August 2018 Chemo starters

[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

[Cat67]

Hi Lovely Ladies,

Sue – thank you for your best wishes for my second chemo session (yesterday). Already feeling nauseas despite change to anti sickness regime, last time the nausea started to kick in in a big way on Sunday (tomorrow) so hoping that doesn’t happen again, time will tell…whatever happens I know it’s only temporary!

PrettiestEyes – welcome to the gang! And no cock ups :-). We are all so different when it comes to SEs so make the most of feeling well! I am certainly appreciating the good days more! Agree with your comment about looking at the world through a different lense and appreciating the little things.

Multitasker – I was also advised to avoid probiotics. Aveeno sounds great, I’m also using bio-oil on my scars.

LalLaLand - I was prescribed Omeprazol for indigestion related SEs. The first sign of hair loss for me was a tingling sensation, next day head started to feel sore and strands of hair falling out every time I put my fingers through my hair (I had shoulder length hair) so took decision at that point to shave it of and that take away the soreness for me, so now I have a No.2 with a few bald patches  - my other half has a No.1 cut too so I joke that I never thought I would see the day that he had more hair than me!!:-).  Got lots of scarves but also getting on well with my wig when I go out.

For everyone feeling below par (physically and/or emotionally), which is probably all of us to some degree (!) stay strong, we can do this! Sending you all virtual hugs.

Look after yourselves…

Cat x

[LALALAND]

Due to have my 2nd chemo on tuesday. my hair hurt's does this make sense any tip's welcolm. also acid reflux at night sounding like a right whinger. Have a good weekend ladies enjoy the nice weather. love and hugs xx

[Multitasker]

Thanks for the heads up about pro-biotics, Lalaland. I will stop the kefir and ask my doctor when I see him in a couple of weeks. Definitely dont want to do the wrong thing. Some of the SEs have been so horrible I grasp any little twig I think might make me feel better and I should remember I do have not medical background.

Hi there Prettiesteyes. Some people dont get many SEs, my brother and SIL were fine through chemo, only getting tired towards the very end. It seems random how it affects different people. They were polar opposites in terms of fitness, health, diet etc. Another one of lifes mysteries! Fingers crossed your hair holds on fo the wedding

Wishing you all a great weekend. 

[Jude1962]

Hi Prettiesteyes

Well done on the no ses & I hope that continues for you
I’m very impressed that you have manage to continue to work most days - I’ve struggled this second cycle to even do odd bits from home

Hope it all continues well for you & hope the hair loss isn’t too traumatic

Jude x

[Jude1962]

Hi Cat

Hope today went ok & the ses are manageable - good luck

Jude x

[SallyG63]

Hi Prettiest eyes.

I'm from the June thread. I'd say it's not normal to have no side effects bug it happens. I've had nothing and I've done number 9 today. Like you I've worked everyday except Fridays which are chemo days. Make the most of it!

Sally.

[PrettiestEyes]

Hello all, I'm new to this forum (and in fact haven't used a forum in years so I'll probably cock things up - sorry),

I was diagnosed with invasive ductal cancer in June, had a lumpectomy just over six weeks ago (two small grade 2, stage 2), plus removal of lymph nodes (cancer in three out of 15) and I had the first of 6 chemo sessions ten days ago.

I'm sorry to read that so many are suffering side effects and my question is, is it normal not to have any negative side effects after the first chemo? I was fully expecting to feel sick, tired and a whole load of other things but I haven't (and of course I feel so grateful to have got one under my belt and to feel so well. I know things will get worse). I know my hair will go (currently I'm hoping it might last one more week, as I have a wedding to go to, and then I plan to chop it off and I have lots of hats and scarves at the ready).

I was able to go out for my first post-op run on Wednesday and I've been working as normal (I have a sedentary job) . If anything, I am feeling a bit hyper happy - looking around the world with fresh eyes and thinking how beautiful the sunshine is, how lucky I am to have such supportive friends and family etc. Again, is this normal???

Looking forward to getting to know some of you along the journey.

xxx

[LALALAND]

Hi just reading about kefir my oncologist told me to stop taking pro biotics as  chemo kill's off good bacteria and taking pro bioctics make's the chemo work twice as hard. don't know if this is so just do as i am told. 2nd chemo next tuesday only 4 left. Anyway have a good weekend ladies love and hugs xx

[Multitasker]

Morning ladies

One week on from 2nd EC. I think I feel better and more positive than same time last round. Like Sunflower really looking forward to a more normal week ahead and maybe knowing this is on the horizon helps keep me more positive.

I also find Aveeno really good for dry skin. I also use Palmer cocoa body oil a couple of times a week. It smells a bit  of chocolate, so cant face using it the days immediatley after chemo but love it other weeks. Its oil, obviously, so takes a while to sink in but as it has Vitamin E in it, I like to think it helps my boob scars too. 

My tummy has been very unpredictable. Crampy sometimes, tho could be period pain, loose sometimes, constipated others. I’ve started drinking Kefir whichseems to help me. There was a telly program a few weeks back talking about gut health. It seemed to make sense to me. I think the chemo kills alot of the healthy gut bacteria and I like to think this helps restore some balance ‘down there’. I was surprised how much I liked the taste and the feeling of it in my stomach. 

Lots of hugs to everyone and wishing all a positive day

[SB1610]

Good luck Cat

I actually found the se a little easier the 2nd round so don't give up hope 😁

Sue x

[Cat67]

Hi Lovely Ladies,

Thanks for the top tips for dry skin……….and welcome to LaLa and Val!

I’m having my 2nd of 3 cycles of FEC today so if last time is anything to go by I will brace myself for a crappy week……but safe in the knowledge that it is only temporary and I have better days to look forward to!

Look after yourselves…

Cat x

[ktk]

At LGFB they recommended Aveeno too. I have been using E45 shower emulsion as well as E45 lotion. Kx