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August 2018 Chemo starters

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 

Member

Re: August 2018 Chemo starters

Hi Georgie

You poor thing - you’re not having a lot of luck with this chemo malarky

Take it easy & try & rest up

Hope you start to feel better soon

Jude x
Member

Re: August 2018 Chemo starters

Hi Georgie

        sorry to hear about your A&E trip and i hope you are feeling a lot better now, chin up love is all around you. xx

Member

Re: August 2018 Chemo starters

Hi Everyone,

 

Well it was a second time for me at A & E yesterday night.

 

temp climbing all day and eventually went in at 10.30pm (kept hoping it would settle)....... you know what it's like.  

 

Got home at 2.30 after arm full of blood tests, antibiotics and fluids.  Neutrophils ok but they did find a wee infection so have giant antibiotics to take. 

 

Exhausted but safe.  

 

Georgie xx 

Member

Re: August 2018 Chemo starters

Hi Ladies thanks for link to Polybalm and I’ve ordered some so see how it goes! Will report back. I feel like I’ve found somewhere I can share this c**p and not pretend I’m coping with it all!! I just keep losing the thread I’m following but perhaps that’s chemo brain. Love to all in this fight 💕💕💕
Member

Re: August 2018 Chemo starters

Hi Ladies

Hope you are all ok & coping with the ses
Other than still feeling tired & very shaky, my ses have been minimal this cycle
I had my cardiac rest test today & should get my results next week when I see the oncologist. The technician/nurse who did the scanning said the test would be repeated every 2-3 months for the duration of, in my case herceptin?

Take care all

Jude x
Member

Re: August 2018 Chemo starters

Hi Jude,

 

Yeah unfortunately you can't have it done during chemotherapy. A lovely lady squeezed me in to her busy schedule when I told her about the time pressure, she had also been treated for breast cancer recently so completely understood.....and she also gives a discount to her clients with cancer.

 

Let me know how you get on with LGFB, I'm sure you will enjoy it and they will show you how to do your eyebrows :-)

 

Take care, Cat x

Member

Re: August 2018 Chemo starters

Hi Cat

Glad you found the look good feeling better course useful - I’m going to contact my local one next week.
I wish I’d thought about the microblading prior to chemo as I’ve been told you can’t have it done when you are having chemo due to the risk of infection?

Looking forward to a lovely goodbag from lgfb!

Take care

Jude x
Member

Re: August 2018 Chemo starters

 
Member

Re: August 2018 Chemo starters

Hi Georgie,

Great that you have had your final EC and good luck with the SEs - I hope they are kind to you. Thanks for the info on Polybalm, I think I may give it a go too.

 

Hi Jude,

I went to a Look Good Feel Better session on Wednesday. The nearest one to me was about 45 mins away but well worth the travel. They go through a step by step process of removing and applying makeup, including eyebrows which I think make a huge difference to framing the face (I cheated and had microblading before I started chemo!). Plus you get a great goody bag of skincare and make up products - what's not to love!   

 

Take care everyone!

Xxx

Member

Re: August 2018 Chemo starters

Spoiler
 

Hi Ladies,

 

had my final FEC today - glad it's over!  Now for the joys of S E's 😫.......... 

 

I asked the nurses about the black nail varnish use with ppolybalm, since the hospital I go to took part in the trial. They said that as long as you start using polybalm straight away on starting T part of chemo, it should work well, applied 3 times a day, without using black varnish.  One reason for this is that the varnish removers, which would presumably dry the nail out, would spoil the benefits of buying the polybalm, as over the 9 or 12 weeks on T, you would be bound to need to remove it from time to time? 

 

However, I am also aware of so many people saying about black nail varnish being brilliant..... without a mention of polybalm, possibly because the study and sale of it are quite recent. 

 

I have included a link that I looked at.  Hope it helps.... after reading a great deal about the polybalm trial, I am going to give it a go.  Even though it is £39 for two tubes (one for feet and one for hands to avoid cross infection), and should last the whole course, I figured that the nail varnish and remover over that period would possibly cost similar for 20 nails for 9 or 12 weeks.....  

 

I am going to post the info about this onto other recent monthly threads, to see whether anyone else has tried either method, especially polybalm,  and I will report back.  😊

 

here's the link. 

 

http://polybalm.com/nails-chemotherapy/

Member

Re: August 2018 Chemo starters

Hi Cat

Hope your next cycle goes ok
My eyelashes are just starting to go now particularly the lower lashes but eyebrows are still intact at the moment
Might have to find a look good feel better course near me to work out how to manage my makeup!

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Lovely Ladies,

 

Georgie – so so pleased to hear about your new oncologist – what a difference! Thanks for the advice about polybalm, will be interested to hear about wearing dark nail varnish whilst using it. I shaved my hair very short, it is still patchy but I am sure more will fall out. I have kept some of my eyelashes and eyebrows so wondering when I will lose them…

 

Jude – I haven’t been asked to go for another heart test ahead of Herceptin/T but I did have a test prior to staring FEC. Seeing my Oncologist on Monday so will add it to my list of questions! Glad your nausea is improving, I hope my 3rd FEC cycle isn’t as bad as the first 2 either!

 

LaLa – hope you’re starting to feel better very soon.

 

Multitasker & Jo – sorry to hear you have been feeling low, I hope you start to perk up soon....I think it’s normal to have ups and downs so I think lets go with it and not beat ourselves up! :-)

 

Take care lovely ladies,

 

Cat x

Member

Re: August 2018 Chemo starters

Hi Georgie

My nausea is improving so fingers crossed this 3rd cycle could be the best one so far for ses
Hope your chemo goes ok today
Sounds like your new oncologist is very good, I’ve not heard of polybalm but had been told about dark nail polish
I’m seeing my oncologist the week after next to sign the consent forms presumably when the cardiac rest test is back

Good luck & take care x