Member
Posts: 224
Registered: ‎23-06-2018

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
Posts: 44
Registered: ‎02-08-2018

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
Posts: 224
Registered: ‎23-06-2018

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
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Posts: 1
Registered: ‎14-09-2018

Re: August 2018 Chemo starters

 
Member
Posts: 44
Registered: ‎02-08-2018

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
Posts: 116
Registered: ‎30-06-2018

Re: August 2018 Chemo starters

Warning! Emotional content
 

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
Posts: 224
Registered: ‎23-06-2018

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
Posts: 44
Registered: ‎02-08-2018

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
Posts: 224
Registered: ‎23-06-2018

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
Member
Posts: 116
Registered: ‎30-06-2018

Re: August 2018 Chemo starters

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 

Member
Posts: 116
Registered: ‎30-06-2018

Re: August 2018 Chemo starters

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

Member
Posts: 116
Registered: ‎30-06-2018

Re: August 2018 Chemo starters

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  

Member
Posts: 224
Registered: ‎23-06-2018

Re: August 2018 Chemo starters

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
Member
Posts: 224
Registered: ‎23-06-2018

Re: August 2018 Chemo starters

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

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Posts: 5
Registered: ‎20-10-2017

Re: August 2018 Chemo starters

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

Member
Posts: 15
Registered: ‎24-08-2018

Re: August 2018 Chemo starters

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

Member
Posts: 47
Registered: ‎18-05-2018

Re: August 2018 Chemo starters

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

 

 

Member
Posts: 19
Registered: ‎14-07-2018

Re: August 2018 Chemo starters

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!😀

Member
Posts: 116
Registered: ‎30-06-2018

Re: August 2018 Chemo starters

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

 

 

 

 

Member
Posts: 224
Registered: ‎23-06-2018

Re: August 2018 Chemo starters

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