August 2018 Chemo starters

[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

[Kathleen77]

Hi I completed chemo therapy in April 2018 during the initial treatments I was quite unwell family feared I wouldn't continue with the treatment .Days seemed endless and I thought April 2018 would never come I persevered I got through it with the help of family and Rachel Bland and her friends they were an inspiration to me and probably thousands of others.I just wanted to say stick with it you will get back to experiencing fun days and feeling normal.If anyone out there hasn't listened to You me and the big C give it a go its a friend through those dark lonely hours when everyone else is asleep.

[Jude1962]

Hi Jo

I know exactly what you mean with regard to Rachael Bland - I’ve been listening to the You, Me & the big C podcast for the last few months & have laughed & cried with them. It’s very very sad & I was quite upset on her death but have took on board their mantra they whilst it’s ok to have a bad day, always remember that life is for living!
My 3rd chemo is also Monday - the sooner it comes the sooner it’s over with!

Good luck next week

Take care

Jude x

[Sunflower18]

Hi all,

Just thought I’d check in to see how everyone is doing. 

I am pleased to say that I have actually had a good week physically although a little emotional yesterday when everywhere I turned where pictures and stories about the Radio 5 presenter Rachel Bland. I know everyone’s cancer is different and our treatment is tailored to us as individuals but hearing about it really hit me hard yesterday, especially at 2am when I couldn’t sleep!

sometimes the emotional side of things is so much harder than the physical journey.

i saw my oncologist yesterday and bloods are all ok, so round 3 of FEC on Monday. Strange, I really don’t want to go through it again but in someways pleased that all is ok to go again! Does that make sense?

I think mentallly it is because I will be half way through the chemo treatment which is massive milestone. I cannot believe I am half way through but in other ways mid Nov when I am due to finish seems a long, long way away.

Hope you are all doing ok

Best wishes 

jo x

[LALALAND]

Hi Georgie Gee i had my PICC line in on Monday  and the anethestist doc cut that plastic piece off because of that reason.

Sorry that you are having problem's, i have a lot of bruising  but it does'nt sound as bad as your's i think because of the inflamation you should get in touch with the hospital sooner rather than later good luck let me know how youget on.. love and hugs xx

Spoiler

[Georgie Gee]

Just wondering whether anyone else has noticed any bruise - type pain in the PICC line arm?

I have one of the small plastic parts attached to the line which is digging into the inside of my elbow.  It is getting red and inflamed.  Then further down towards my wrist, following a defined area of bruised sensation.  No redness around this part, just the pain.

I may call the hospital tomorrow.   Oh dear.  Never wanted this picc in the first place 😩.

[Jude1962]

Hi Georgie

We can tread the different path together!

Will be interested to hear what your oncologist says if you discuss

Not looking forward to next week...

Take care

Jude x

[Jude1962]

Hi Lala

Brave move shaving your head but all the itchiness will go & you will feel better than it all falling out constantly! Insomnia is tricky, don’t think I’ll ever sleep properly again!

Hope other ses are minimal

Jude x

[LALALAND]

Good morning ladies as you can see not a lot of sleep, went to bed did try but gave up after an hour or so. Got up cleaned hob hubby tries his best just having a cuppa and catching up on holby. xx

[LALALAND]

Good evening ladies, had my 2nd cycle this afternoon, not feeling too bad although wide awake. I braved the shave when i got back a bit of an emotional rollercoaster but i am glad now that it is gone, i knew it was going and to be honest my head was so uncomfortable i just knew the time was right. Inner strength there when we need it we just have to use it. Eh enough of this serious stuff, let's all go to bed with a smile.

nite nite love and hugs

[Georgie Gee]

Hi Judy, 

I have my last FEC on 13th September and 1st T on 4th October.  So about 3 days between us... 

Georgie

[Jude1962]

Hi Georgie

I’ve got my 3rd EC next Monday & then 3 cycles of T & herceptin starting on Oct 1st

What’s your timescale?

Jude x

[Georgie Gee]

Thanks Judy. 

When do you start this? 

[Jude1962]

Hi Georgie

I’m starting herceptin with T as well
My oncologist gave me a macmillan fact sheet on herceptin which you can read online
There are quite a lot of general side effects but I believe that the main concern is that it can effect your heart but could be worth discussing with your oncologist

Judy x

[ValGJ]

Hi, it’s really interesting what you say about probiotics as I’ve been taking mine as I normally do, I never thought to ask if they were ok. They have stopped me getting constipated so I was hoping it was a good thing!
I take back all I said about having energy and few SE’s on cycle 1, this round has been much harder, I’m not normally a cryer but everything sets me off at the moment. Particularly the hair falling out in handfuls. Still coming into week 2 now so hoping for some better days.
It’s great to know we aren’t alone, thank you everyone for telling it how it is xx

[Georgie Gee]

Hi Everyone,

I have a question which I think only people with herceptin to come might be able to answer..... 

I'm currently on FEC. 

I've been told that the herceptin will start with 1st T cycle. 

Ive been looking at herceptin closely (on good sites not Hello magazine articles..... 😬)

There seems to be a theme that from oncologists point of view, nobody gets side effects from Herceptin.

But from patients, there are plenty of side effects, and their oncologist says 'it is from the chemotherapy you're getting S E's'.  Or that it's the tamoxifen, etc.  But I'm not going to be having any hormone therapy. 

I want to ask my oncologist whether I can start my herceptin with the 2nd T cycle rather than the first one (have to have a whole year of herceptin 😩). 

On this and other monthly threads, the T part of FEC T can be full of side effects which may be different to FEC, and I want to be able to know what is causing anything that happens.  I also don't want T and Herceptin side effects at the same time, both being the first doses..... does that make sense? 

Thanks for any thoughts or knowledge of this.  

Georgie x

[PrettiestEyes]

Thanks for the welcome everyone...and I'm definitely making the most of having no side effects so far (insomnia at times now seems to be a side effect - hence sitting at the computer at 4.28am - but that's not a big worry in the grand scheme of things) x

[ktk]

Hi Jacqui. Ring the hospital helpline and tell them about it. Don’t wait for it to get worse!! Kx

[Jacqs]

Hello Ladies,

Can I ask if any one of you has a central line fitted & if so what their experiences of this are.

I had mine fitted 2 weeks ago and am already having couple issues with it.  

It’s feeling very achy tonight & I have an ache in my shoulder above where the end comes out.  It has bled ever so slightly.  I’ve checked my temp & it’s ok.  Just wondering if this is normal.

thanks in advance for any advise. Jacqui x

[SB1610]

Hello

Lalaland - Unfortunately your hair hurting is a likely sign it will start to fall out - this seems to be common indicator. I've lost quite a lot mine now but it has stopped hurting - still can't face the shave but I've been told it's not detrimental to regrowth so I'm leaving it for now.

I take lansoprazole for the acid reflux - I've been on this for a number of years - but my symptoms really ramped up in the few days after my first chemo. I had my dose increased from 15mg to 30mg and this sorted the problem. For my 2nd chemo I took 30mg on the day of treatment and for a few days after and then switched back to 15mg and gonna drop this to every 2 or 3 days until my next chemo. This has been working for me so far and I'm keen to take as few drugs as possible. Def ask your med team about getting something to help - don't suffer with it.

Cat - my se on round two were actually a little less severe than on round 1 so fingers crossed you follow the same pattern

Enjoy the sunshine everyone

Sue xx