August 2018 Chemo starters

[AMB67]

Hi SB

I feel for you and hope you are ok. The ladies on here all seem so brave and upbeat about things!

I am just a day ahead of you, had 1st FEC on 1st August.

I am just starting to feel have turned a corner today but would not feel confident driving or going far on my own as so  woozy headed when upright for any length of time.

I like many others am anxious about hair loss and woke suddenly and panicked this morning thinking it was all laid on my pillow!!  My head is starting to tingle and am noticing strands are falling easily. The texture has altered too and am afraid to wash vigorously or blow dry. I decided not to do cold cap and just had my hair cut really short last week. Am ready with some nice head wear and will see hairdresser at chemo unit when next there. I think once it starts coming out then it will be better to accept and will soon adapt. It just seems so frightening at this stage.

take care and keep in touch 

A xxxx

[Jude1962]

Hi Kip

Thanks for the feedback, it’s really good to hear from ladies a couple of months in front of us as it helps/prepares us for what’s coming
I’m having 3 x EC & then 3 x T so will look forward to how you cope with the T

Jude x

[Jude1962]

Hi S

I had exactly the same once the nausea started to abate I was quite emotional & crying randomly!
One instance I was watching River Cottage Australia & some piglets were being born & I sobbed for 10 minutes. The thought of losing my hair made me cry!

Yet a few days on I feel ok emotionally & whilst not looking forward to the hair loss it’s not making me cry!
I’ve got a wig appointment next week...

You will get through this little patch but a cry probably helps longer term

Jude x

[Kip]

SB - hello I'm from the June Chemo Starters, I have had 3 x FEC so far and now about to start 3 x T so know how you feel.  The hair thing is a big big deal for all of us,  no matter how prepared you think you are.  Mine started shedding at day 12 first cycle, little bits nothing much at first, but by day 15 it was falling out everywhere, so I did brave the shave.  Bloody hardest day ever I won't lie, but once it was gone I started to accept it, I have a lovely wig which looks good and it has taken a while but I am used to it now.  Not to say I can't wait to have hair again but you do adapt, lots of ladies on here have embraced the baldness and are quite happy to go out without a covering, I don't wear anything at home and even pop out to the bin without anything, but haven't really braved out without a hat.   Do whatever feels right for you, if you don't wish to shave, don't, you'll get there when you are ready.  By the way.. .by cycle 2 of FEC I have spikey bits of hair still all over, and some growing, and still have eyebrows and eyelashes (little bit thinner), underarms gone, down below very thin but leg hair STILL THERE unfortunately !!   Big Hugs... Kip xx

[SB1610]

Hello ladies

It's been a few days since I commented - I've been keeping my head down to ride it all out. My first treatment was 2nd August and I think I'm now coming out the other side of this first cycle. I've had some nausea and have been whacked by the fatigue so I've been having afternoon naps but that seems to be easing off now I've started on the injections to boost blood cells. Never imagined I'd be able to stick a needle in myself - it's amazing what you can do when you need to. Got an unpleasant taste in my mouth - like I constantly need to brush my teeth but I'm starting to feel a bit more like me.

Now the physical symptoms are easing the emotional ones are rising and I'm feeling panicy about leaving the house - god knows where that has come from - I mean I've been to South America and Africa alone but the thought of going 2miles to Tesco leaves me with a churning stomach.

Unfortunately my mind now keeps turning to hairloss. I'm practically prepared for this - wig, hats and scarves galore but not sure I'm emotionally ready. Am i alone in this? Anyone have any tips on how to cope - I'm not sure that braving the shave will be my approach.......

S xx

[Jude1962]

Hi Amb

Aargh thank you 😊

Think I’ve been lucky as I’ve missed the taste bud malarkey but otherwise twins 😂

Jude x

[AMB67]

Love your journal Jude 😭

It's fab!

Wow what a similar week we have had!!

A X

[Jude1962]

Hi Georgie

I feel for you if everything tastes the same - up to press I’ve not had that side effect, I’m a rught hungry Horace at the moment!
I’m being doing a blog & using it as a journal/diary & also as a bit of release.Hopefully it will help in the next cycles

https://dancingwithchemo.wordpress.com/2018/08/07/the-first-dance-%f0%9f%92%83/

Take care

Jude x

[AMB67]

It's been a very "cardboard" day today!

hope you all get some sleep,

night night

A xx

[Jude1962]

Hi Kip

I have been taking paracetamol & piggy backing it with ibrufen as the headaches have been that bad. I did remember to take my temperature first 😂- crikey there’s that much to think about constantly!

I had a decent walk this teatime which helped a little
as well

Cheers Jude x

[Georgie Gee]

Thank you lovely ladies - isn't it great to have one another 😄..... about the food taste thing, I thought to myself tonight, the only difference between all of the food on my plate this evening were textures.... so I'm thinking, eat lettuce and cucumber as they taste the same as chocolate!   And obviously some of each kind of essential food for nutrition, but this is one of the ways I plan to beat this. Feel sick whatever I eat so may as well be healthy. 

One tip I have discovered that really has worked well for me, is to have a notebook and every day, first thing when you wake up, write down your drug schedule.  E.g. 10am anti nausea, etc.  And for the injection at 4 pm for me to keep it regular, I set the alarm on my phone as well.  I tick off each drug as I take them, and it has helped with a sense of achievement and less muddliness generally.  I also write down what happened on the day when I go to bed, to kind of journal it.  Looking back I think this will be helpful next cycle.  

Going to to try to sleep again😴😴. See you all in the morning - when another day begins and it will be one day nearer to the end. 

Georgie xx

[Iamstillme]

Georgie Gee, I read beforehand that this is quite common.
I lost my taste buds between days 8-13 and found it very weird and unsettling. Everything tasted like nothingness, I think I was as prepared as well as I could be for all the other SEs but I certainly didn't really know what to do with the lack of taste. I lost my appetite, which wasn't great before chemo, so had to keep setting reminders to eat.
I was advised to steer clear of my favourite foods/drinks as it can put you off them -great advice imho - and I know now that it passes (well, last time it did and fingers crossed that it does this time). Now could be the time to start new foodstuffs - I found that I actually like kiwi fruit as my taste buds started coming back - dietary needs permitting of course.
I hope you find something that works for you x

[ktk]

Georgie, I have started putting yogurt and loads of lemon juice on everything!!! Kx

[ktk]

The first week is the worst. Take it easy. Take the meds and drink loads. If you are having Filgrastim injections watch the bone ache after a couple of days. I needed to take codeine but it was fine after that. Weeks two and three you will feel fine so make the most of the time and do something nice. Not too late though! I am usually in bed by nine although I still wake in the early hours. I have now started to nap more in the day to catch up on sleep!

Good luck ladies. You’ve got this and the weather is getting cooler!! Lots of love Kxxx

[Iamstillme]

I'm sorry to hear that you has a horrible time at the wig place in London but glad you had a much better experience in Ware.
I couldn't get to the one in Ware - impossible for me to get to and too expensive - so I went to Raoul's in Paddington and had a great experience, even came away with a couple of freebies, and found my perfect wig that was just the style I'd visualised before I went. I had a great time trying on a few different styles and it was done in a private room where I could take all the time I needed. I could've stayed all day if I hadn't had to leave for work!
Although my hair is very patchy and the mess is awful, I haven't gone for the shave. It just seems like an unnecessary expense, which I can't afford anyway, and I don't know anyone with clippers/shaver who can do it for me even if I did want to go down that route. I know it helps some people feel that they gain some control back and that's great. I, however, don't feel that I need that, I just feel bad for the cleaners (especially at work) as I moult everywhere I go! I clear up what I can see but I know I'm missing quite a bit.
Had a bit of a wobble this afternoon (1st one since initial diagnosis) and although I felt bad at the time, I now know it was much needed as it has clarified a few things I've been putting off.
Sorry for long post. I hope everyone is feeling good or on the way to feeling better.
Sam xx

[Georgie Gee]

Thanks for encouragement - I'm just sitting down to some salad.  Everything on my plate tastes like cardboard! Normal? 

[Street fighter]

Cat67 good luck for Friday

still feeling ok after chemo yesterday, so far so good x

[Street fighter]

Amb  and GG it does get better but make sure you tell your nurse as they will give you more or different Medes to help. Week 3 you will definitely start to feel better, make the most of it and try to get out and enjoy life

it is worth it in the end x

[Georgie Gee]

Yes I am on the same page Amb!  Almost exactly..... just off to the hospital for more sickness meds and I'm craving Calippo lollies!! 

Feel as if I'm about 93 and hardly mobile.... 

[AMB67]

Thank you Kip and Jude!

Makes me feel better knowing I am possibly turning a corner 🌻😂

[Kip]

Jude, I had a banging heachache each FEC cycle, take some paracetomal if you need it, but remember to take your temperature first though!  

[Jude1962]

Morning AMB67
It does get easier - I’m a few days ahead of you on day 9 today & from day 7 particularly do feel loads better.
The nausea has receded to background noise 😂, just mainly very tired although did have headache all day yesterday & woke up with it again this morning
Don’t think the warm weather helps any of us though!
You can do this
Jude x

[Kip]

Amb67 it does get easier, the first week is usually toughest I find, take all medication you can, take something for the bowels if you need it and rest as much as you need.  Try to drink j know you don't always felt like it, try ice lollies or suckjng sweets.  For the nasty mouth I have Biotene mouthwash (buy in boots or supersrug) it's specially forc chemo and they also do a toothpaste too.  I also use corsydl mouthwash which chemo unit said to try, it's quite strong so you can water it down.  Also cooled salt water is a great mouthwash and really helped with sore mouth too.  

Keep a diary of symptoms every day and you can tell chemo unit now it went at your next appt plus you will see a pattern and can prepare for next time.  It does get better so hang in there, you will have some good days again so plan something nice for them.  Take care Kip 

[AMB67]

Morning ladies 

hope you are all coping!

i am now day 6 following 1st FEC-t and got to say still feel pretty rough but managing. Trying to tell myself that anyhow!

nausea remains on and off, having loose stools, waking still at 3am, mouth becoming sore, appetite not so good and taste going, feel woozy and unsteady, trying to potter around house but becoming worn out very quickly.

hoping to pick up soon.......please!!!!

does it get easier ?

😭😭😭😭

[Jude1962]

Hi GG

How did you get on with the travel sickness bands? I’d tried them but they didn’t help 😂

Jude x

[Cat67]

Hi Ladies,

I haven't had my first chemo session yet but reading all your ''top tips'' is great preparation! Also helps to know we are all in this together.

Multitasker - thanks, pre chemo assessment, bloods and heart scan all booked in tomorrow so I should be good to go on Friday

Street Fighter - well done on getting through first session

Georgie Gee - totally get how you feel, i've had the same thoughts - so much to go through isn't it

Jude1962 - I feel like I've already got chemo brain and I haven't even had my first session yet! 🙂

Good luck for the next few days lovely ladies....every day we are one step closer.... 

Xxx

[Street fighter]

Thanks, had my first one today and so far so good, only time will tell xx

[Street fighter]

Multitasker,thanks. Had my first chemo today and at the moment feel fine !!! Had the cold cap so I was there for hours but will be worth it if I can keep my hair. I have mentocloperamide and dexamethasone for steroids and anti sickness, hope they work. You obviously need yo have U our melds tweeted so you don't suffer again. I was never sick on my FEC T. Do you have a 24 hour emergency number to ring, I think I would have ting it for advice in your situation. Good luck with round 2 xx

[Kip]

I put the sickness travel bands on the day of chemo and don't remove them for about 5 days, to scared too incase they are helping.. anything to get through and sickness not too bad

[ktk]

Don’t give up Georgie. You will get through it. My hospital says that I should ring if the nausea meds aren’t working and they will adjust. Please don’t suffer more than you have to.

Re steroids, I do feel better after about five days which coincides with the steroids wearing off. They make me grumpy and I snap at the family, which I hate. But we hug it out!!

Hugs to all Kxxx

[Kip]

Hello ladies, just popped it check your progress.  Sorry to hear some of you are suffering with sickness, if is horrible.  I found eating little and often helped, mostly salty things and try to drink lots, fizzy water or tonic water helped me.  It doss get better after a few  days though and you get used to it.  Take the meds.  I can fully understand the thought of why are we doing this when we felt so well, I still feel like that, j have 3 more T to go and it does seem like a long haul but we can and will get through it all.  Also if you can and feel up to it go out for a walk ,(remember your factor 50) even just a short walk makes you feel better and helps with the chemo fuzzy brain.  I also find that day 6 and 7 when I come off the steroids is a teary one, .lot of ladies feel the same, you just have to let it pass and you bounce back after, just be prepared.  Take care all Kip. Xx

[Georgie Gee]

Yes, we are all aboard the ship aren't we, with travel sickness pills too!!  Might try the band things tomorrow, if I get up and feel ok to drive to the shops.... it is comforting though to have one another isn't it.  I guess the next thing tonight is going to try to sleep... only 17 and a half weeks to go........ night night all, thanks for listening 

G G xx 

[Jude1962]

Hi Ladies hope you are all coping ok

Street fighter - good luck with starting your trial tomorrow, hope it goes ok
Georgie Gee - the nausea is so debilitating, I found days 1-4 were the worse. I agree the thought of doing it again another 5 (for me) times willingly is very frightening
Multitasker - sorry to hear you suffered with the dreaded nausea & pleased your portacath is healing ok. I’ve read a lot on the fasting but I don’t think it’s for me.
The tiredness is hard work as well, every time I do something for 10-15minutes, I then have to lie down for half an hour!!

Take care all

Jude x

[Multitasker]

Hi Ladies

Have to laugh at my post on friday. Literally an hour later massive nausea and cramps set it. I felt like my body was possessed. It was brutal. Took all the meds I could. I felt my body was just cramped all over with nausea a layer on the top. 

Thankfully about 2am I could feel it ease off a bit. Come a bit later I could take my first steroids and more anti nausea pills and it all seemed a little bit under control.

Yesterday I was pretty miserable. I was totally questioning what I was doing Georgie Gee too. Before this started I was the fittest and felt the best I had in years and now Im consenting to basically putting poison in my  veins.

Hopefully I’m not jinxing myself, but feel an improvement again today - its all realtive bc anything is better than friday night 

Other good news is changed the portacath dressings for first time (told to leave for a couple of days) and the wounds are SO much better than Friday (only now I realise how worried Id been about how they were healing, how theyd look etc) so huge weight off mind.

Guess we each have to learn how our bodies rythms work with the chemo drugs. Pretty scared to do it again but hope to talk to nursing team and try some changes to meds and timings. Quite a few posts on the forum about fasting and nausea, though Im not sure Im cut out for that.

Streetfighter, hope tomorrow goes OK for you, sounds like you have already had a long journey.

[Georgie Gee]

Has anyone thought of giving up the chemo?...... I have to be honest I'm wondering, if the surgeon says "all the cancer has gone", and then gives us this trauma (and I've only just started....) then why?.... 

[Georgie Gee]

Hi Ladies, 

I'm coming up for air after my 1st FEC T on Thursday. 

Feel like I have been injected with a time bomb which could go off at any time with side effects, multiple times.  Have had the go back for 2nd type of stronger nausea meds as cyclizine didn't work on Friday.  Have had last of the stronger ones just now, and steroids have now finished.  So I'm wondering what part of the time bomb will go off first..... it's scary isn't it?

[Street fighter]

I start tomorrow on a trial of Cabazitaxel. Had primary 6 years ago but now have secondaries in lung, bones and lung. Had FEC T for 18 weeks last time followed by 6 years of anastrozole but became resistant to it, big shock with diagnosis. But we keep smiling and taking the medication. Good luck to all other August starters X

[Kip]

Hi very good tip to take steroids morning and lunch time as it helps with sleeping.  My nurse writes on the various boxes when to take them as I always get muddled.

[Jude1962]

Hi Multitasker
No worries I couldn’t work out how to use the house phone earlier - chemo brain!
Yes I’m going to see if they can give me different anti sickness meds next cycle
Have improved today though, actually eaten a meal tonight!
Jude x

[Multitasker]

Whoops Jude and AMB67, I got you swapped up, first effct of chemo brain 😂

[Multitasker]

Hi Ladies

Had my first dose of EC this morning. I was real worried about the Portacath but nurses said it was fine to use.  Georgie Gee just be prepared for some bruising. The procedure doesnt hurt but a bit disconcerting 😬. the oncologist came round but said once equipment is in, its good to go. He warned that chemo slows down healing so be super careful keeping it clean etc.

Used the cold cap, no lie, its uncomforatble at first - think ice cream headache but after 20 mins I was Ok. Its bulky and gets in the way a bit. Helped that today was so super hot. Just have to wait and see if it helps at all.

Main SE at the mo is extremely light headed. Almost felt like I was coming round from anaesthetic earlier, which Nurse said could also be to do with the cold cap. Still feeling woozy at home now.

Jude, I was told not to take steroids in the evening bc they would stop me sleeping. Maybe something to ask next time?

Sorry to hear you’re feeling sick AMB67 - hopefully they can swop the drugs a bit. It seems everyone is using something different.

Picking my wig up on wednesday, Sunflower. Hope I’m feeling ok.

Good to hear you are doing ok Katluan, and hope your tests come back OK Cat67

[AMB67]

Hi ktk

thanks for reply.

yes was thinking the same re take home meds. Think they try you on cheaper ones first which is understandable. Will ring them Monday if no better.

Did you feel better or worse when the 3 days of steroids stopped?

Hope you are getting on ok

2 weeks out of 3 feeling Okish would be great!!

All the best for last 3 sessions

Amanda

[ktk]

Hi AMB. It sounds as if your take home meds need adjusting. Ask for Emend. I think they are reluctant to prescribe it because it is expensive but it is very good. I also have Ondanestron with the Metaclpramide as an as and when back up bi am also triple negative like you. I’ve had 3 of the 6 cycles. Headache and sleeplessness for all three. You will feel better in a few days and be fine for the following two weeks. Good luck with your treatment kx

[Mai7]

Morning Ladies, just popping onto your thread to wish you all the best. I finished 8 rounds of FEC-T in October 2017 and life is all back to normal. Here is my blog which has lots of chemo tips which we gathered between us along the way: http://lifeafterlola.blogspot.com
You can get through this, it's all doable. I hope I've shone a light at the end of the tunnel for you in sone way. Xxx

[AMB67]

Morning ladies

This is my first post but have found the forum really useful in the build up to having treatment. So thank you!

I had lumpectomy and node biopsy a month ago, found to be invasive ductal grade 3 negative to all hormones but no spread to lymph nodes.

I had my first FEC of x6 FEC-T on 1st August and so far have survived!! Then it's radiotherapy (80mile round trip everyday for 4 weeks)

The treatment itself went fine, was in the department for 3 hours, was offered lunch whilst there. The other patients seemed quite happy too. I took my 21year old daughter for company which was a good idea. I had decided beforehand not to try the cold cap as my hair is very short and I have just prepared myself for losing it now.

I have bought some nice head wear in readiness and have an appointment to see the hairdresser at the chemo unit next time I go to look at wigs, get some advice etc.

The afternoon I got home The nausea kicked in and I took the metachlorpromide regularly that day. Was awake by 2am pounding headache and nausea so not much sleep had.

Yesterday started the steroids 2mg x3 times a day and have got to say helped the nausea. Started feeling flushed in the face late afternoon and it is still the same this morning. Don't feel unwell though. 

Was awake again at 3am last night but did eventually get back to sleep.

Appetite not been too good for a few days(no bad thing as need it to come off, not gain) just drinking lots of fluids to flush toxins through. Pee is less pink today!!  Need to eat when take steroid so things like rice cake, banana, yogurt was managed yesterday.

I am lucky to have lots of friends and family support around me and for that I am grateful.

good luck to all you ladies out there going through it as well.

Be brave, strong and take what the hell they throw at us next!!!

🌻🌻🌻🌻🌻🌻

[WhyteFawn]

Morning ladies. How are you all today?
I'm from the Oct 2017 thread and finished 6x FEC-T in Jan 2018.
If you have any questions feel free to ask or pop over to the Oct thread and leave a message on there.
X

[Cat67]

Hi Ladies,

My first post..

I had a lumpectomy in July and my treatment plan consists of FEC and T and Herceptin, among other things. I have my chemo assessment on Monday with a view to first chemo session on 10th August (as long as all tests can be completed in time). 

Really helpful to read all your updates....sets the scene for what's ahead! 

Loving the cocktail shaker idea...if only! 🙂

X

[Jude1962]

Or even mouth 👄 ulcers!! x

[Jude1962]

Hi Ladies

Pleased to see you all mainly seem to be coping with the chemo
I’ll be honest I’ve had a shocking week - mega nauseous, vomiting, heartburn, so tired although it is hot & now got s couple of moth ulcers. Fuzzy head starting to clear today though.Also been a bit weepy the last 2 days which is not like me at all.
For the 2nd cycle I’m gong to see if they can change my anti sickness meds, as the drugs don’t work 🎶
Had to cancel my wig appointment as was too ill to travel. Well done to you ladies who have founds wigs that you are happy with. I’ve ordered & received today a couple of scarves from www.hipheadwear.co.uk - quite nice to be fair

Take care
Jude x

[Katluan]

Hello ladies.

Yesterday I had my picc fitted, no problems there as apparently I have large veins and then my first EC a couple of hours later and so far so good, slight nausea but barely noticeable it certainly hasn't curbed my appetite, the meds seem to be doing their thing. I am trying not to feel smug though as I'm aware it's only been a day lol. I suspect I could be in for a rubbish weekend but I'll carry on taking it a day at a time and see what happens.

The chemo centre experience was grand, lovely staff and patients, I was only there a few short hours and I think the volunteers came round with a trolley of drinks and snacks at least three times! My nurse said I was very calm and well prepared for a first timer (I didn't know what to expect so hadn't brought anything with me, just my lovely daughter) but from what I could see everyone there appeared to be relaxed; a few slept and there was lots of chatting and laughter among others, altogether it was not an unpleasant experience. Still peeing a bit pink tho!

Lots of hugs and luck to all of you. Keep posting, it's great to hear how you're all doing.

Fran x