Member
Posts: 56
Registered: ‎01-09-2018

Re: September 2018 Chemo Starters.

Thanks MamaTony ... it’s good to know that they should be the same ... can prepare a bit ... or try at least 😂

Ahh GabyF sorry to hear you’ve had another rubbish night.
I’m not looking forward to the hot flushes at all ... can you take something to ease them?

We definitely need some lighter moments to keep us going ... this nightmare seems never ending at times and just when I think I’m coping ok I start blubbing again. We are getting there tho ... Christmas seemed a long way off when I first started treatment 💪🏻❤️

Here’s to Spring, Sunshine and kicking the crap out of cancer 💩 ☀️ Lisa xx
Member
Posts: 35
Registered: ‎27-07-2018

Re: September 2018 Chemo Starters.

Hi,

Lisa: I do find the side effects for me have been the same. Bad furry mouth for the first 7 days, have got anti biotics to sort that out. Loose my taste buds for the first couple of weeks and also suffer from dry mouth, have bought biotene mouth spray which helps that. Few aches and pains but manageable and tiredness....better than FEC tho!

Gaby: I have not googled as too scary. I think the main difference is that there are no tablets longer term so get 6 monthly scans I believe. My thinking is to live my life and try and be as healthy as I can whilst still enjoying life!

❤️❤️
Member
Posts: 90
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Hi Everyone,

 

Another rubbish night with hot flushes and nightmares. However, I dragged myself in to town, got some nice presents for my husband, then got back home, had some soup and crashed in to bed for an hour and a half. Absolutely shattered! Just got up and had another bite to eat and am feeling so much better. I did try to reduce my daytime sleeps last week, as I thought they may be affecting my ability to sleep at night, but that theory seems to be out of the window, so, like you Galligirl, I've decided that I might as well get some sleep when I can!

 

MamaTony: I'm also triple negative. So far I have very deliberately not read up anything anywhere on this, as I am terrified what I might find. However, I am very slowly (maybe, possibly Smiley Wink) coming to the conclusion that I can't shut out all knowledge forever and perhaps, just maybe, finding out a bit more might be a good thing. Did you google this at all? I've been told by various people here on the forum that that is a very BAD idea. Or did you just get some books from the library? I'm really not sure how to go about finding out more without scaring myself too much! Smiley FrustratedI might ask at Maggies when I go there on Thursday and will let you know if they have any good tips.

 

LisaT: So glad you had a nice weekend and birthday. It's so important to find those happier, lighter moments.Smiley Happy

 

And finally, Galligirl, I think we all want Spring to arrive, with lots of hope, sunshine and flowers. It's not about wishing time away, just looking forward to a brighter future (I'd better stop here, otherwise I'll start blubbing! Seriously, I thought I'd done with tears, but they are often not that far from the surface!). So here's to Spring and Sunshine!!! HeartHeartHeart

 

Gx

 

 

 

Member
Posts: 56
Registered: ‎01-09-2018

Re: September 2018 Chemo Starters.

Morning,

Hope you are feeling brighter today GabyF / ALittlePixie ❤️ Hope you will get a solution from your oncologist today ALittlePixie - sounds like you’ve had a rubbish weekend 😘 Not heard about steroid tail but I had 3 days of steroids plus an extra day of steroids on half dosage ... not sure if similar thing.

Thanks for the tip about the fizzy vitamin C tablets Jacqs / MamaTony - will definitely give that a try. Did you find that you follow the same pattern of SE with Ts MamaTony?

Had a lovely weekend away thanks Galligirl ... really lucky with the weather ... it was just what I needed as had a bit of a wobble on my birthday. Good luck with your first T on Thursday 💪🏻❤️

Hope everyone has a good week 😘 Lisa xx

Member
Posts: 37
Registered: ‎31-07-2018

Re: September 2018 Chemo Starters.

Good Morning!

Nikki49 - thanks for taking the time to pop in....so good to reinforce that there is light at the end of the tunnel ☀️

Alittlepixie - I hope you are a little more on top of your pain and that your visit to the oncologist nurse finds some resolution for you....!

 

GabyF - I am also having problems sleeping- too hot, twitchy legs, head spinning, can’t remember the last time I actually slept well! I am lucky I can sleep during the day...probably the wrong thing to do but I have to as I am soooo tired 💤. 

 

Does anyone know what the hot flush thing is all about? I get the whole reduction in er but why do you get hot? Must google it! 

 

MamaTony - I have my first T on Thursday....feeling anxious so following your tips avidly! Bit C tablets at the ready! 

 

LisaT - hope you had a lovely weekend away celebrating your birthday 🎂 

 

and to everyone....hang in there...it is a long slog...I don’t want to wish time away but I dream of spring sunshine and daffodils. GGx

Member
Posts: 35
Registered: ‎27-07-2018

Re: September 2018 Chemo Starters.

Hi,

Nikki: so great you have got through this journey🎉🎉
I am also triple negative and it scares me so much. Have you made many changes to your lifestyle post treatment?
Reading books on diet etc. but all a bit brutal... no chocolate, carbs, wine🙁🙁... all the good stuff!!!

Tip for those going through T chemo, I find if you get some vitamin C tablets and put 1/2 of one on you tongue it freshens your mouth a bit and gives you some saliva.
I am suffering from dry mouth and sore finger nails after 2 T’s.

Hope everyone has a good week❤️❤️
Member
Posts: 62
Registered: ‎12-06-2018

Re: September 2018 Chemo Starters.

Those hot sweats are hideous.  They started just at night, but am now having them daytime too.  Thought the whole menopause thing was over for me as I had a hysterectomy 9 years ago, but thanks to chemo, it’s all back with a vengeance.  It just keeps on giving doesn’t it 😡😡

Member
Posts: 90
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Evening everyone,

 

It really is fantastic to hear from someone who has been through all this rubbish and come out the other side. Thank you, Nikki.

 

Little Pixie, I hope you were able to sort something out to deal with your pain and are feeling a bit better.

 

Went for a nice walk in our local park with husband today - good to get some fresh air, although I'm feeling breathless again.Smiley FrustratedAlso managed to do some Christmas shopping locally, which was very unusual for us - we're usually in a slight panic by mid-December! I'm planning to go in to town tomorrow get a few more pressies, something useful to do with my time anyway.

 

LisaT & Jacqs: I am trying not to snack too much, as I realised I was putting on a lot of weight. I have tried to get temporary relief from the bad taste by drinking lots of different herbal teas, which kind of helps, though by dinner tonight I was so desperate for food that my husband had to remind me to slow down! Smiley LOLSo maybe that doesn't quite work either?!

 

Rubbish night last night: I felt really hot one minute, then threw the duet off, only to get absolutely freezing within seconds, so kept waking up and eventually gave up around 5am - awake until c.7am, then fell back asleep, only to be woken at 8am by our neighbour's son playing some wild game that involved screaming the house down (he's only 3!). Hopefully I'll sleep a bit better tonight, as long as my body doesn't do that hot-cold thing again!

 

Love to you all,

Gx

 

Member
Posts: 52
Registered: ‎16-08-2018

Re: September 2018 Chemo Starters.

Morning everyone
Thanks for the advice Nikki...it's great to hear you're through and there's a light at the end of this hellhole. I've not heard about doing the Steroid tail, so I'll ask.
Thanks to everyone RE advising about my pain on this T. I'm seeing my oncologist nurse tmoz so I'll tell her about the pain. It's now gone to my hips and lower back.....I swear it's like child birth splitting pelvis pain. I have issues with my bowels, so the only painkiller I can tolerate is paracetamol. Everything else reacts badly with my bowel and causes more pain issues. I'll see what they say tomorrow. I'm using heat pads at the mo and meditation to get through.
On a good note, there's blue skies and it's Sunday, so I'm gonna spend time with my little family 😍
Love to everyone xxx
Member
Posts: 342
Registered: ‎22-08-2013

Re: September 2018 Chemo Starters.

[ Edited ]

Good morning ladies,

 

I'm from the September 2013 thread, I'm not on here much these days but I do like to pop in particularly on the September group to see how you are all doing.

 

When you get that rotten mouth - Some of the girls in my group drank tonic water prior to eating they swore it made food taste near to normal, unfortunately for me I don't like it.

 

I had awful pain on the  'T' part of FEC-T, I complained to my Onc to try to score some stronger painkillers for next time - I didn't want a reduction in chemo strength because hey that's why we're doing this...... to blast this disease to kingdom come.  Anyway he prescribed what he called the steroid tail, yes it is more steroids but you take them in ever decreasing doses daily rather than just the sudden stop.  It was like a miracle cure.

 

PS Top tip! I was told to take my steroids at 8am & noon, they never interfered with my sleep 😊

 

As for me now, I had skin sparing mx, then reconstruction surgery once chemo finished, then had a reduction on good boob to match, had a nipple made and then tattoo'd - haha I now got the boobs of a 20 yr old, every cloud and all that 😃

 

As I was triple negative I'm not on any meds which was a bit scary as I felt left adrift without a life belt, my Onc signed me off this year and my consultant will now only see me annually as opposed to 6 monthly for another 5 yrs (he did say he could discharge me but I like his reassurance).

 

So life does go on, you just appreciate it a bit more.

 

Best of luck ladies x

 

PS my hair grew back curly, was dead straight before lol, it's not so curly now more of a kink.  I used to have quite thick hair but alas it's quite thin now ☹️, on a plus note, leg & armpit hair is really sparse 😆

 

 

Member
Posts: 62
Registered: ‎12-06-2018

Re: September 2018 Chemo Starters.

Hello Lovely Ladies.

Seems like everyone is suffering this week.

 

Gaby - I sympathise over the horrid taste.  I had my double dose of Paclitaxel & Carbo on Thursday and since have had cystitis, sore tummy & rib pain, daily nosebleeds & that awful taste, so have been feeling sorry for myself for last few days.  Don’t stress about the EC just yet - take it one step at a time & it seems more do-able.  Not sure if EC is like FEC but with just 2 of the drugs instead of 3 ?

 

A Little Pixie - so sorry to hear you’re suffering so much my lovely.  I agree with everyone that you need to ask for some stronger painkillers to make it more bearable.  I’ve been getting quite a lot of pain in my ribs but the oncologist just said to see how it goes as it’s not such common SE with drugs i’m on.  If it does keep on, she said she’d organise a scan to see what’s going on as it’s possibly to do with lingering healing from breast surgery. 

 

Lisa T - i’m with you.  The taste doesn’t seem quite so bad when you’re actually eating, so i’m guilty of picking constantly at the moment,  have put on 1/2 stone in last couple weeks🐷🐷

 

Has anyone tried the fizzy vitamin c tablet dissolved on the tongue? Just 1/2 tablet each night.  One of the ladies on an earlier thread suggested it for oral thrush but it does help a little in clearing that awful taste & as it’s only vitamin c, doesn’t cause any problems.

 

Looking forward to spending the day with OH tomorrow.  Haven’t seen much of him the last week or so as he was working away last weekend & has been busy all of this week.  

Enjoy what’s left of the weekend xx

 

 

 

 

 

Member
Posts: 90
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Little Pixie: I hope you managed to get a bit of fresh air and that your SEs are starting to ease. There must be something you can take to lessen the pain a bit?! I agree with LisaT, contact your Chemo nurse and badger them for help - I don't see why you should have to put up with so much discomfort and pain! I had a sleep after lunch and am feeling a little less spaced-out. This morning I had a really bad bout of chemo brain, not being able to remember words, what I had said/did etc. My kids just laughed and groaned Smiley Tongue

 

LisaT: Thanks for your encouragement. I'll be on EC, with out the F (whatever that stands for!), but hopefully it will be okish. I just want all of this to be over Smiley Frustrated

 

Ktk: Gosh you're brave. I don't think I'd have the confidence to do all that at school functions, well done you! Mind you, I think I definitively saw a couple of mums at the parents' evening who seemed to have rather thin hair and were wearing scarves. Sadly there was no time to introduce myself (they were new to the school I think) and anyway, what would I have said "Excuse me, I notice you've lost your hair. etc etc" Not a great conversation starter! Smiley LOL

 

Am planning to visit the Maggies Centre at St Barts on Thursday, if I feel up to it. They've got a drop-in walking session, hair care (for what's left!) and general advice day then, so I'll give it a go. I feel I could do with a little more socialising and my local Macmillan Centre doesn't really offer that.

 

Hope everyone has a reasonable Sunday. Might go out for a walk with my husband, if the weather improves (very grey and dank here in London).

 

Gx

ktk
Member
Posts: 558
Registered: ‎02-04-2018

Re: September 2018 Chemo Starters.

Hi Gaby, I was head of Y11 last summer, and couldn’t go to school once chemo started because of the risk of infection! I wore a big hat for the arrival at the prom, but took it off for the meal. As I decided not to have a wig, I think they noticed!!🤣🤣🤣xx. The next time I went in was on results day, again bare headed. This was the first time most of the parents had seen me. It was fine! I’ve been off school since May, but I guess I’ll have to go back sometime in the new year!! Kx
Member
Posts: 56
Registered: ‎01-09-2018

Re: September 2018 Chemo Starters.

Afternoon ladies,

Horrid taste is awful isn’t it ... read on another post that having ice lollies before and and during treatment is supposed to help ... not tried it tho. I keep eating to get rid of the taste 🐷🙈 probably not the best solution ha ha!

Sorry to hear you are both feeling rubbish today 😘💪🏻 ALittlePixie are you taking anything for the pain ... ask your nurse for stronger pain relief if you need it (my nurse mentioned codeine) I had rib and back pain too but it wasn’t too severe and paracetamol took the edge off it.

GabyF - I was ok on FEC too and had a good couple of weeks. The unknown SE are always scary but try not to stress ... hopefully you’ll breeze through it 😎

Sending big hugs ... we’ve got this 🥊💪🏻❤️ Lisa xx
Member
Posts: 52
Registered: ‎16-08-2018

Re: September 2018 Chemo Starters.

Afternoon Gaby
Sorry to hear you feel so crappy after Wednesday's dose. The horrid taste in your mouth is the pits isn't it.
I started with the T side effects on Weds afternoon and they're kicking my ass at the mo, so I'm stuck in bed, in pain and feeling sorry for myself! I'm hoping the next lot of T won't be as bad. My chemo nurse said this one would be bad cos I've still got FEC in my system.
Try not to stress too much about EC. You're right that it affects different people in different ways. Most people seem to get a good couple of weeks with it tho, so I really hope you do too.
It's quite a bright day here today so I might try and shuffle outside for 5 mins of fresh air. I feel like I'm 100 and I've been run over multiple times, it's ridiculous!
Anyone on T.....did you get really severe rib and back pain?!
Hope everyone is as well as can be. Lots of love xxx
Member
Posts: 90
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Morning everyone,

 

we all seem to have gone a bit quiet! I am feeling a bit rubbish today, as I had my doubledose of carboplatin and paclitaxel on Wednesday. Didn't sleep well, horrid taste in my mouth and generally just very off-colour, so nothing unusual there Smiley Wink. I've got two more session of Paclitaxel and then I switch to EC, which I am rather apprehensive about. Some people don't seem to have SEs that are too awful and others really have a rough time. However, it's not as if I have any choice in this, so I'll just have to see what happensSmiley Frustrated.

 

Not much to report here otherwise. Just hope everyone is ok?

 

Gx

Member
Posts: 90
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Hi ktk,

 

I think you're incredibly brave letting your kids loose on your hair! Sounds like you actually had loads of fun together though, which is so important at the moment and must have outweighed any worries you had. Nailscissors??? Actually, sounds like the sort of thing I would do - being smaller and perhaps therefore safer?! Smiley LOLAs for time, well that doesn't matter - it's not as though I have loads to do at the moment.Smiley Wink

 

But a Year 11 Prom, well you really are brave!! I haven't told any of the parents at my kids schools about the BC, partly because I don't know them that well and partly because my son is keen to keep school a cancer-free zone, which I can understand. I was slightly apprehensive just going to a parent evening the other day. No one said anything, as everyone was too busy trying to get to their 5 mins slots. Christmas Fair is coming up soon though, so I will need to think what to do, if anyone comments on my appearance. Maybe they won't? Did anyone notice at the Prom?

 

Gxx

ktk
Member
Posts: 558
Registered: ‎02-04-2018

Re: September 2018 Chemo Starters.

It is possible to do your hair yourself, but it takes ages!! I attached my shoulder length hair with (nail!!!) scissors, then started with OH’ s shaver. I hadn’t realised that it wasn’t very good/sharp. My husband, son and daughter all had a go. We had loads of laughs and no tears!! We managed it in the end and I was happy with the result! I actually went to the year 11 Prom the next day! Good luck, but perhaps seek professional help first!!! Kxx
Member
Posts: 90
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Thanks so much, Jacqs and Little Pixie. I'll mull things over for a few days and try to find someone with a clipper (hubby doesn't have one!). I've already got a Pixie cut - got that a few weeks ago, but my hair has rather surprisingly grown a bit since then while at the same time falling out, so I do look rather odd now with a few longer bits and quite a lot of thin patches, lovely! Smiley Wink

 

Little Pixie: what an exciting career you have ahead of you, plus a a lovely creative hobby (actually sounds like your rather good / advanced at the jewellery making, if you're selling it, brilliant!). But yes, I can imagine upholstery is physically tough. Still, you've got something wonderful to return to next summer!

 

Jacqs: How nice you can drop that last chemo session! I'll be interested to hear how you get on with the genetic counselling sessions. I'm due to get my results on the genetic test early next week and may be going down the same route. I had my double dose today - I usually feel fine on the day and even the next day; the carboplatin hits me on Fridays and particular Saturdays. i.e. just in time for the weekend.Smiley Sad I hope everything goes smoothly for you tomorrow.

 

Gx

Member
Posts: 52
Registered: ‎16-08-2018

Re: September 2018 Chemo Starters.

Morning!
Braving the shave - I went thru a very similar process to Jacqs. The hairdresser cut it in a very shirt pixie cut, then when lots more came out, my husband used his clippers and kept going gradually down in size. The next few days, I soaped my hair in the shower and the lasagna bits came out.
I actually like my bald head, although I do have some fluff slowly emerging now. My daughter, she's 10, was really worried about me being bald but she quickly got used to it and likes it too.
Great news about bloods and chemo again Gaby.
Fab news about chemo stopping at Christmas Jacqs. I'm so pleased you had a lovely time at the Christmas market.
Thanks Lisa, so far so good with the T. I do have a horrid taste in my mouth and my chest is tight, but no nausea which I'm happy about.
Love to everyone. It's peeing down here....it's called The Lakes for a reason I guess 😂😂😂