September 2018 Chemo Starters.

[GabyF]

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

[Pulapula]

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.

[GabyF]

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

[Kath1977]

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

[ALittlePixie]

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

[Jacqs]

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

[Galligirl]

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 🤣💤

[GabyF]

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

[Aley]

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

[GabyF]

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 

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. 

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

[Aley]

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 💖👍🏼

[ALittlePixie]

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]

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

[Lisa-T]

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

[Kath1977]

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

[ALittlePixie]

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

[Aley]

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?

[Jacqs]

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

[Kath1977]

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

Kath xx

[ALittlePixie]

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

[Kath1977]

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

[ALittlePixie]

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

[GabyF]

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 

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

[Aley]

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 😝

[Kath1977]

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

[kathyx]

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.

[ALittlePixie]

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

[Jacqs]

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

[Lisa-T]

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

[ALittlePixie]

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

[Aley]

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

[Lisa-T]

Thanks ALittlePixie - will give that a go. How you feeling today ... any better? xx

[ALittlePixie]

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

[Lisa-T]

My leg hair did go but it’s back again unfortunately 😂 Still got arm hair tho ... thought that would have gone too!

One of toe nails is now changing colour 😬 anyone have any tips ... or does it mean that I will probably lose it?

[Galligirl]

My legs have only gone this month...FEC 4....x

[Pulapula]

I’m very disappointed I still have hairy legs!

[Galligirl]

Slightly obsessed with hair growth! Didn’t really worry about having it shaved off but it growing back does make me feel like there is light at the end of the tunnel! But don’t think I’ll be rushing to book the hairdressers quite yet. 🤣

[MamaTony]

Hi all,

Can’t wait to see some hairgrowth, will be a huge milestone in getting back to ME🙎🏻‍♀️ Always felt my hair was my best feature lol always looked healthy and strong 💪 but it def didn’t like that FEC😭😭 even with cold capping am now almost bald apart from fluff that’s held on.

I was recommended to get my eyebrows microbladed before chemo and best thing I have done😀 They are holding up well and a far better shape than my old ones which is a bonus! My eyelashes are falling out especially my lower ones. Always look really tired now.

Looking forward to 2019 when I will be rebuilt lol

❤️❤️

[ALittlePixie]

Gosh, we're all gonna look like hot girls with patchy eyebrows and a cm of fluffy hair by Christmas! 😂😂😂

[Galligirl]

I definitely have some fluff emerging and hope that the T doesn’t make it all fall out! Looked up how fast hair grows....0.35mm a day! At 1mm every 3 days....a centimetre by Christmas...🤣🤞🎉

[Lisa-T]

😂 I keep taking selfies too ... a reminder of how bad I look at every stage ha ha! My eyebrows have gone very patchy too .. keep looking optimistically for some sign of head fluff growing but nothing yet! 😞

[Pulapula]

Aley - My hair does grow a bit between cycles but after fec 4 I’m almost bald now! I’ve shaved what there was to stubble today as it was so thin anyway. Still got thick eyebrows and some lashes. I never got a wig and find hats and scarves hot and itchy so I just go bald in public. I find it very liberating! I’ve got an evening social in a few weeks though but I’m not sure if I’ll be brave enough then...

[Aley]

🤣ha ha ALittlePixie! I was just taking some rather attractive selfies!!(Not) 😂and I think I’ve lost part of my eyebrow too!!!

[ALittlePixie]

Hey Aley
I've finished my FEC and started T and my head has def got some fluff growing, although one of my eyebrows have just disappeared!!! I look very attractive...not! 😂

[Jacqs]

Hi Everyone.  Hope you’re all doing ok.

A Little Pixie - I do hope you get switched to weekly treatments soon.  I was so worried when they said i’d Have to start weekly paclitaxel, but to be honest it’s so much more manageable than 3 weekly FEC and the SE’s are not as severe.  I’ve had some rib pain but nothing like you describe.  Sending you a big hug xx

Today i’ve been to have my blood tests for genetic test - will have results in 3 weeks.  If it’s positive, i’ll join a drug trial for women with BRACA gene & TNBC.  It’ll be 12 months on either a real drug or a placebo, but it’s peace of mind knowing they’ll be keeping an eye on me when chemo is finished.

Now I need to pysche myself up for going back to work for few hours tomorrow.  It’s getting so busy in run up to Christmas & am feeling guilty that i’m leaving everything to my OH.  Xx

[Jacqs]

Hi Everyone. Hope you’re all doing ok.

A Little Pixie - I do hope they get you switched to weekly Paclitaxel.  I was so worried when I was told they wanted me to switch to weekly treatments, but to be honest it’s been much more manageable than 3 weekly FEC.  I’ve had some pain in my ribs but nothing like what you’re describing.  Sending a big hug xx

Today was my blood tests for BRACA testing.  Now just got to wait 3 weeks for results.  If it’s a positive, i’ll join a drug trial at the end of my chemo for 12 months.  It’s for those with a genetic link & TNBC.  I won’t know if i’m on a real drug or a placebo, but it’s extra peace of mind that they’ll be keeping a close eye on me.  

Am now going to psyche myself up for going into work for few hours tomorrow to help my OH.  It’s getting so busy on run up to Christmas and i’m feeling guilty that i’m at home all day.  

Xx

[Aley]

Thanks Pulapula, just wish I could get a more accurate idea of what’s happening to le lump! 🤔Bit frustrating doing chemo first 😳 wondered if anyone else is getting hair growing between FEC cycles? I haven’t gone totally bald yet and there’s definitely growth between cycles..

[Pulapula]

Hi aley. I asked about the calliper measurements too and was told they aren’t comparable to mri or ultrasound measurements and usually measure bigger as it’s hard to identify where the lump starts and ends. So I wouldn’t worry about a few mms difference.

Sorry I can’t help with the FSH test. Think I had one but no idea what it was for or what it meant.

[Aley]

Hello Everyone
I’ve been a bit quiet recently..been ok just lurking! Got my fourth FEC on Friday saw oncologist today ahead of this. Does anyone else go through having their lump measured with callipers? I feel very confused as today she said it measured 3cm by 2cm..I don’t get it because on MRI it was 2.3cm!! I should have asked or said something but my list of questions/symptoms was sooo long today 🤔 Also I discovered that I’m neither HER2 positive or negative but borderline and they’ve requested a FSH test?! I have no idea what this means or what the implications are-all I can tell you is that it’s taking a very long time!!! It was requested early August!! Enjoy the rest of your week lovely ladies xx

[GabyF]

Hi everyone,

Had a new SE last night - felt very dizzy most of the night and when I first got up Had a long, hot shower, breakfast and then staggered into hospital for bloods etc. They checked me out, but everything seems as normal, so it's just another of those unexpected & unpleasant things, lovely!

LittlePixie: so glad they've identified what the problem is. Paclitaxel is not too bad at all (it's the carboplatin that gets me), so hopefully you should start to feel better very soon 

Met a former colleague this afternoon for a tea. She had Hodgkin's Lymphoma years ago and has been clear of that dreadful cancer for years. It was so good to see someone with a great positive story. We have to keep reminding ourselves that we will get through this and live a happy, healthy and long life! 

Gx