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October 2019 chemo starters

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Re: October 2019 chemo starters

Thanks mini mad that’s really reassuring. Sitting in the chair having EC4 right now. Lady next to. E having problems with reactions to receiving Paclitaxel but we are all so different that I am sure it will be fine. 

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Re: October 2019 chemo starters

Morning Cherryp,

 

re the neuropathy with paclitaxel n carboplatin i had a little in my fingers n hands,  which has now gone completely.  My toes and feet where affected but now it is getting a lot less and can see it disappearing completely i hope,  but its not bad n i dont have it every day.

should it happen to you,  be sure to mention it to yr chemo dr/nurses so they can ieep an eye on things.   Any other questions just ask

mini mad xx 💖💖

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Re: October 2019 chemo starters

Hi all

Everyone seems to be having twists and turns in their journeys. Hope you are all able to enjoy some rest and respite from tests and treatment over Christmas. My very limited chemo experience was just the first two of first round of Carboplatin and Paclitaxel. Was way better than i had feared - only suffered indigestion and a little tiredness. It was almost too small a sample to mention but as i see some people worrying about it at least it might help knowing that you won’t necessarily find it unpleasant to start with !

 I am having a bit of pain post surgery so am pleased to be off to see nurses for a check up today. 
love

Kath

xx

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Re: October 2019 chemo starters

Hi Cherryp,

It has reduced so hope it was encouraging for you. We’re so dependent on everyone else’s knowledge going through all this. You’re a step in front of me. Have lymph involvement.  Had 3x EC and expect MRI results early Jan before starting 9 x Paclitaxel .Also have lung nodule and another CT in Jan to check on it. Have read and heard differing accounts of this weekly one. Must admit to being anxious about it but hope Christmas will take my mind of it too. Perhaps mini mad can help.

Everyone, enjoy what you can. A healthier New Year to us all.

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Re: October 2019 chemo starters

Thanks mini mad. Did you get neuropathy? Apparently it can be more common when getting it weekly. 

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Re: October 2019 chemo starters

I had the genetic testing. Gave blood for it on 16th October and got the results Friday 13th which were negative which was such a relief. 

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Re: October 2019 chemo starters

Hi Cherryp,

 

i also had Paclitaxel and Carboplatin over 12 weeks.  Paclitaxel was once a week and Carboplatin was every 3 weeks.

i finished my chemo 3 months ago now so if i can give any help/advice once you start ( i know thats not for another 3 weeks ) please ask 👍  and good luck 💖mini mad xx 💖💖

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Re: October 2019 chemo starters

Yes I had genetic testing. Takes quite a while to get results. I didn’t have the gene but needed mastectomy because skin was compromised!  Fingers crossed for your MRI. Let us know how it goes 

kath

xx

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Re: October 2019 chemo starters

Have any of you ladies had the genetic testing? To see if you have the BRCA1 gene? My Dr has referred me for it to decide whether a lumpectomy or mastectomy will be my surgery option. I have been referred for my mid chemo mri to check on the size of my lump x

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Re: October 2019 chemo starters

Great news on scans Cherry. Hope new regime will be kind to you. 
I took off the post surgery bra for the first time this morning and have suddenly hit some pain. Damn. Taking pain meds and hoping it passes! Have called nurses for advice so hopefully will soon be sorted. It is one hurdle after another for us folks. Hope you are all able to enjoy some Christmas cheer 🤞🎅🎄despite it!

love

kath

xx

 

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Re: October 2019 chemo starters

Scans were OK. No spread lymph and looks like the nodules in my lungs are scar tissue so just the lump to deal with. MRI showed it hasn't done much on EC 38mmx18mm to 35mmx15mm but as it hasn't grown they are OK with me having dose 4 so that I don't have to rush back from aunts for weekly sessions. 10th Jan I will switch to Paclitaxel and Carboplatin on a weekly basis. Not looking forward to that but it's another 3 weeks away so that's good. 

Hope everyone is starting to feel like they can face the festivities next week?

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Re: October 2019 chemo starters

I’ll hear all my scan results tomorrow and they will drive whether I have EC4 or switch to Paclitaxel but I really don’t want to change drugs this side of Xmas in case I have the same side effects that some of you have had. I’m supposed to be taking my mum and sister to my aunts up in Nottinghamshire as it’s our first Xmas without dad so could do with “only” having my usual nausea. 

 

I discovered the sweets called gin gin last round. They are ginger candies and they worked a treat for me.

 

 

 

 

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Re: October 2019 chemo starters

Really pleased to hear they have sorted the Paclitaxel for you Clare. Hopefully it will be easier on you now!

love

kath

xx

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Re: October 2019 chemo starters

Glad to hear you're not doing too bad Kath. Have been thinking of you. 

All ok here after dose 2 of paclitaxel. They lowered the dose slightly so that I don't react again but luckily no extension to the regime so it's ok. 

 

Hope everyone else is doing ok? Purple trunks are you out of hospital yet??  X

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Re: October 2019 chemo starters

Hi all

surgery survived, and much less difficult than I expected! I shed a few tears for right breast before surgery but it was time to part to save my life, so i have no regret today. In fact I feel so happy to have the two surgeries behind me!

How were your scans Cherry?

and how is everyone else?

love

kath

xx

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Re: October 2019 chemo starters

Thank you Shi 😊 🙏 

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Community Champion

Re: October 2019 chemo starters

❤️👍❤️😘kath 💕💕shi xx

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Re: October 2019 chemo starters

Thinking of you Cherry and hope you can get a good balance for Christmas Chemo sweetheart! 
Xx

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Re: October 2019 chemo starters

Glad things went well Kath. CT scan today and MRI tomorrow to see how things are going for me. Nearly half way through chemo now. I want to consider Christmas in deciding what drugs I have this Friday ! Trying not to be sick over Xmas as we lost my sad to cancer back in March and I need to ge strong for mum and sister. 

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Re: October 2019 chemo starters

All done and apparently went really well 👍. Just celebrated with Turkey and cranberry sandwich 😊. Looking forward to my Christmas 🎄🎅🌟. Wishing you all a good night 

xxx

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Re: October 2019 chemo starters

Thank you, much appreciated 🤞🤞🤞

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Re: October 2019 chemo starters

Good luck for tomorrow Kath x

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Re: October 2019 chemo starters

Hi folks, photos just won’t load for me atm. Phone keeps saying it can’t upload. So sad! Will try again after hospital. You all take care.

love Kath

xx


@Purpletrunks wrote:

Yeah go on Kath, send us photos 😊😊😊


 

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Re: October 2019 chemo starters

How are you doing today purple trunks ❤️I hope thing are settling down for you 🤞🤞💕💕shi xx

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Re: October 2019 chemo starters

Yeah go on Kath, send us photos 😊😊😊

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Re: October 2019 chemo starters

❤️❤️kath, photo updates on Luna for the thread ❤️❤️❤️ I am sure everyone’s heart melts she’s adorable ❤️❤️ I know mine did when you posted the photo of her ❤️❤️💕💕shi xx

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Re: October 2019 chemo starters

Thank you Shi.

Lovely Luna is a great distraction for us, she is a lot of fun and a lot of work, all of which is good for us! 
wish everyone a relaxed Sunday 

Kath

xx

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Community Champion

Re: October 2019 chemo starters

Hi kath private message, if you pick someone to set up the what’s app group and pm them your number so they can set the group up for your meet up ❤️ Hope that helps. Hope you’ve been enjoying 🐾🐾hugs 😘💕💕shi xx

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Re: October 2019 chemo starters

What is “pm”?

 Thanks Shi

k

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Re: October 2019 chemo starters

If all of you pm one of your group then they can set up what’s app group for you to arrange your meet up safely ❤️ You should all have the ability to pm as you’ve been on the thread a while now. Anyone got any problems with pm’s please ask the mods to look at for you ❤️💕💕shi xx

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Re: October 2019 chemo starters

How do we share numbers for a what's app group on here then shi? X

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Re: October 2019 chemo starters

❤️ Purpletrunks I’ve responded on your other thread ❤️ sending 👭👭❤️❤️to you all and reminder to arrange meetings on a what’s app group or pm each other on here, the threads are open to the world to read, please keep safe 👍💕💕shi xx

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Re: October 2019 chemo starters

Ouch, that’s grim Purpletrunks. Good you are in hospital where hopefully they can look after you and get you back in better shape soon! Thinking of you and sending positive vibes for wellness. Thank you for thinking of me in the middle of all you are going through. You are so thoughtful 🥰. Wishing you well and home soon,

love

kath

xx

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Re: October 2019 chemo starters

I am still in hospital, with no sign of being allowed home until next week. Diarrhoea isnt responding to any drugs, and is continuing to be pretty bad... 11 times so far today and counting! I had an infection on top of everything too, although that seems to getting better.

 

I had oral thrush and ulcered nostrils and lips. This is all easing a little, but my hands are on fire! Itchy red dry rash and peeling. 

 

My onc indicated they would reduce tax dose, but consultant today suggested I shouldn't have it again as it clearly doesnt agree with me.

 

Hows everyone doing? 

Good luck for Monday Kath. ❤❤

 

 

 

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Re: October 2019 chemo starters

Thank you cureDars

x

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Re: October 2019 chemo starters

Kath,

All the best for Monday. We’ll be thinking about you. ( Not having surgery till after chemo myself.)  

 

CureDars

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Re: October 2019 chemo starters

Thank you Jasmine, that’s very kind

xx

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Re: October 2019 chemo starters

This is really good to hear Kath and I wish you all the best x

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Re: October 2019 chemo starters

Purple Trunks,

So sorry to hear you’re going through such a rough time. You encouraged me after diagnosis and I will always be grateful. I can sympathise with the hospital stay and the IV antibiotics- after 1st EC. Yes, we are  in the right place  but it’s no picnic. Food was atrocious- I’m normally try to be appreciative- but after chemo it’s tricky anyway, isn’t it? 
Please keep us posted and hope you’re home very quickly.

 

CureDars

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Re: October 2019 chemo starters

Hi all

very sorry to hear that chemo is taking it’s toll on so many of us. I hope you are all on the downhill and will soon be through the torture? Can you see the end in sight yet?

 I am making a good recovery from lung surgery and the bc has shrunk enough for me to have mastectomy on Monday. Bit daunting to say the least, but will be great to have all the known cancer out. I will then start preventative chemo for lung and breast in New Year. I can’t remember if any of you had mastectomy, if so any advice/tips.

Hoping you can all enjoy some of the festive season,

love

Kath

xx

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Re: October 2019 chemo starters

Claire it’s strange you say that my mum has developed an allergy with plasters too..

she suffers from diarrhoea towards the start and end of cycle with bad cramps but no more than 3 times a day

 
I’m sorry to hear you’re in hospital purpletrunks but like you say the best place to be for you now, and hopefully you’ll be feeling good for Christmas Day ! 

my mum is waiting for the results from her bone scan (she had it last Thursday) after they picked up something on her spine (confirmed) next chemo is on weds and I am taking her to the garden centre to see the Christmas decs! 

my brother coming back from uni for Christmas too so she is looking forward to that x

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Re: October 2019 chemo starters

I'm on paclitaxel. It's a high dose though because I'm having it accelerated. 

I've come up all blistered where the plaster was! Hopefully it'll go away after treatment then. I've not heard it's a thing but maybe a sensitivity isn't uncommon! I'll ask when I go for my bloods today 🙂

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Re: October 2019 chemo starters

Are you on docextol too Claire? Sorry, you have probably said 🙈. My next one is 27th dec, so at least I should be reasonably ok for xmas day. 

 

Interesting what u say about plasters... I normally have very UNsensitive skin but seem to have reacted to  plaster they used last week at chemo. It's really red and itchy. Is that a chemo thing do you know?

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Re: October 2019 chemo starters

Aww guys I'm so sorry you're feeling so tough. I was hoping that once the fec finished you would be much better on the t.

I'm in a similar boat. I had a trip to the hospital too for my tummy. Temperature spiked so they did blood cultures and found something odd. I'm waiting to see if it was a contamination though. I recovered fairly quickly but still can't feel my fingertips from numbness. They might change my regime but my onc is at a conference so won't know til he's back. I hope not. Wanted to be ok for Xmas 😞 

I have also developed an allergy to plasters in amongst it all!! 

I'm hoping we all have a good weekend. Get well soon guys. Xxx

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Re: October 2019 chemo starters

Morning.

 

Not gone so well for me this cycle. The diarhea started sat, 2 days after docextol. Severe to say the least, over 20 times on sunday!!! By Tuesday I was admitted to hospital for fluids. Still have it, still here. I contracted an infection too so now having iv antibios. Goodness know when I will get out. 

 

I missed my little girls nativity, which made me sad. But otherwise at least I'm in the right place. My neutrophils are playing ball thank goodness. Staff are lovely. Food is atrocious... and I have oral thrush so cant eat much anyway. 

 

My onc said we will reduce the dose next time.

 

Sorry to hear your tummy is affected too Emzlew. Once I'm outta here we can meet up to talk dirty about Dox, bloody stuff!! Although I think I would still have it over fec!

 

😊😊

 

 

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Re: October 2019 chemo starters

Hi Purpletrunks

 

How's your week been after new Meds? 

 

Meeting up sounds like a great idea. It would be nice to have a cuppa and a chat with someone who knows... You know?! 

 

I'm struggling a bit this week.  The sickness has been great this time, nothing at all!  I did end up in A&E on Monday and after his and an x-ray I turns out I have a chest infection so I'm on antibiotics now.  Fingers crossed I will feel better soon! 

I am however struggling today with my tummy.  Horrible tummy pains and cramps and diarrhoea 🙈. Again, I'm guessing it's all part of this wonderful journey but because I've "been"a few times today I might have to go in again 😭 

Feeling quite down still..  which is getting me down 😔 

 

Hopefully a better day tomorrow?! 

 

How is everyone else? xx

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Re: October 2019 chemo starters

Crikey, I wish my monthlies would DO one! 🤣🤣

 

I'm much better on D/h/p than on FEC so far... long may it last.

 

EMzlew, you might just get them back in before the mayhem of xmas holidays 😉

 

Mortimer is only 1.5 hours from me... if driving is good for you, and you fancy company/coffee then I'm happy to try and meet outside swindon in a couple of weeks. Obvs happy to.meet anyone, but I think 45mins driving is prob my limit. 

 

😊😊

 

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Re: October 2019 chemo starters

Glad you're doing a bit better emzlew! 

I haven't had any of my monthlies either since day 1. No idea if they will come back. I'm happy with my little boy and didn't want another so not so fussed about them but didn't really want to start the menopause at 36!! 

I've put on a couple of pounds - read more than a few here!! 😉 I crave the sweeties on the steroids!! 

I've started wearing my wig on and off when I go into work on my good weeks and it's actually ok. I'm getting used to it and people say it looks natural. I'm also not adversed to opening the door with my fuzzy head now though! Go baldness! 

I'm rooting for you all x

 

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Re: October 2019 chemo starters

Hey everyone. 

 

Feeling pretty good so far after my first T/P/H even with no sleep last night.  It must be the steroids but I've been up and down like a yo yo.. 

 

Interesting on the hair thing.  My hair is so bizarre.  I've been left with a fuzz that looks like it's growing (seems too be only the grey unfortunately 🙄). I'm expecting it to fall out now this one has started.  I do have a wig but I haven't worn it yet. I'm trying to embrace my baldness 🤣 My eyebrows are thinner and my eyelashes are few and far between.  

I've bought myself some of those magnetic eyelashes and I have to say I LOVE them!! 

I've got some c- lash ones to try too.  I'm going to try today.  I will let you know. 

 

Feeling frumpy where I'm putting on weight.  I CANNOT STOP EATING!! 

I never had morning sickness with any of my pregnancies, even with the twins but I'm guessing it's what is like if you do suffer?  When you feel queezy so you eat to get rid of the feeling.  Well, I must be queezy all the time as I'm grazing all day!! I'm not complaining as I know some can't eat which is more worrying and distressing and I'm sorry to offend anyone but I seem to be out of control!  I will get this battle out of the way before I worry about it!! 

 

On the topic of monthlies...  I haven't had one since I started chemo?  I was reasonably regular before, maybe missed one or two occasionally as I believe I was perimenapausal but since this, I've had nothing!!  

I was told it would push me through the menopause I'm certainly flushing enough for it to be!! 🙄🥵. Every few minutes it seems?!

I live in a place called Mortimer and my treatment is at the Royal Berkshire Hospital in Reading.  The staff have been amazing since the first day.  My oncologist seems a little blunt and to the point but as long as he does what he had to do I don't mind that at all!!  I did manage a smile from him last week.  I am going to make it my mission to get a giggle from him!! 😁

 

Have a good day everyone x❤️x

 

Ooh, kids are on the up so hopefully some normality can resume next week when they go back to school and pre school?! 🤞🥰

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Re: October 2019 chemo starters

Purple trunks, saying that her leg hair fell out but is growing back too as well! She hasn’t lost all hair just thinned. She has fair eyebrows and they’re still intact, not sure about eyelashes as she has straight short ones which have been passed down to me :)!. They’re are some great tutorials on eyebrows. I have bought my mum a hat with a built in wig so will update, she was worried it would be uncomfortable but the hair is like a halo so hopefully soft on the head. X