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August 2018 Chemo starters

Member

Re: August 2018 Chemo starters

Hi Sue

I must book a lbfg course, I was waiting until my eyelashes & eyebrows had gone so they could show in real time! There are quite a few courses around me so I should be able it get on one in one of my good weeks - hopefully!

Look forward to you reporting on the down there products!

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi all,

 

well I’ll I have survived my first T session. Not major side effects actual infusion, although I needed 4 attempts to find a suitable vein, they all had given up throug( the FEC cycle. Drs considered a PICC line but as I now only have 2 more left they really don’t want to put one in.

 

ill keep you updated on SEs. Feeling nauseas though at present, but I was really sick with FEC so not surprising I suppose!

 

Good luck to everyone else starting T this round. X

Member

Re: August 2018 Chemo starters

Hi Tarnia

 i had my 3rd FEC last tuesday my 1st T on the 16th, i have such a sore mouth G P has given me some Difflam mouth wash just something else to contend with. At least we are half way there. Good luck with your your 1st T keep in youch chin up. 

 

    LALA(linda)  xx

ktk
Member

Re: August 2018 Chemo starters

Hi Sue, LGFB is supported by lots of high street brand, including Boots, Clinique etc. If you go to one of those they will show you how to do your brows, put on false lashes etc. Maybe even give you some freebies!!! Still go on LGFB though!!! It is worth the wait 😁. Kx
Member

Re: August 2018 Chemo starters

Hi Jude

I've just booked on (or rather attempted to book on) to a 'Feel good look better' session to be told there's a 2-3 months waiting list. This is a bit of a downer as I was hoping to be taught how to makeup my eyes to compensate for lack of lashes.

I think you can order instructional CDs so might do that while I'm waiting for my number to come up!

I've read about YES but not given it a try yet. I'm currently using Replens MD which can be used all the time - not just when getting frisky 🤭. Will report back on the success or otherwise!

Good luck for tomorrow - hope the new regime goes ok

Sue xx
Member

Re: August 2018 Chemo starters

Hi Jo

please let me know how you get on with your first T. I had my 3rd FEC last week and my first T on 18th. I’m hoping the aching bones isn’t quite as bad as I’ve been told. But like you say one more done. Good luck for tomorrow.

Tarnia

Member

Re: August 2018 Chemo starters

Hi Jo

Good luck with the T - hope you get on ok with it, I’ve got my first one tomorrow. Not sure what to expect!

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Sue

Good luck with your next EC - hope you keep on having limited side effects
I’m starting to lose my eyelashes & eyebrows now, which makes me a bit sad ☹️ as I’ve always loved mascara - got a new eyeliner yesterday so need to start practicing!
I know what you mean about dryness down there, I’m post menopause so combining that with chemo!!
I’ve seen YES (corny name) recommended by several ladies so am going to give that a go!
Had my first herceptin today so am still sat on the ward in case I hsve any serious side effects, all good at the moment - first T chemo tomorrow

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi all,

 

just checking in to see how everyone is coping.

 

i have my first T chemo tomorrow.....feeling slightly anxious but it will be one more done! 

 

Best wishes all

jo x

Member

Re: August 2018 Chemo starters

Hello ladies

I haven't really posted in a while but I have been following the thread. Sorry to hear that some of you have been having a really rough time but it sounds as though everyone is steadily improving so that's good news.

I'll be heading into my 4th of 6 EC cycles next week. I'm intrigued that there are many different treatments being offered to us all and slightly bemused that someone may have similar diagnosis but be offered something slightly different. I guess this is down to the fine-tuning they do for each of us taking into account other health factors too but a part of me does wonder about the differences and if there might be a better treatment for me. I guess you just have to trust in your care team.

To date the EC hasn't been to harsh for me - a bit of nausea and fatigue ( now that's tempting fate as I head into round 4) a truly skanky tasting mouth, taste buds changes (I'm mean how can fresh fruit taste salty???) and hairloss. I eventually shaved my head this week - mainly so I could wear my wig with confidence - and after weeks of looking like Golum it was a bit of a relief.

My wiggie look has been met with exclamations of delight and how fab it looks and more than one comment that I should adopt that style when my own hair comes back as it really suits me!!!! Not sure what that says about my previous look 😂.

Because I know it's a wig I was really conscious the first few times I ventured out - convinced that it would slip or get brushed off or that there would be double takes and nudging from strangers as they passed me by but that hasn't happened - I'm presuming that's because it doesn't actually look like a wig rather than because I've developed a superpower and become invisible!

I think my eyebrows and lashes are starting to thin - as I'm quite fair it's not hugely noticeable right now but I'm sure going to look weird if I can't use mascara any more. I've also found that my armpits are bare but my knees are still furry and other body hair started to thin around the time I started to lose hair on my head but that seems to have halted so I'm hoping my eyelashes won't go completely!

One thing that is driving me nuts (and as no one else has mentioned this I'm choosing to believe it's because you are all too polite rather than because I'm the only one!,) is a significant drying in my lady bits. Not entirely sure if this is because of chemo or menopause or a combination of the two. I'm having a challenging time finding something that helps other than for short term relief and this has lead to some quite frank discussions with my GP and oncologist! I live in hope I'll find something that will help.

Well I've rambled on for long enough - enjoy the last of the sunny weather - if you believe the tabloids we'll be knee deep in snow this time next week! Still at least the hot flushes will come in handy if that's the case!

Hugs and love to all

Sue xx

Community Champion

Re: August 2018 Chemo starters

Hi Ladies, I hope you are all doing well. x

 

Right now the government has extra funding to allocate and we need to make sure breast cancer gets the priority it deserves. I've shared my story, please share yours:
https://breastcancernow.org/get-involved/campaign-with-us/take-action-now/55000reasons

Member

Re: August 2018 Chemo starters

Hi Georgie

Well done on getting home, I hope you are starting to feel better
Good news on the herceptin & chemo bring moved out a week, hopefully you can rest up & build up your strength. Mentally the extra week should he’ll as well

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Georgie - great to hear that you are home at last. Rest up and take care. 🤗
I will be with you on 12th Oct as also starting Herceptin and T on that day.
Cat x
Member

Re: August 2018 Chemo starters

Hi everyone, 

 

Pleased to report that I am now home, infections cleared up but still in a bit of shock about the blood clot.  

 

Doing my own injections for thinning blood, but I don't know when that will end. 

 

They have put back back herceptin and first T a week, so will start on11th and 12th instead next month. 

 

So so tired.  

 

Love to you all 

 

Georgie Gee xxxxx

Member

Re: August 2018 Chemo starters

Hi Jude - No need to apologise, chemo brain gets to us all! Yes they did say I would have Herceptin then at least a 3 hour wait before chemo so I will prepare myself for a long day. I am having Paclitaxel rather than Docetaxel, for 9 weeks. And yes please, let me know how you get on. Good luck!

 

Hi Georgie – I hope you are being well looked after and are home in your own comfy bed very soon.

 

Hi Caroline – good luck with your results.

 

Take care everyone

 

Cat x

Member

Re: August 2018 Chemo starters

Hi Caroline

How did you get on today? Do you feel any more comfortable with your treatment plan?

Jude x
Member

Re: August 2018 Chemo starters

Thanks Jude

I’m pretty sure I’m not having herceptin and I’ve read quite a lot about the possible affects on the heart. I’ll definitely ask some questions. That’s if the MRI shows the EC has done it’s stuff and it’s definitely more chemo!
Member

Re: August 2018 Chemo starters

Hi Caroline

Unfortunately there don’t seem to be many good stories on docetaxel 😂but it is a 3rd generation chemo drug & is pretty badass to those pesky chemo cells
I’m starting it next week along with herceptin - are you having herceotin as well? They don’t generally give herceptin with EC as the E element can effect your heart as can the herceptin so they don’t give together
Maybe you need to check with your oncologist as to why they are suggesting it
Good luck

Jude x
Member

Re: August 2018 Chemo starters

Hi Georgie

Good news that the infection has cleared up
The blood clot on your lung is a little worrying I would imagine but at least it’s been found & they can treat it
Fingers crossed that you get home soon

Jude x
Member

Re: August 2018 Chemo starters

Georgie. So sorry to hear about your latest development. Have they told you how long you’ll be on the blood thinning drugs?
I’m sure you will be happy to be home. Take it easy & wishing you a speedy recovery x
Member

Re: August 2018 Chemo starters

Good evening ladies. I haven’t checked in for a while.
I had an MRI on Monday and see the oncologist tomorrow to see if the tumour has shrunk so more chemo or if not discuss surgery. I’m on EC I think that’s what it’s called at the moment but I think they will want to move me to Docetaxel. I don’t know why but I’m pretty concerned about that move. I think it’s because fingers crossed, apart from tiredness I’ve been ok. Anyone have some good stories about Docetaxel ot anyone refused to have it and to continue on the EC? Thank you.
Member

Re: August 2018 Chemo starters

Hello all,

A mixed day here at the hospital!

 

My antibiotics have ceased, as the infection is gone. 😍😍😍

 

Went for a chest scan today and they found a blood clot on my lungs. 😫

So in a nutshell, they will start blood thinning drugs later this evening, and test blood again tomorrow. If the platelets are ok, I can go home 😃.

 

All a bit of a whirlwind if I'm honest!!

 

And chemo has been delayed for a week, which I am very pleased about..... I need to get my breath back!!

 

Love to all!

Georgie Gee ❤️

Member

Re: August 2018 Chemo starters

Sorry Hi Cat!!

Chemo brain x
Member

Re: August 2018 Chemo starters

Hi Sue

Hope you start to pick up soon from your last cycle!

With regard to the herceptin & T on the same day, be prepared for a long day as they might give one then wait a few hours before the other
My oncolonist had said that if you get a reaction (which is more likely for the first time), they like to know which drug has caused it - hence on 2 separate days

I’ll let you know how I get on - not looking forward to it but halfway there now 💪

Jude x
Member

Re: August 2018 Chemo starters

Hi Lovely Ladies,

 

Georgie and Jacq’s – so sorry to hear about your hospital visits, you are not having the best of luck ladies……but I am sure that will change! Sending you lots of hugs and hoping you both feel better very soon.

 

Jude – I’m still feeling icky after my third FEC on 21st Sept but at least it was the final one, I move to Herceptin and T on 12th Oct. Interestingly I am booked in to have my first Herceptin and T on the same day rather than consecutive days like you.

 

I’m also feeling the cold especially on my head so sleep hats turned out to be a good buy! And thanks for all the top tips to keep well moisturised.

 

Take care everyone

 

Cat x

Member

Re: August 2018 Chemo starters

Thanks for the tips ladies!

Sue x
ktk
Member

Re: August 2018 Chemo starters

Oh yes I forgot that you put olive oil on baby’s cradle cap. Good tip!!
Member

Re: August 2018 Chemo starters

Hi Sue
I got a revolting sort of cradle cap on chemo & was told olive oil by the lady at cancerhaircare. You just massage it in very gently. Sorted my dry scalp out x
ktk
Member

Re: August 2018 Chemo starters

Sue Moo Goo is good, available from Amazon, but top recommendation is to get your GP to prescribe Doublebase. Make sure your have filled out the free prescription form! Your face moisturiser is good but I think it needs something a bit more industrial. My skin has got drier with each cycle so I am slathering Doublebase on everywhere! It feels a bit greasy at first but is stopping the flaking and is free!!! Kx
Member

Re: August 2018 Chemo starters

Hi Ladies

Sue - I’ve been using a baby shampoo for the last couple of weeks & my dry patches have all gone, so might be worth a try

Georgie - it’s going from bad to worse for you!
Hope they get you sorted quickly & that you cope ok in hospital, at least it should be quieter in isolation - thinking of you x
I’ve seen my oncologist today & am having herceptin on Monday - you have to be monitored in hospital for 6 hours after the injection for the first one! I then go back the next day for the T!

Jacqs - you’re having a tough time as well, your timescales sound tricky, 6 months to get sorted - thinking of you x

Hope everyone else is ok - take care

Jude x
Member

Re: August 2018 Chemo starters

Hello ladies

Does anyone have any tips on what I can use on my scalp - it's quite dry at the moment. Wasn't sure if to use face moisturiser or body moisturiser or if there is something out there more suitable? I've read about olive oil or almond oil - has anyone else used either of these?

Thanks in anticipation,

Sue
Member

Re: August 2018 Chemo starters

Aw Georgie - sounds like you’ve got same rotten luck as me.  I was admitted to hospital on sat evening after initiallly been sent home on Friday.  Turns out it wasn’t neutropenia.  I had blood clots on my lungs & pleurisy.  Lots of antibiotics, blood thinning injections for next 6 months & a shedload of painkillers.  The suspected infection in my central line may not be as serious though but will know for sure on Friday when blood cultures come back.  

Love & hugs from one unhappy bunny to another.

Thank you all for your get well wishes xx

Member

Re: August 2018 Chemo starters

Oh Georgie 

 I am so sorry to hear your new's not having much luck at all Thing's can only get better keep your chin up.

 

 lot's of love and hug's 

 

LALA (Linda)xx

Member

Re: August 2018 Chemo starters

Hi sunflower

       i have found that over the last few day's i have felt the chill and like you it is in the evening. i sat with a water bottle last night bought a little comfort. Make's me wonder what we will be like in the winter. I had my 3rd cycle oe fec today so looking forward to a couple of  sleepless night's.

       keep safe

 

          LALA(Linda)xx    

ktk
Member

Re: August 2018 Chemo starters

Oh Georgie. They sure know how to kick you when you are down. Bet you picked up the MRSA in hospital! At least you won’t be in a ward of snorers and Mia nets. Keep your pecker up. We are all with you and rooting for you. Lots of love Kxxx
Member

Re: August 2018 Chemo starters

So sorry to hear that Georgie - hope they get you fixed up quickly

Sue x
Member

Re: August 2018 Chemo starters

Hello Sunflower

I was like this for a few days a couple of weeks ago but it did pass after those few days - not sure what it was or why. My temp was also ok - was just cold and couldn't get warm. I just wrapped up - went a bit mad and bought a couple of fleeces with high necks and so far I've not needed them. Sod's law I think that's called.

Sue x
Member

Re: August 2018 Chemo starters

Morning all, 

 

The doctors came to my bedside with aprons on yesterday and told me that the mystery blood causing the query, has tested positive for MRSA.  

 

This is of course means that for the moment at least, I need to settle in and call my isolation room home. 

 

I was really tearful yesterday but coming coming to terms with it today.  The antibiotics for the sepsis were not covering the MRSA, hence the extra one, which is pumped in IV by the nurses once a day, like some of the chemo drugs are.  They think it may be in my mouth / throat / downwards.... may have some tests.  

 

Georgie Gee is not a happy bunny 😷

Member

Re: August 2018 Chemo starters

Hi Jo

It’s mainly my bald head that gets cold 😂
Particularly at night, I really do need my sleep hat!

Keep an eye on your temp as you could be coming down with something

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi all,

 

Georgie and Jacqs -sorry to hear you are not so good at the moment. Sending you best wishes. x

 

Is anyone currently suffering from feeling the cold, especially in the evening?

i just can’t seem to get warm.  My temperature is good and I feel ok, just cold!

 

Jo x

 

 

Member

Re: August 2018 Chemo starters

Hi Georgie
Sorry to hear you are in still in, hope your bloods come back ok or are easily resolved
What is that Vaseline business about? Good luck with that!
As you say your next cycle will be probably be delayed, providing that you go ahead of course - big decision for you

Hi Jacqs
Sorry to hear you are in as well, hopefully they can get you stabilised & get you home ASAP

Take care all

Jude x
Member

Re: August 2018 Chemo starters

Jude, 

My thoughts are the same.... I certainly don't think I will be starting it on 5th of October, or herceptin on 4th.  I need a break before I start anything else.  

 

Georgie x

Member

Re: August 2018 Chemo starters

Aww Jacqs,
Sorry you are 'inside' as well..
it depends on how long your neutrophils take to go up again.... and I think they look at how much antibiotic treatment you need too. I was 4 days last time, but if you've seen my more detailed reply, this might be different again. let us know how you're doing.
Georgie
Member

Re: August 2018 Chemo starters

Hello from hospital, night 3 😐

 

And thank you all for kind words and wishes.

I'm in a quiet ward, which is a nice little extra, but no nearer to the exit route.


Still having IV antibiotics for sepsis, but today was hunted down by the blood labs, as I have something 'unusual' 🙄 (trust me!!) growing in my blood from Friday night.

 

So had another load of bloods taken today, and I'm sure the junior doctor was young enough to be still wearing his school trousers..... he asked ME what I thought my swollen mouth and tongue would benefit from. I actually cannot open my mouth wide enough to say the obligatory 'aaaah'. I said, 'well hopefully something to soothe the swelling and pain'. He actually suggested Vaseline 😳. I mean 😳😳😳!!

 

My neutrophils have risen, but they have added another IV antibiotic to the mix now, and are saying this may need to be given for another 10 - 12 days, depending on the result of the wierd blood tests. So it's mouthwash, earplugs, sleep hat drawn downward to shut out the hospital lights (good tip, that one.....😜) and hopefully some answers in the morning.

 

Night night, and don't forget to put your Vaseline on your sore mouths......😬

Georgie Gee x

Member

Re: August 2018 Chemo starters

Hi Georgie.  I was admitted last night & am being treated for neutropenia sepsis & pleurisy.  Can I ask how long it takes for symptoms to ease.  Like you it isn’t best place to be - it’s chaotic & so noisy even in middle of the night. I’m from September thread - hope you don’t mind the questions & hope you’re starting to feel little better. Jacqs xx

Member

Re: August 2018 Chemo starters

Don’t know what to say Georgie, you are having a really shocking time of it
Just read through the June thread, I’m not sure I’d want to have T if I was you but maybe you need to talk to your oncologist & assess all the pros & cons & the herceptin impact
Hope they don’t keep you in too long & you start to feel better soon - thinking of you
Jude x
Member

Re: August 2018 Chemo starters

I'm back in casa NHS.  

Neutropenic sepsis has returned.  Neutrophils score is 0.3.  Just posted more on June thread..... so sick of this and am on a ward of 6 old ladies who shout.....  

 

not  appy     😢

Member

Re: August 2018 Chemo starters

Hi Ladies

Hope you are all ok

Georgie - yes I’ve seen your info in the polybalm but am dithering a bit. I’d just had shellac on my nails (the day before you posted) & as they are not growing I’m hoping they will keep for 3-4 weeks & then I’ll have them done again. So may not be worth getting the polybalm...
Not looking forward to the T & herceptin & lije you can’t wait to get through it
Saw the radiotherapy consultant yesterday, rads will start on either Friday 30th nov or Monday 3rd dec - either way finished by 21st dec. Rads planning day 16th nov as they need 2 weeks prior to start date? Obviously dates based on no infection / delay with chemo
If I can get finished before Christmas I will be made up!

Cat- good luck with the chemo tomorrow, hope you cope with the ses ok. Are you then going onto T?

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Lovely Ladies,

 

Georgie – sorry to hear you’re having a rough time – hang in there!

 

Purplebarb – welcome to the August monthly thread – it is !definitely a great place for sharing and caring!

 

I’m having my third (and final) FEC cycle tomorrow so if my last two cycles are anything to go by I am in for a grim week….I will expect the worse and hope for the best!

 

Take care everyone

 

Cat x  

Member

Re: August 2018 Chemo starters

Thanks Jude. 

 

I will be interested to see how you get on with your T cycle.  Glad your side effects are better this time generally.  The sooner all of this is over the better.  Have you seen my posts on the polybalm cream? 

 

I cant wait for all of this to be over.  

 

Stay well! 

 

Georgie x