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September 2018 Chemo Starters.

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Re: September 2018 Chemo Starters.

Fantastic news GabyF ... such a relief for you and your children xx I’ve not been offered a genetic test ... does everyone get offered the test? xx

Jacqs - my fingernails have white horizontal lines on them too although the ends aren’t brown. Hoping mine last too. My little toenail has gone brown tho 😬 xx
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Re: September 2018 Chemo Starters.

Hi everyone,

Finally had the result through from my genetic test: I'm all clear, no genetic link just bloody bad luck! I'm so happy for my children, as they won't have this cloud hanging over them. ☺ 🙃 🎇 🎉 😁

Gx
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Re: September 2018 Chemo Starters.

Hi All

So relieved to hear your news Pulapula 🤗❤️

Just ticked another Session off the list.  Now 2 is the magic number.  I’ll be joining you Mama Tony & Lisa in finishing by end Dec.

I took my nail polish off last night & this is how my nails look.  They’ve got horizontal stripes & tips are looking very brown.  They’re still intact & not lifting so i’m hoping they survive another 2 sessions  - Anyone else experienced this ? Xx

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Re: September 2018 Chemo Starters.

Hi Pulapula,

 

What a reilef this must be for you - brilliant news! Will you need to have any treatment for the cysts?

 

I was very interested in you comments about your tumour. I suspect that I will be in a similar position, as I am tripe negative and the tumour can no longer be felt. You don't seem to have been given a lot of time to make these major decitions, but I hope that you can get lots of support in this process from your oncologist and BCN. Do you have a Macmillian or Maggies Centre you could approach as well? They probably wouldn't give you specific advice, but perhaps they have someone who can talk the options through with you?

 

Enjoy your Xmas shopping!

 

Gaby x

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Re: September 2018 Chemo Starters.

Ahh that’s such a relief Pulapula ❤️ so pleased for you. Good luck with your decision about surgery ... you get bombarded with info and it’s hard to know what to do for the best.

Fantastic to be ringing that bell before Christmas MamaTony ... I’ve got my last T on 27th December so will also be celebrating and bubbling 😂 Not seen a bell at my unit tho (it’s only a small unit) so might have to take my own bell 🤣. I think I am also leaning towards DIEP flap reconstruction, when I’m ready for reconstruction (can’t face it yet). It’s amazing what they can do ... can even get my other boob made a bit bigger ... every cloud 😂 xx

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Re: September 2018 Chemo Starters.

Hi all. Just an update from today. Feel so relieved that the lumps I found in my good breast were cysts. Phew.

I’m a bit disappointed that the chemo hadn’t shrunk my tumour as much as I and my oncologist thought as it can’t be felt anymore. It was about 30-35mm before and was still 24mm in length (although in 2 bits and flatter than before). I have the option of breast conserving surgery (lumpectomy) or skin and nipple sparing mx with reconstruction. I’m thinking the latter as I’m triple neg and worried about recurrence. But recovery is longer. Surgery booked for 21 Dec so I need to get organised about xmas!!!
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Re: September 2018 Chemo Starters.

Hi Everyone,

Not posted for a wee while.

So happy for you Gaby that is great news. My tumour shrunk by 1/3 after one docetaximol which I was delighted about, however, have had 2 more and doesn’t seem to have changed which is disappointing☹️ They do say can be scar tissue and not all tumour as a result of the biopsies so hoping it’s that 🤞 Just one more docetaximol for me on Dec 20th and will be ringing that bell 🔔 and bubbling like a 2 year old 🤧🤧🍾🎉

Hope your mouth feels better soon Kath.

Next stage for me is meeting with plastic surgeon on Monday re operation in jan. Need to try and persuade them I want a double mastectomy and not a single one as they are recommending. Should get result of genetics testing any day now and they said if was positive they would do the double but I want it either way. I’m triple negative so want to lesson the risk of reoccurrance.
Researching the DIEP flap reconstruction which is a scary thought both the op and the recovery, however it has been referred to as the gold standard for reconstruction, anyone have any experience of it?

Hope everyone is catching up with their missed sleep 😴 and SEs are calming down. Lots of love 💕
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Re: September 2018 Chemo Starters.

Morning all,

Big hugs for today Pulapula for your results ❤️ Will be thinking of you xx

Sorry you had to cancel your treatment this week Kath - it’s really frustrating but probably for the best as it needed doing asap! Hope your tooth pain has eased today ❤️

Fantastic news about your lump GabyF 😘 Hope all goes well with your last Paclitaxel today - a great milestone to reach - feels like we are actually getting through this nightmare Xx

Hope everyone has a good day xx
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Re: September 2018 Chemo Starters.

Sending a big hug Kath. Sorry your in pain and hope it eases tomorrow. It’s really frustrating when you have to miss a week, but best to deal with the immediate problem. Take care xx
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Re: September 2018 Chemo Starters.

Just an update.

Chemo has had to be cancelled for this week and I've spent the afternoon at dentist.

Had to have 3 big fillings. Am in pain tonight.

Thank you all for asking about me.

Hope you are all coping and had a good day.

Love

Kath xx
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Re: September 2018 Chemo Starters.

Hello Ladies,

So happy to hear your positive news Gaby 

Pulapula - sending you lots of positive vibes for a good result from your mri tomorrow.  

Kath - so sorry to hear about your tooth.  Were they able to do any dental work.  How are you coping with it? I can’t quite imagine how you deal with dental pain on top of all the other sh*t. 

A Little Pixie - hope you enjoyed the time with your mum & sister.  I’ve got my family visiting on Sunday for a pre- Xmas get together.

We saw the Fantastical Beasts film yesterday - very good.  Setting the scene for a few more films to come I think, although I did doze off at beginning.  Oops 😴😴😴

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Re: September 2018 Chemo Starters.

I skipped out of my oncologist'office with a big smile this morning: she can't feel my tumour anymore!! 🎉 ☺ 🙃 Of course I know it's still there, but somehow the fact that neither of us can now locate it seems so much more exciting than the rather more scientific MRI.

Tried getting hold of someone at Guy's to find out about my genetic test, but ended up just leaving a message for some admin person. Frustrating! 😤

Gx
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Re: September 2018 Chemo Starters.

Hi Pulapula,

I really hope they can work out quickly what that lump is. Waiting for results is so nerve-wracking. Christmas shopping sounds like an excellent idea for taking your mind off things. Enjoy yourself ☺.

Thanks for getting back to me about your genetic test. That's amazing they got back to you so promptly. I had my test 10 weeks ago and am still waiting 😡. I'm waiting to see my oncologist in 30 minutes so will ask her if she can chase it.

Lovely sunny day here in London, so I walked to hospital. It's good getting some fresh air, sunshine and gentle exercise.

Last Paclitaxel tomorrow, then 4 rounds of EC. Feels like a good milestone. ☺

Have a good day everyone.

Gx
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Re: September 2018 Chemo Starters.

Thanks Lisa-T, I hope it is something similar - I’m feeling a bit better about it now. Maybe some retail therapy tomorrow will help. Need to get organised for Christmas anyway.

Hope you get to see wicked on Saturday x
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Re: September 2018 Chemo Starters.

Hi Pulapula,

I also found another lump a few weeks ago and it turned out to be breast tissue that had hardened!

It’s the waiting for results that’s the worst bit and you feel like you are going back to the start again. Hope you don’t have to wait too long for your mri results. Stay positive ❤️ Big hugs. Lisa xx
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Re: September 2018 Chemo Starters.

Evening everyone,

Pulapula - Ahh so sorry to hear you’ve found another lump ... try not to panic (I know that’s hard) ... it could be anything. Doesn’t stop the worry, and you will, but stay positive ❤️

ALittlePixie - I hope your Mum didn’t get too much of a shock with your new look. Enjoy your early Christmas celebrations 🎄

Galligirl - hope your leg pains ease soon 💪🏻 ❤️

GabyF - Hope you get a better nights sleep tonight - I’ve always liked my sleep so I struggle when I wake up too early 😴 Although it is quite handy for a bit of online Christmas shopping 😂

Kath - what rubbish timing for your cracked molar - hope you get it sorted soon

Got my 2nd T on Wednesday 😬 at least I know what to expect this time. I’m hopefully going to see Wicked on Saturday. Booked it nearly 2 years ago so determined to go 🥊💪🏻 ... just hope I don’t fall asleep 💤 🤣

Keep going lovely ladies ... hope you all have a good week xx
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Re: September 2018 Chemo Starters.

Hi Gaby, I think someone on this group had something similar with a new lump in other breast and it turned out to be a cyst (I’ll have a read back shortly). I think I’ll call my BCN tomorrow just to make her aware and see if my MRI results are back yet.

I am relieved about the genetic test result. Whilst it would have given a reason why, it’s good to know as I have a 13 year old daughter. I had the test done on 10 Oct and they tried to ring me last week but sent a letter instead so that was 7 weeks?
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Re: September 2018 Chemo Starters.

Hi pulapula,

Definitely not an easy day for you - I really hope that lump you found turns out to be nothing to worry about. However, the result of your genetic test is fantastic, you must be so relieved. I'm still waiting for mine to come through. How long did you have to wait?

Gx
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Re: September 2018 Chemo Starters.

Hi kath - hope you can get your molar fixed and that it’s not causing too much pain.

Sorry to hear some of you are not sleeping well. I tend to sleep ok once I’ve drifted off but sometimes find the drifting off bit hard.

Alittlepixie- hope you enjoy your family time. My mum was upset about my hair at first but soon got used to it.

Bit of a mixed day for me. I had my post chemo mri on fri and get the results weds so I’m all geared up for the surgery discussion. As my lump had shrunk I was feeling good. But I’ve just had a shower and found a new lump in the other breast! Trying not to worry and at least we’ll have the scan results on weds so will know what’s going on. But it was a shock to find it! Trying to convince myself it’s a cyst or hormonal response to having my mirena coil removed on Friday.

On a positive note, my genetic testing results came today - they were negative so that is a big relief in terms of worrying about my 13 year old daughter and my sister.
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Re: September 2018 Chemo Starters.

Morning everyone,

I did eventually drift off and have just treated myself to a lovely facial, so not feeling too bad now. I'm relieved that so many of us seem to have this problem. Our poor bodies and minds are having to put up with so much rubbish, I suppose it's not surprising we can't sleep properly.

LittlePixie: we're hoping to see Fantastic Beasts this weekend. I just hope I stay awake! 😀

Kath1977: what miserable luck! How many chemo sessions do you have left? Can you keep the temporary filling until you're done?

Have a good day, lovelies! 😘

Gx
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Re: September 2018 Chemo Starters.

Morning everyone.

I'm having a nightmare, cracked half a molar on Friday eating a subway as well as dealing with side effects.

Been to dentist this morning and can't do anything temporary. Needs a big filling.

Has anyone had any dental work while on chemo?

Am waiting for my oncologist to phone me back.

Hope you are all managing these horrid side effects and stay in the warm.

Love to you all

Kath xx

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Re: September 2018 Chemo Starters.

Morning everyone!!!
So sorry to hear you're not sleeping Gaby. I'm hoping in time our bodies will settle down and our sleep patterns return. I use music to help me drift off and I use meditation apps as well...Insight Timer is a good one that I use in the middle of the night.
Galligirl, I really hope those SEs ease quickly. I really feel for you cos it's so horrid. I used my heat blanket and baths to help ease the pain.
Jacqs - a cinema trip sounds heavenly, do enjoy! We're hoping to take Eve to see Fantastic Beasts soon. The cinema is an hour away tho so I need to build up a bit more energy first.
Aley - hope the sickness has calmed down now.
My sister and mum are coming to visit from Leeds for 2 days today, so I'll be celebrating Christmas early. I'm really looking forward to seeing them as I've not seen them since my chemo started. I'm hoping my mum doesn't cry when she sees me with no hair. She's 83 and very forgetful so I keep reminding her I've lost my hair so she doesn't get a shock.
Wishing everyone a lovely week ahead and hope those pesky SEs don't cause too much trouble for you. Lots of love xxxx
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Re: September 2018 Chemo Starters.

Morning Everyone,

Its awful not being able to sleep. Friday night I was awake will 3.30am, then Saturday spent most of the day snoozing.  It’s so hard to break that cycle especially when you just feel yuk.  

Hope you managed some sleep eventually Gaby.

Aley I hope you had a better weekend and that your SE’s have now calmed down.  

Its pouring down here, so we’ve decided on an afternoon at the cinema.  Always feels like such a treat.

have a good day all xx

 

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Re: September 2018 Chemo Starters.

GabyF - can’t remember the last time I really slept properly either...I just toss and turn...drift off to sleep then wake with a hot flush! Or freezing cold cos I have shoved all the duvet off....I now just sleep when I can and hope it will all sort itself out later! I would just love to wake up refreshed and ready for the day....

 

Been aching all weekend following T last Thursday.....every muscle and joint in my legs particularly....should probably go for a little walk but too tired 🤣💤

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Re: September 2018 Chemo Starters.

Hi everyone,

Here's my first middle of the night post - I simply can't sleep!! As soon as I got in to bed, my legs started twitching and since then I've had several hot flushes, but basically I'm just wide awake 😡. I can't even blame the steroids tonight. Had a good snooze after lunch yesterday, maybe that was a mistake? I am a bit worried that my sleep has generally become so disrupted and irregular, that even once I come off the chemo drugs, I might continue to have problems. Can't remember when I last had a night when I didn't wake up at least once. Anyway, I shall now try to lie down again and see what happens 😁 😴.

Hope no one is reading this right now and that you are all fast asleep!

Gxx
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Re: September 2018 Chemo Starters.

Thanks GabyF. Sounds like you’ve had a lovely couple of days and the creative writing sounds amazing..done most of my Christmas shopping online this year-such a godsend! Feeling a bit better now thanks. Thankfully last FEC! T just before Christmas so I hope it doesn’t wreak too much havoc!! Going for an easy one this year-M&S goodies! I treated myself to a kitchenaid which was delivered today, so I’m looking forward to making bread and treats tomorrow 🥖 enjoy the rest of your weekend all x
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Re: September 2018 Chemo Starters.

Evening everyone,

 

It's my left eyelashes and bits of my right eyebrow that seem to be going! Still got a few bits of hair on my head sticking out at odd angles, so yes, I'll also be a bit of a stunnner for Christmas Smiley LOL

 

I've been quite lucky with Paclitaxel this week: virtually no side effects except for feeling a bit tired and breathless, so I've taken advantage and had a couple of fairly busy days - meeting friends for tea, wrapping presents, and attending a university open day with my lovely daughter. It's been nice.

 

I also started doing some creative writing this week, just gathering up thoughts and ideas that have been floating through my mind over the last few months, and combining these with a bit of family history which I have been dabbling with. I've really enjoyed this - something to keep my mind busy, without any particular aim. I don't know how long I will keep it up for, but for now it's something to focus on and to stave off boredom. Smiley Wink

 

Aley: Sorry you've had such a rotten couple of days. I really hope you're starting to feel a bit better.

 

Have a lovely Sunday, everyone.

 

Gx

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Re: September 2018 Chemo Starters.

Thanks ALittlePixie,
Feel a bit better but bloated, had some toast, coffee now tea..so far ok..this has totally caught me off guard as last cycle was so good! I’m anxiously checking my left eyebrow as I’m sure it’s thinning..hope you lovely ladies have a good weekend 💖👍🏼
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Re: September 2018 Chemo Starters.

Hello!
Thanks Kath, that's good to know. I was the same on FEC with all the drugs. The anti sickness ones actually made me feel worse so I used to go cold turkey and risk feeling sick than take the drugs half the time!
Lisa - isn't it weird that it's just the right eyebrow for now?!?! I'm not pencilling them in yet. My eyebrows are quite fair anyway so unless people are really up close, they probably wouldn't notice too much. Plus, my glasses help matters. To be fair, they're too busy staring at my bald head 😂 I am getting some white fluff on top of my head tho which is quite amusing.
Ktk - I've not been able to wear my lenses since chemo cos my eyes hurt too much. I've two pairs of glasses so I wear my bigger ones to disguise my weird eyebrows 😂
We really do need a sense of humour having chemo and all it entails don't we xxx
ktk
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Re: September 2018 Chemo Starters.

I usually wear contact lenses with glasses as a back up but prior to chemo I went and got a new pair of glasses that were big enough to cover my brows. Although I have no brows now you can’t even tell!! Two months after last chemo I am just getting some regrowth....everywhere!!! Kx
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Re: September 2018 Chemo Starters.

Hope you are feeling better today Aley 💪🏻❤️

My right eyebrow is worse too ALittlePixie - although it’s not gone completely yet. Are you pencilling it on ... I’m not sure what I’m going to do when they do go 😬 Finally seeing some sign my head hair is coming back whoo hoo ... although it is coming through white 🙈🤣

Hope everyone has a lovely weekend ❤️ Xx
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Re: September 2018 Chemo Starters.

Morning Alittlepixie

I'm not on both drugs just the pacitaxel and I am only given steroids iv as a pre med before chemo.

With the fec I had so many tablets to take which I hated, anti sickness and steroids but with pacitaxel it is all done IV.

Hope that does help.

Kath xx
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Re: September 2018 Chemo Starters.

Morning everyone
Thanks Jacqs, that's really helpful to know. I'm not sure yet if I'll be on both drugs. I was wondering what they do re the steroids so that was really helpful, thanks. As to the eyebrows/lashes, my right side is bonkers. I think I have 5 hairs left on the right side and a full brow on the left 😂
Aley - I hope today is better for you and you're feeling more human. Really hope the SEs ease for you quickly x
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Re: September 2018 Chemo Starters.

Hi Jacqs
Thanks. Feeling a bit rough tbh..vomited about an hour ago and bit of a headache. Rang chemo unit for advice...they said ring us or 111 if you need to..sailed through the last one so this has caught me by surprise..didn’t help that the chemo nurse was from another ward and didn’t really know how to use the machine!
Sorry random question anyone had intra-mammary nodes involved?
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Re: September 2018 Chemo Starters.

Hi A Little Pixie - each hospital might differ but on the weeks that I only have Paclitaxel, I only have steroids as part of the pre-meds on the day.  I don’t have any more to take home & it does help.  Every 3rd week when I have Carboplatin & Paclitaxel I still have steroids for 3 days following chemo & they are the pits.

I agree with Gaby that the SE’s of Paclitaxel are so much more manageable and honestly having it weekly makes it count down a lot quicker.  

Only problem is, think we’ll have baldy eyes for Xmas. Maybe need to rock the 😎look for a while.

 

Kath - i’ve got a central line & it’s been such a boost.  My veins were rubbish from day 1, so had to have this fitted cause they couldn’t even get a picc line in.  Does make life easier.

 

Aley - glad to hear you’ve had your last FEC & hope the next few days are kind to you.

 

Enjoy the weekend everyone.  Sending hugs to you all xx

 

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Re: September 2018 Chemo Starters.

Please keep in touch with me and let me know how you get on.

Kath xx
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Re: September 2018 Chemo Starters.

Thank you so much Kath. I'm so pleased you've managed much better on the Paclitaxel. I was very much like you on the FEC and after this horrid T, I was really anxious about having something weekly.
Hope everyone is OK. Sending lots of love xxx
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Re: September 2018 Chemo Starters.

Please don't be apprehensive.

I'm on weekly pacitaxel and I have coped so far.

I have 3 kids and haven't been in bed one day so far.

Am doing school runs etc, the side effects I'm getting are hot flushes and aches and pains but is all manageable and doable.

When I was on FEC I was bed bound for weeks and so so ill. So much so they actually cancelled my last FEC as felt it was making me too ill.

Sending you positive thoughts

Kath xxx
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Re: September 2018 Chemo Starters.

Thanks so much for the Gaby. I am feeling quite apprehensive about having it weekly, so I hope I'll manage better on that. So....we still to take the steroids?! I really hate them!
Good luck for tmoz Aley. Hoping the SEs aren't bad for you and you sail through this last one X
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Re: September 2018 Chemo Starters.

Little Pixie: I have found weekly Paclitaxel quite straightforward. My SEs usually only last a couple of days and have included tiredness, slightly loose bowels, slight tingling in the mouth on day one, dry eyes and skin, hairloss, problems sleeping (but that's probably from the steroids), and just generally feeling off colour for a couple of days; also my neutrophils have crashed a couple of times, but that may have been the carbolplain and/or an accumulative effect. I've not had any nausea or vomiting, no serious aches or pains. It's really quite manageable.

 

About the hair: I've now lost virtually all the hair on my head - just keeping a few bits off fluff to help keep my head warm; it's cold being bald! Also lost all the hair on my legs and under my arms - nice SE that one!, eye lashes and brows have defintiively thinned as has my pubic hair (bit of an odd lokk that!). The only hair I've kep is on my forearms and I'm hoping that might still go Smiley Wink

 

Hope everyone is having a reasonable week. I was up 3 hours last night, bloody steriods! Am feeling ok otherwise though, which makes a nice change.

 

Gx

 

 

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Re: September 2018 Chemo Starters.

Thanks for all the comments re:nails I’ll be hunting down some silicium nail polish in the near future💅🏼 My BCN rang me today to let me know that my FISH result came back and I am HER2-..I have read that as the initial test was inconclusive I should maybe ask for a retest? Has anyone heard anything like this? 🤔 I might contact my oncologist to ask advice..
Has anyone suffered from bloodshot, dry eyes? My Gp gave me 👁 drops but I’ve noticed they’re particularly bad today..Last FEC tomorrow ladies..here’s hoping the SE’s are kind to me 😝
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Re: September 2018 Chemo Starters.

Hi Jacqs

Was all fine, have got a picc line in now so much easier and no stress with needles.

Came home and slept though as pre med drugs knocks me out.

I'm in single figures now which I am chuffed about only another 9 weeks to go.

Regarding the nail colours, my toe nails have gone black but finger nails are fine. Had my nails done yesterday as my sister owns a nail salon.

Had red Christmas ones, they are lush.

Since having t my eyelashes have gone and my eyebrows are patchy and thin.

Hope you are ok

Sending you big hugs to you and everyone.

Kath xxx
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Re: September 2018 Chemo Starters.

We were told to wear nail varnish containing silicium on both hands and feet to protect the nails. We were told to continue for 6 months after treatment.

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Re: September 2018 Chemo Starters.

That's happened to my right eyebrow and eyelashes too Jacqs! Weird eh?
How are people finding the weekly paclitcaxel as in SEs etc? Oncologist finally phoned and said I'd be having 6 weeks of it starting on 10th Dec. I just wondered how people were finding it x
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Re: September 2018 Chemo Starters.

Aley - my nails have horizontal stripes & are getting really discoloured.  I was also advised to wear nail varnish & keep rubbing in cutical & nail oils / creams and hope for the best.

 

Kath - I hope everything went well today for you.  I’ve just had my 5th session of paclitaxel.  Managed to get some meds from the doctor for oral thrush so let’s hope it works. 

 

I also woke noticed yesterday that half of my right eyebrow has dissapeared, along with a chunk of eyelashes on same eye.  😉

 

Stay well ladies xx

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Re: September 2018 Chemo Starters.

Aley, my nails seemed ok on FEC - had one T now and I have noticed one nail has discoloured so blaming the Ts!

Ahh no ALittlePixie 😘 sending big hugs. Hope your oncologist rings tomorrow and you get some help ... you shouldn’t have to keep battling on ❤️ xx
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Re: September 2018 Chemo Starters.

No worries, I just hope it helps. I feel horrific still unfortunately. My oncologist was meant to call me yesterday but is off sick so I'm just battling on for now. Hope you're doing OK xx
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Re: September 2018 Chemo Starters.

Hi ladies, my finger nails are discolouring I’m having my 4th FEC on Friday. Did yours get worse with T anyone?
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Re: September 2018 Chemo Starters.

Thanks ALittlePixie - will give that a go. How you feeling today ... any better? xx
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Re: September 2018 Chemo Starters.

Hey Lisa
My oncologist told me to paint my nails dark, use olive oil for my cuticles and make sure I wear gloves for washing up etc. I've bought a water based nail polish and so far, so good. Hope this helps. My nails/fingertips hurt but none are lifting at the mo xx