August 2018 Chemo starters

[LALALAND]

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]

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

[SB1610]

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

Sue x

[SB1610]

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

[Georgie Gee]

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 😷

[Jude1962]

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

[Sunflower18]

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

[Jude1962]

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

[Georgie Gee]

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

[Georgie Gee]

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

[Georgie Gee]

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

[Jacqs]

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

[Jude1962]

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

[Georgie Gee]

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     😢

[Jude1962]

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

[Cat67]

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  

[Georgie Gee]

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 

[Jude1962]

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

[LALALAND]

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

[Georgie Gee]

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 

[Purplebarb]

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 💕💕💕

[Jude1962]

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

[Cat67]

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

[Jude1962]

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

[Cat67]

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

[Georgie Gee]

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/

[Jude1962]

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

[Cat67]

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

[Jude1962]

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

[Georgie Gee]

Sorry, 

I just wanted to correct myself when I said about black nail varnish........ I am going to check with the chemo nurses tomorrow that nail varnish can be used alongside Polybalm treatment.  

Thanks 

G G xx 

[Georgie Gee]

Ladies, 

I have just looked up Polybalm.  It is quite expensive at £39.50 for a pack of 2 tubes, but that is deliberate, as they recommend one for your hands and the other for your feet to avoid cross infection. 

I am am going to buy some, as I don't think I would be able to cope with nails going funny as well as so much of the rest of me!  The black nail varnish is also recommended by my oncologist too. 

G xx

[Georgie Gee]

Thanks ladies for advice....

Judy, sorry you're  still having the nausea.  It's so horrid isn't it 😩.  

Thanks for the info on the heart scan.  I think I'm having one too now. 

I saw my NEW oncologist today, and have to say it was like seeing an actual oncologist for the very first time!!

She listened, asked me about S E's, showed me what nails can get like on T by googling it with me!! And changed some of my drugs for last FEC tomorrow, plus so much more! 

Asked me about when the bone protection IV had started, and was shocked that I hadn't had any yet! 

Asked about 'when' I was having my ECG for starting T, and again was really surprised I hadn't had one, and filled in a request form for one straight away.  

I hadn't signed consent for T or herceptin either, or had info sheets, so again she was very surprised, and we did it all today. 

So very very pleased with this oncologist.  She also said that there had been a trial on a nail cream called polybalm, and recommended it for T.  Said it is available online. 

I feel I may have turned a corner now, and that I have expert help from an oncologist who wants to be one!! 

So tomorrow's chemo looms, but I feel more secure now. 

Lots of hugs everyone 

Georgie xxxxxx  

[Jude1962]

Hi Georgie

Regarding scans - I've just had a call from the hospital asking me to go for a cardio rest test next week. Apparently they inject you with radioactive dye & then test your heart - takes about 4 hours! Presumably this is to check heart is ok prior to T & herceptin as I have heard that herceptin can effect your heart

Jude x

[Jude1962]

Hi ladies

Georgie - It doesn’t seem to be getting any easier for you. Well done on changing your oncologist I hope this one works better with you. I shaved my head but have odd little bald patches - I just started to use a very small amount of baby shampoo which seems to stop it feeling sore & dry. I’m seeing my oncologist in a fortnight but not aware that you have any mid chemo scans but mine hadn’t spread to the lymph so may be different for you. I’ve not been sick this cycle so that’s a plus point but have felt very rough with terrible nausea - hopefully will start to improve tomorrow

Multitasker & Jo - sorry to hear you are feeling down & out of sorts,it’s hard to be upbeat all the time & I think you just have to go with however you are feeling. I worry that at the end of treatment I will have a total meltdown as I’ve not really got upset although I do have an odd quiet day. I do find chemo brain is kicking in though!

Lala - sorry to hear of your issues, I suffered terribly with heartburn on the first cycle so they prescribed lansoprazole which really helps. Hope you start to feel better soon

Take care all - sleep well

Jude x

[Kathleen77]

GO ON TO THE BBC RADIO PLAYER SELECT 5 LIVE AND THEN PODCASTS IT WILL BE LISTED THERE.

[LALALAND]

Hi ladies 

8 day's since cycle 2  feeling pretty much yuk. Bad night with heartburn and now my mouth is sore but no ulcers also a slight sore throat. 

   love to you all keep your chin's up, tomorrow WILL be a better day

LALAXX

[Sunflower18]

Hi all,

I have just had my third and final FEC and as you have said Georgie that red stuff makes me feel sick, even just thinking about it. 

I am also feeling really down the last few days. I completely lost it in the chemo unit yesterday, heaving, feeling sick, and in floods of tears. Just felt like I couldn’t continue with it. I don’t know why but even though I am half way, mid Nov seems along way away and I suppose radiotherapy for 4 weeks after that.....I totally agree with your comment about staying positive! It is really hard work staying positive all the time. I try to for my kids(16 and 13) but sometimes I think it is good to have a damm good cry!,

Multitasker- I didn’t cold cap but still have hair, very patchy but like you I shaved it to a 4. It’s too patchy and fine to go without my trusted wig but I am putting it down to the fact I had quite a thick head of hair in the first place. I think whilst a lot do completely loss hair some do keep small amounts. However, I am sure more will fall out before I am finished.

Take care everyone.

Jo x

[Multitasker]

Hi folkloricos

Hope chemo goes OK today Caroline. My third EC is due on Friday, I coldcapped for the last 2 but I would say 75% of my hair has fallen out. May still go ahead witht the cold cap. Its definitely helped bc where it didnt fit right the first time (newby mistakes) it has fallen out completely. 

Quick ‘heads up’, AVEENO is a third off at waitrose at the moment. Bought several tubes to stock up.

Georgie, I hope everything goes well with the new oncolgist. Your Picc line seems really troublesome but hopefully it will start getting better with different dressings? It sounds such a lot to deal with as well as just surviving the chemo treatment. Lots of hugs.

I’m feeling really f**king miserable with myself today. Woke up early and cant stop thinking about chemo on friday (3rd out of 4 EC, with 4 more taxotere to follow) The treatment just looks never ending. Just the thought of going to the hospital to have that toxic **bleep** pumped in my veins and feel so crap for (albeit only) 4 days and then slowly build up strength to do ot all over again just seems like the most miserable version of groundhog day.

Generally I have been coping so well, seeing friends and family, getting on with life, expert at sick humour jokes, supporting others at a couple of groups. Not sure what has set me off today.

Sorry for the moan, I will have strong words with myself......but if anyone I bump into today says ‘keep positive’  I might just explode!  Or maybe it would be kinder to just point them towards Rachel Blands blog, as she says some pertinent words about that throw away comment!😀

[Georgie Gee]

Hi everyone, 

Thought I would give an update on my various issues..... 🙄 Trust me to get them! 

I went for my pre chemo check up and bloods today, and all is apparently good for Thursday.  Whenever I think of the drugs (particularly the red stuff going in (part of FEC) I feel sick.  But this will hopefully be my last ever FEC, so onwards I must go, as we all must!  

Picc line dressing was also changed today, and the nurse saw how sore I was where the plastic dug into the inside of my elbow, and it was also decided that (as I had thought....) I am allergic to the dressings, and that liquidy square bit around the line actually going in to the vein.  So no wonder I've been in a mess with that arm.... sigh..... 

as ever, I still blame the first oncologist for not listening to me about a port being by far the better option for me, as I had told her abut all of this in my first appointment.    I have the new dressing on today, but where the liquid bit was, I am now very itchy 😩........ so desperately hoping I'm not in trouble with this one too! 

I get to meet my replacement oncologist on Wednesday, as I successfully got a transfer.  I see from another thread that others too have had to swap to a Dr who actually listens and doesn't mind answering questions!!!  

I am told by the head breast care nurse that the 2 lady oncologists are friends outside work, so I hope this isn't going to be awkward.  The one I had before was new, and very defensive when I took a breast care nurse in with me last time.  I think she must have had the same kind of issue before.  Wouldn't surprise me. There are so many things I want to ask my new one, who is apparently lovely.  

Has anyone else still got a bit of hair in patches after 2 FEC rounds?  I didn't shave mine, but my daughter took it down to a number 4 very short cut with clippers.  Because of skin allergies I was scared to shave it, so now I have a very much thinned out covering of white hair left, with some bald areas and then little patches of hair.  Like others I have worried that perhaps the treatment isn't working any more..... I expect it is, but sometimes I wonder.  

Another question; does anyone know whether we get any scans part way through chemo, to see whether there are any changes?  If I were an NHS boss, I think I would say we should.  Just for reassurance, but also to catch anything early which might be lurking (my tumour was grade 3 invasive and already in lymph nodes). 

All the best to others in the chemo boat with me this week.  Judy I so hope your nausea subsides.  It's so horrid feeling like that for days isn't it... 🤢

Lots of love to you all.  It's so great to have one another isn't it.  

Georgie Gee xxxxxxxxx

[Jude1962]

Hi Ladies

Hope you are all coping with chemo, ses & the good week!

Had my 3 chemo of EC today - bloods were ok neuts up slightly to 1.37. Starting to feel nauseous now though, have the sick bucket by my side just in case - could be a long night!

Hi Jo & Cat
I’ve heard a lot about T so we will have to wait & see...think peripheral neuropathy can be an issue with T
Mine starts 1st October & I’m starting 1 year of 3 weekly herceptin with it.
I’m seeing the radiotherapy consultant next week to discuss life after chemo 😂 & am seeing the oncologist to confirm the T 25/9 - so busy few weeks!
Hope you are not struggling too much & good luck with the ses

Jude x

[Cat67]

Hi Lovely Ladies,

I haven’t been on line for a while…..day 11 of my 2nd FEC cycle and just starting to feel close to normal (whatever that is nowadays!) SEs were similar to last cycle, the horrible nausea subsided very slightly earlier but the tiredness definitely worse.

It’s been great catching up on all your posts.

Georgie and Judy – I will also have Herceptin when I start T so interested in discussions on this point. I’m slightly behind the 2 of you, if all goes to plan I will have my 3rd cycle of FEC on 21st Sept and 1st cycle (of 9) of T on 12th Oct.

Georgie – I hope you got your PCC line sorted.  

Caroline – welcome to the group!

Wishing everyone a great week, whether you’re having chemo, managing SEs or enjoying some good days!

Take care,

Cat x

[Sunflower18]

Sorry Good luck.....chemo brain kicking in early today x

[Sunflower18]

Hi Jude,

God luck with number 3. Hope bloods are good to go!

Do you go onto T after this ?

I will be. Not sure how I feel about it as it seems to be the worst one. Only things I have read on dreading google mind you! One of my friends had T and didn’t really notice much difference, so I suppose it willl hit us all differently.

x

[Jude1962]

Hi Caroline

Welcome to the club no one wants to join!
Good luck with the next cycle on Tuesday,hope all goes well

Hi Jo
My 3rd cycle is tomorrow providing my blood tests are ok, they didn’t have them back Friday afternoon so have to phone 8.30 in the morning
Good luck with your chemo, hope the ses are minimal

Jude x

[ktk]

Linda you don’t need iTunes you need iPlayer, the BBC app for the podcast. Hope that helps. Kx

[Sunflower18]

Caroline,

Welcome.

Good luck with the chemo on Tuesday. I’ve got my third round on Monday.

Hope you manage to have a good weekend.

x

[Linda Corinne]

I am unable to download itunes to watch the podcast. I havd tried afew times. Did anyone else have trouble doing this or can anyone help? Ta.

[Carolinenaidoo]

Hello hope you don’t mind me joining.

I’m due my second lot of chemo on Tuesday. I’ve breast cancer and my first chemo was better than I thought it would be. I cold capped but after a sore scalp last night I seem to have handfuls if hair coming out today. I think I’ll see how much has come out by Tuesday morning and decide whether it’s worth cold capping again.
I hope you all have a nice weekend.

[Jude1962]

Hi Kathleen
Well done on continuing & finishing the chemo it’s a tough gig. It’s good to hear that there is light at the end of the tunnel
I really hope Deborah & Lauren can keep the podcast going as it has been great therapy for me over the last couple of months

Take care

Jude x