward to that at all. Hang on in there folks. Just think that whatever hell its putting you through the bc is hating it even more!

wishing those of you suffering a speedy end to the torment. Until then here is a little more Luna to amuse you.

love

kath

xx064ABB78-3AEF-4041-AC58-263E4A96ABF4.jpeg

 

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Re: October 2019 chemo starters

Oh CureDars that sounds rotten! Fingers crossed your infection passes soon. No fun to be in hospital? Shame you arnt in Gloucestershire or I would pop in and bore you with my own chemo woes 😆

 

Something to distract you... I was told in chemo that each bag is over 10k!!!!! We are so totally worth it!!! 😉😘🥰

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Re: October 2019 chemo starters

Thanks for reply mini mad. I was also brewing a chest infection at the time and ended up on 2 lots of antibiotics. Chemo 2 was delayed as white cells were too high and the inertia continued. I had no 3rd good week! In 4 th week I had one great day and then that night temperature spiked the Christie recommendation. Admitted to hospital, put on IV antibiotics and been in 5 days now. So chemo delayed again!!! Today some good blood results so try again next Monday. Desperate to enjoy the 3rd week next time. Grateful for all the encouraging posts. Things can only get better😆

 Curedars

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Re: October 2019 chemo starters

Hi ladies, I haven't been on in a while as I was enjoying my third week feeling ok! 

Kathcurtis- thinking of you for Wednesday and your new puppy is gorgeous! 

Just had my second FEC with a dose reduction of 10% with cyclizine added in from the start and a higher dose of ondansetron so we'll see how it goes. By this point last time I'd felt faint and the bad nausea had started. Got some a lift  nausea, a fuzzy head, and just feel weird but I'm getting as much fluid in as possible and munching slowly on some Ritz crackers! Fingers crossed!

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Re: October 2019 chemo starters

So kind of you, and yes it does sometimes feel like we have gone through the Looking Glass!

x

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Re: October 2019 chemo starters

Morning Kath,

 

Will be thinking of you weds. Dont we now live in a funny old world where everything seems to spin without us whilst we poison, burn, chop and wait?!! The fact they can just take the loblule out is very hopeful. Really hope you are coping. 

 

Much love xxxx

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Re: October 2019 chemo starters

Thank you Shi 🙏💕

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Re: October 2019 chemo starters

Kathcurtis 👭❤️👭for Wednesday 😘😘 we are all 👭👭for you and that little woof woof you’ve added to your family is woofing you along too 🐾🐾💕💕Shi xx

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Re: October 2019 chemo starters

Hi all

Good to hear some positives happening for people! 
I have op to remove the cancer from my lung on Wednesday. They hope to be able to remove the whole lobe via keyhole surgery. Got my fingers crossed as it would mean a speedy recovery and quicker return to chemo for the bc. 
Wishing you all a good week 

Love

kath

x

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Re: October 2019 chemo starters

All positives should be shared and celebrated however small! I didn’t need any anti sickness medication today! Yay!

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Re: October 2019 chemo starters

Had to pop in to hospital this morning to get some neck pain checked out. No ones worried, probably just neuralgia. But, the good news, is that my neutrophils are up to 5. They were only 1.8 before I started chemo so I'm very chuffed and can worry less about becoming severly neutrapenic again now. Well, I'm going to worry less, even if it's not correlative. 

 

Had to share my very small good result! Have to take it where we can right?!!

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Re: October 2019 chemo starters

Hey Em, 

I had my 3rd, and last,  fec this week too. They halved my steroids this time so I'm more nauseous but sleeping more which is a massive boon!! I get hot face flushes too and found a cool a refresh face spray that gives momentary relief... 

15739814929488271708933160394391.jpg

 

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Re: October 2019 chemo starters

Hello lovely ladies

How are we all doing? 

Had round three FEC yesterday.  Feeling wiped out but no sickness whoop whoop! 

The hot flushes are just ridiculous.  My wife went out and got me a chillow yesterday which was lovely to start with until it ended up like a hot water bottle!  I need a second one I think to swap around through the night!

Indigestion has started too. 

Other than that, just tired today.  Roll on tomorrow to see what other delights appear?! 

Take care everyone X💗X

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Re: October 2019 chemo starters

Kath - Such a cute puppy and great distraction from all the rubbish!! Hope she’s settling well x

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Re: October 2019 chemo starters

Thanks for your cheerful reply.