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January 2019 chemo starters

Member

Re: January 2019 chemo starters

That's so kind, thank you xx
I had my mastectomy in November, and have had my chemo workshop today, ahead of 6 months of chemo on Thursday and then 15 x radiotherapy sessions too, so similar.
To think my husband and I were planning to try for another baby 15 months ago, but this was the path I was destined to follow instead.
Surgery, pain, loss of a breast....none of it bothered me but Thursday terrifies me beyond words. I want to run away but there isn't a place on earth that's far enough.
Member

Re: January 2019 chemo starters

B74 - you're not being depressing at all.  This is just a safe place to vent where we know that other people on here "get" us x

 

MMJJ - if the T is for Taxol, that's what I'm on.  I know I only had it yesterday but so far I'm surprised at the lack of side effects.  I've taken my stomach lining tablet, and my anti-sickness ones, and haven't felt bad at all (I know it could still hit me like a ton of bricks)

 

Debs

x

B74
Member

Re: January 2019 chemo starters

PS And sorry to be depressing! Everyone experiences it differently so this will not be everyone's experience by any means.

 

Also MMJJ - is the 'T' for Taxol? If so I've been told it's much easier than EC / AC

B74
Member

Re: January 2019 chemo starters

MaMa JuJu - that sounds truly awful, so sorry for you. I found it bad enough with 'just' nausea and no violent vomiting. I really hope they can find you better meds for next time.

 

The thing that's really taken me by surprise are the psychological effects. I expected to feel sick, tired etc (though the 'hangover' and 'flu' analogies they used didn't come close to the reality!). I didn't realise I'd feel like my whole essence had been stripped away so nothing was left except a husk. For the first few days I couldn't care about anything. Friends were trying to remind me that I'm doing it so I can live to see my kids grow up, and I felt too depressed to care. I'm only just beginning to feel more like myself again (mostly).

 

Yes next stop is hair loss! I know I have about another week, but like the rest of me, it no longer feels like itself. Very limp and lifeless. At the beginning of this journey I thought hair loss was the least of my worries, but as with everything the reality is often a bit more confronting!

Member

Re: January 2019 chemo starters

Thanks for the feedback everyone. I've still got a few days to wait and feel a bit upset about the lack of information from my chemo centre. I have an appointment the day before- is that when they'll show me round etc ya think?
LB
Member

Re: January 2019 chemo starters

Thankyou Kip your posts always make me feel more positive 🤗
LB
Member

Re: January 2019 chemo starters

Hi everyone I started my FEC-T today. All went well and the nurses were lovely 😊 I have just felt a little bit “spaced” out 😊 I managed to prepare the evening meal and enjoyed it - I just hope I keep it 😀 what a strange journey we’re on but from reading the comments from previous people I have great confidence that we can do it 😊 good luck everyone x
Member

Re: January 2019 chemo starters

Hallo everyone!

I am now feeling slightly more human!

Well done for everyone who has been through their first chemo!

I haven’t had the best start to my chemo journey. Unfortunately I was violently sick from 3 to just after midnight on the first day and ended up back in the hospital to get checks done but all ok so it’s just a case of getting on with it until the side effects subside.

Steroids played havoc with my anxiety which I have anyway so I felt like I was tuned to the moon and could not sleep!

Felt very emotional, I am not really a crier but I have certainly cried over the last couple of days. I am guessing it’s a mixture of diagnosis, hormones, fear etc.

No appetite since chemo but I enjoyed some scrambled egg this morning.

Taste in mouth is yucky but heard mints are good for that.

Next stop, hair loss.

Sorry I have not sugar coated this up but it is just the way I reacted to it. Everyone has completely different reactions which I understand after speaking to friends had reading on here.

The nurses were amazing when I got the chemo and I had no issues with getting it at all. I guess I know what to expect the next time.

I am getting 3 x EC and then T.

Anyone got any experience of the T part? Is it just as gruelling?

I hope your are all doing well, sending my love and let’s get this done! Not long in the grand scheme of things!

Xxxx

Member

Re: January 2019 chemo starters

Hello HelenBumbleBee.  It is all a bit overwhelming to start off with, isn't it?  But, don't worry, you've found this lovely site now (I'm so glad I did).

 

As Kip says, we're all just starting off so in the same place as you.  We'll just support each other every step of the way.

 

Debs x

Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hello HelenBumbleBee, so sorry you find yourself in this nightmare but you have definately found the place to be.. everyone on here gets exactly how this feels.   Talk and read away, these lovely ladies are doing great with their first chemo sessions.. you'll be the same.  Its so tough at the beginning but when you get into a pattern you'll be fine.   I finished my chemo at end of September 18 after having masectomy, I then had ANC clearance and 15 x radiotherapy finishing on 19th December.   All went ok, never as bad as I thought, yes some grim days with the chemo and surgeries etc but always picked up and moved on and always always always came on here, asked questions, moaned, whinged and chatted to the ones who really get it.

Take care... let these lovely girls guide you along..

Kip

xx

Member

Re: January 2019 chemo starters

I am new to the site as of 2 minutes ago, and due to start treatment on Thursday. Feeling isolated and overwhelmed, and struggling with family reactions when I've not even started. Just wondered if I could join this thread in the hope I find company from people who get it.
B74
Member

Re: January 2019 chemo starters

I've also been feeling pretty nauseous & generally rotten, but also busy replying to messages from friends and family, and also just taking a break from the internet because I'm sick of thinking non-stop about cancer and chemo. DebsE - I'm having Taxol after AC and my Dr told me Taxol is much easier so hopefully you won't have too bad a time of it. All the best everyone. xx

G
Member

Re: January 2019 chemo starters

Well done D 💗x
Member

Re: January 2019 chemo starters

Hi Welshj and all.  I tried to post, telling you how it went today but kept getting error messages (several posts might all appear at the same time).

 

It was better than I expected.  The nurses were great, talking me through the drugs and what they were for, as they were being adminstered.

 

I need a bigger cold cap as they had to force it on my head (which won't help the roots) but after the first 15 minutes I was numb so it was fine.  Heavy though.

 

I'm home now, have had a good tea and am ready for bed.

 

D

Member

Re: January 2019 chemo starters

Hi Welshj and all.  I'm home now and it all went really well.

 

There was a bit of waiting around, mainly because they're still playing catch up after Christmas.  The administering of the drugs was very straightforward, with the nurse naming each one as she gave it and telling me what it was for.  There were 4-5 of us in the room.  The chairs were recliners and there were heated pads to put over us to keep us warm (that sounds a bit like we were all huddled up together - we weren't!)

 

The cold capping was a bit troublesome, mostly because they didn't have a cap in my size so I had to have slightly too small one.  I had a pain in one temple to start off with so the nurse put a piece of gauze between the cap and my skin and the pain went straight away.  After about 15-20 mins it was all numb so I couldn't feel anything.  It's a bit heavy though.  At one point I nipped out to the loo and could see in the mirror I didn't look as daft as I felt!

 

So home now and I'm feeling fine though tired.  I'll see how it is when the drugs wear off, but they've sent me home with half a pharmacy to use if I need to 

 

D

LB
Member

Re: January 2019 chemo starters

Hi I had my information appointment today and the nurse was so helpful and I feel a little less anxious now.  She went through some of the side effects and showed us around the chemo area so that we know what to expect when I go for my first FEC-T tomorrow.  I just hope it all goes well for all of us new starters. Good luck everyone. 

Member

Re: January 2019 chemo starters

I'm also starting taxol tomorrow, weekly for 12 weeks and her herceptin for a year. So anxious re side effects particularly nausea and vomiting as due to previous abdominal surgery I am unable to be sick. Going to try the cold cap, fingers crossed. Good luck to you , let me know how you get on. I also have a picc line. Can't believe this is happening and will I ever reach acceptance.

G
Member

Re: January 2019 chemo starters

Hi D, Stuck at 14 and everyone else, after my first EC on 4th, I have been feeling very nauseas and screen time not helping this as it seems to be a feeling in my head and my stomach but other than this ok. Thinking of u all so much x
Member

Re: January 2019 chemo starters

How are those of you who started on the 4th doing? Is it quiet because you are having so much fun it and about? (Crosses fingers) xx
Member

Re: January 2019 chemo starters

Hi Alif.  I start 12 weekly Taxol sessions tomorrow at 9.30am.  It's the fear of the unknown that gets us isn't it?  But we'll be absolutely fine, you know.

 

I have a huge mound of stuff put aside to take with me - everything from cross-stitch to sherbert lemons - you'd think I was going on safari!

 

D

Member

Re: January 2019 chemo starters

Hi ladies, I’m starting FEC-T chemo on the 9th January so am one of the club too! I went to the doctors for pre-chemo bloods today, I have my information session on Monday and then all being well Wednesday is the day. I’m really scared, more than I thought I would be. I’m ten weeks post mastectomy, the adrenaline post diagnosis has stopped pumping and has just left fear in its place!

Hoping that I can get through the first one ok then hopefully the rest will be ok x x
G
Member

Re: January 2019 chemo starters

Fantastic well done you! I have a second wig fitting this Wednesday, not sure I am going to be feel well enough but it was booked before I had my chemo dates, ideally I think I would do it more into/near the second week from what nurses have told me re the first week and how u r feeling. X
Member

Re: Newly diagnosed starting chemo 8 January

Hi LB , I'm not due to see my oncologist until 14 January , I'm it taking this as my booking in appointment ? I've already had a mastectomy and lymph nodes clearance due to sentinel node being positive I'm HER2 + invasive not sure what else they said , hopefully we can all help each other xx
Member

Re: January 2019 chemo starters

Thanks G and B64- I'm not going to cold cap. My hair is very find and I've already cut it into a pixie which I love! I actually want to bug my head shave and wig styling for the week after chemo- I can't bear any more waiting for things to happen. Those who are a week in, how have you felt? Would I be best waiting nearly a week or doing in 3/4 days after?
B74
Member

Re: January 2019 chemo starters

Stuck at 14 - I'm also a bit older than you (44) with 3 kids aged 7, 11 and 13.

 

My older two are actually more anxious than the 7 yo, but maybe it's also a question of personalities.

 

My 13 yo stayed up til midnight last night, turned out she was making me a book of "50 quotes for tough times"! Very sweet.

LB
Member

Re: January 2019 chemo starters

Hi I'm starting fec-t on Tuesday 8 January.  I've already found the tips on here so useful.  I am very nervous about it all but it helps to know that others feel the same.  Good luck to all of us starting this journey this month.

G
Member

Re: January 2019 chemo starters

Hi Hun, welcome!! I am a little older than you, 43, with two girls age 9 and 11 so different things to think about with this age group I guess than younger ones, very hard managing their emotions. Big hug x
I have just had my first EC today, I cold capped (are you planning too?) and this was fine. Only slight issue I have had is my veins haven’t played ball (they are always a pain even on a blood test) so we have decided that I am going to have a chest port put in in time for next one but that is all, but honestly everything was fine. Obviously expecting more over coming days. Thinking about you as the waiting is so hard. G x
Member

Re: January 2019 chemo starters

Hi! I started a new thread by mistake and can't delete it but this is where I want to be! I start EC on the 11th so a bit behind you all.im feeling like a have to do a massive shopping list to get me through the first week- all I really want is a new outfit!🤔 I'm 35 - is anyone else going through this with small children? Hope you are all feeling ok xx
Member

Re: January 2019 chemo starters

Good luck everyone today. I hope it all goes as well as it can do for you. Amazing fasting B74 I hope you reap the benefits, it’s an impressive thing to do before chemo.
I am now 8 days in after my first FEC-T my appetite has definitely increased and I have eaten more, mainly to stave off nausea and the side effects of the steroids 😕 I have been eating extremely well. 5 a day, whole grains, mostly plant based. I felt pretty grim days 3, 4,5, and 6 . Feelings of nausea and general grimness. However, Day 7 I turned a corner and felt so much better. Back to the land of the living. I baked a banana loaf, just to do something normal again! It was yummy😊
I have found arm and hammer sensitive baking soda tooth paste to be good along with rinsing my mouth with a bicarbonate of soda, salt and water mouth wash . I’m also taking homemade Manuka honey, lemon and root ginger and the antibacterial and anti sickness properties are definitely helping.
Loads of luck lovely ladies. We can do this 💪
Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Well done first timers!   Thats one ticked off... now just rest up and follow your body.  Well done B74 on your fasting.. crikey I couldn't do that... in fact I found I ate more.. hence the need to diet now! 

Big hugs to you all.

Kip

xx

B74
Member

Re: January 2019 chemo starters

Thanks G. Some people apparently fast fairly easily but I find it very tough, so would never suggest it unless someone was really committed (over the last couple of days I’ve had to keep re-reading all the research & anecdotal reports to keep myself on track!).

I know we’re on slightly different regimes but E and A are related, and everything else is the same, so maybe similar side effects??? Although reactions are very individual & there’s a big spectrum, so hard to really compare.
G
Member

Re: January 2019 chemo starters

Wow, amazing, well done B74 🤩
Have to let me know how your fast goes, not sure I have it in me but would be intrigued to know how you find it. Rest up now, take care G
B74
Member

Re: January 2019 chemo starters

PS Good luck and hugs to G and MaMaJuJu - not long now! I hope it goes equally smoothly for you. 

B74
Member

Re: January 2019 chemo starters

Hi everyone, I had my first AC (doxorubicin and cyclophosphamide) about 4 hours ago and I'm glad to say the infusion itself was very straightforward and not bad at all. The nurses were lovely and reassuring. I also met a young (mid 20s?) girl who is now on Taxol having completed 4 rounds of AC so she had lots of advice for me. Now I just feel a bit dizzy/spacey/weak - but given I haven't eaten for 57 hours I don't know if that's the drugs or hunger!! I reaaaaallly hope I am feeling up to eating tomorrow at 4pm when my fast finally ends!!

G
Member

Re: January 2019 chemo starters

❤️
Member

Re: January 2019 chemo starters

Thinking of you all today ladies.  I hope everything goes well - in fact I know it will!

 

D

G
Member

Re: January 2019 chemo starters

Hi ladies, mine is at 9:30 today...UK time 😉
Hope yours goes well, thinking of you both xx
B74
Member

Re: January 2019 chemo starters

PS G I think you’re starting on the 4th too - what time is yours?
B74
Member

Re: January 2019 chemo starters

Thank you everyone. I’m feeling a bit calmer now, wasn’t helped by the fact I’m fasting and was feeling dreadful yesterday - but something must have switched over & I now feel great.

MaMaJuJu - mine’s at 1:30pm but I’m in Australia so I think that’s 2:30am London time.

Hugs to you too - hope it all goes well!!
Member

Re: January 2019 chemo starters

Hope everyone's chemo goes well tomorrow x

Member

Re: January 2019 chemo starters

Thanks Kip and Fluffysunshinepants for your kind words.

 

B74, we are in it together as I also have my chemo tomorrow. I wish you all the best and will be thinking about you. Sending you big hugs.

 

I am anxious too but know that it's only going to be for approx. 6 months out of my life.

 

We can all do this.

 

What time is your chemo? Mine is at 1030.

 

Will let you know how I get on. 

 

Wishing everyone else that is getting chemo tomorrow all the best.

 

xxxx

 

 

 

 

Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Deep breaths B74.. I remember that feeling, I was beside myself with worry. I actually sobbed for the first hour or so of my chemo but the nurse was so lovely.  If you are having FEC they have to adminster it manually (rather than having a drip fed one) so the nurse sits with you throughout which was really nice as she chatted to me all the time and put me at ease.  They are always checking for leaks or problems so don't worry nothing untoward will happen.   No 2 chemo onwards I used to take a different friend with me and we would sit and chat, eat and drink and pass the time..

Big hugs to you all this week....

Kip

xxx

 

B74
Member

Re: January 2019 chemo starters

My first chemo is in 24 hours and my anxiety is now sky high. There are so many things to worry about but top of my list right now are an allergic reaction or leakage out of the vein. I really, really hope it’s an anticlimax.
Member

Re: January 2019 chemo starters

Hi all, just popped over from the December thread to wish you all well. Commenced my chemo Christmas eve and so far ok.

Your probably all caught up in a whirlwind of tests, scans etc, be gentle with yourselves and don't be afraid to ask if your unsure of anything etc. Your nursing team are always willing to help where they can.

Best wishes to you all x
Member

Re: January 2019 chemo starters

Hi All, 

 

Welcome Rachel50........starting to feel nervous now but I just want it to happen. I go for my pre-chemo appointment tomorrow along with my ECG and Echocardiogram. 

 

I also got my hair cut last Friday, not quite the Pixie look but much shorter than normal just to soften the blow when it actually happens. I am always thinking that it is going to grow back. 

 

I have ordered the Travel Sickness Bands along with other bits and bobs from Amazon. 

 

Kip, thanks for your tips about going to the toilet. I shall pop both of them on the shopping list.

 

Not long to go now girls........I hope you are all doing well. 

 

Sending lots of love MMJJ xxx

Member

Re: Newly diagnosed starting chemo 8 January

Hi LB, hope everything goes well for you on 8th January. I had the same chemo regime as you, I started Oct '17, so if there is anything I can help you with, please ask.  You might want to want to post this on the January '18 thread so you get the support of other ladies having chemo at the same time as you x

Member

Re: January 2019 chemo starters

Hi ladies, I'm from the Oct '17 thread. I just wanted to add that I wore sea/travel sickness bands whilst having chemo and for a few days afterwards and didn't suffer with any sickness, so they might be worth giving a try x

G
Member

Re: January 2019 chemo starters

Just wanted to say hi Rachel and looking forward to sharing etc over coming months x
LB
Member

Newly diagnosed starting chemo 8 January

I’m starting chemo FEC-T on 8 January. Newly diagnosed HER2+ breast cancer and i’m very nervous 😟 reading some of the posts here has really helped 🙂 thankyou
Highlighted
Member

Re: January 2019 chemo starters

Hi I start chemo January 10th so am glad to join this thread. Feeling very scared . Will be thinking of you on the 4th x