69142members
363107posts
cancel
Showing results for 
Search instead for 
Did you mean: 

November Newbies 2013

Highlighted
Member

Re: November Newbie's 2013

Hi FJ glad you found your way here! Told you they were a nice bunch 🙂 I am having a serious hair loss day! Thinking tonight might be the night I ask my mum to shave it off 😞 Hate the thought of a bald head, but think once it's done it's done! Not sure how my mum will handle it. Haven't asked her yet!! Can't help with the Seroma it's something I didn't have a problem with, thankfully. Sounds like a nightmare though!

Sam I hope you have a nice SE free day. Xxxxxxx
Highlighted
Member

Re: November Newbie's 2013

Hi FJ, welcome to November, Ive also had one dose so far, yesterday and so far so good. I also had full clearance bit i had a drain for 9 days and although a pain in the rear it seems to have stopped seromas forming so worth being stuck in for 9 days ! We have a Facebook group and most of the ladies on there from this forum have now shaved their heads. I used cold cap so i am hoping it works but if not then it will have to come off. I don't want wispy bits as i think it looks worse and all of the ladies are posting pictures of their bald heads on facebook - it is a private group !
Hope you are ok,
Sam xxxx
Highlighted
Member

Re: November Newbie's 2013

Hi All,

I had my first dose of FEC 3 weeks ago, 2 more Fec and 3 T to follow.

Have done amazingly well with little side effect however still having problems with seroma, I had full axilliary nodes removed 6 weeks ago, 4 times drained since and now skin quite red and been put on anti biotics in case there is an infection.  Very frustrating as healed really well after the op and now possibly the next treatment delayed because of this.  Anyone else had similar problem?

On another point, most of my hair now fallen out, started on day 13, my OH cut really short what remains but now very very whispy, does everyone shave at this point?

Best wishes to all November Newbies xxx

 

Highlighted
Member

Re: November Newbies 2013

Morning, i'm still feeling ok, did drink about 4 litres of liquid yesterday so maybe i'll do that again today. I woke up at 3 though and that was without steroids so god knows what i'll be like tonight, i didn't want to get up as it was so cold. i've taken my meds today including the anti sickness so hopefully they will work and although i feel tired that seems to be it for now so fingers crossed again.
I have Alex off again today and although he still has his cough he is a chatterbox so no rest really for me
Hope you are all ok,
Sam xxxxx
Highlighted
Member

Re: November Newbies 2013

Hi Swanseagirl,
If you just look up on the top right side you will see messages and just click on that to send me a private message xxxx then i can tell you how to find me on facebook
Sam xxx
Highlighted
Member

Re: November Newbies 2013

Hi Swansea Girl

The scarf tying is easily solved CHEAT buy an elasticated one that you just put on like a hat 🙂 I didn't use the cool cap and so am losing my hair 'big time' today. Think I will bite the bullet and shave it at the weekend! I think once it's gone and everybody has got used to seeing me with wig/scarves I will feel more relaxed!! I HOPE!!!

Hope everyone is doing well. Xxxx
Highlighted
Member

Re: November Newbies 2013

I've had very few side effects ( day 10) but wonder about hair , though I did manage the cool cap. How was first trip out with scarf etc ? I can't even tie shoelaces so God help me to get that look right !
Highlighted
Member

Re: November Newbies 2013

Hi Sam - I'm not v good with technology so if you can add me to Facebook that would be great. How do I private msg you ?
Highlighted
Member

Re: November Newbies 2013

Thanks - day 10 tomorrow so I'm going to take it easy. But feeling fine . How are you ?
Highlighted
Member

Re: November Newbies 2013

Hello all - I had my first FECT on 20/11/13 following diagnosis on the 4th. It has been a whirlwind and feels totally surreal. I'm still in work full time but not going in tomorrow or Mon/Tue as fear of infections ( teach in secondary school 1400 pupils with possible germs !)
So far I've had no side effects to speak of : some nausea , acid reflux and tiredness and it feels as if I've bitten the inside of my cheek .
My next dose is 11/12 /13 ( I like the beauty of numbers so I think that will be a good session) and I'll be 1/3 of my way through , hopefully.
I am glad to be sharing this journey with you
Highlighted
Member

Re: November Newbies 2013

Hi Sal & Tracy
Back home, had a big meal - my appetite reappeared !!! Sat on sofa watching TV drinking water - 3 pints so far and getting a bit bored of it now 🙂 I feel a bit tired but that is all so I'm hoping with all the meds I came home with that they keep me going. Going to do nothing tomorrow, my best friend is coming over and then district nurse in afternoon to check dressing on the line and she is bringing the injection as well.
Sal sorry you are struggling with work but u do need to put yourself right and looking after two kids is such hard work as you are permanently on call. I'm sure your family will understand x
Good luck for tomorrow Tracy, is this your first one, I can't remember. It was really fine today even with the drama and all the nurses were lovely so I know you will be fine
Big hugs to both of you
Sam xoxoxox
Highlighted
Member

Re: November Newbies 2013

Hi Sal, thank you for your kind words, hope you feel better soon XXX

Would you be able to maybe work 1/2 days or is that not possible in your nursery? I had a call from occupational health today saying usually ladies take up to 1 year off with breast cancer. Like you I want a little sanity and have asked to work 1/2 days however should I not feel well then I won't be available. They're fine with this and should it get too much as treatment progresses I'll then go on the sick. I guess it's all a case of see how you feel.

Take care everyone, I'll let you know tomorrow how the first FEC goes ( it certainly is FEC!) Tracy XXX
Highlighted
Member

Re: November Newbies 2013

Hi Tracy

Just wanted to wish you luck for your first Chemo tomorrow, I hope all goes well. I'm sure it will. I will be thinking of you and sending you a big hug. Xxxx

I'm currently dealing with a cold and cough, and losing my hair by the brush full! While working full time (am starting to question, how much longer I will cope with working!) it's a catch 22 situation, I want to work for my sanity, but my body clearly needs rest! Think I might chat to my bosses about either seeing if someone could do the older child's pick up for a while, or about going down to a 4 or maybe 3 day week, after Christmas! 😞 not what I want, and it makes me feel like I am failing, but I also know IF I want to get though this ASAP then I have to look after myself!

How you feeling this evening Sam? Hope all is okay! A drama free evening would be nice I'm sure 🙂

Hi to everyone else, good luck to those who are having treatment in the next few days, big hugs to anyone who needs them.

Sal xxxxxxx
Highlighted
Member

Re: November Newbies 2013

Sam your post made me smile re fire alarm - just your luck after what you've been through!

I've had a wobble day today, found a blood blister in my mouth and was convinced it was something sinister. Luckily I had a dental checkup before starting chemo and all ok. Looks like I may have bit my cheek when sleeping. I've had a few tears today, I feel great in myself and really don't want to go tomorrow and poison my body. I know I have to but wish I didn't - sooner I start the sooner I'll finish.

I'm glad people are doing OK who started meds today

Welcome to the group Tazlzles

Love and hugs to you all XXX
Highlighted
Member

Re: November Newbies 2013

Thanks Emma 😊
Highlighted
Member

Re: November Newbies 2013

Hi Tazzles welcome to the group, it is a stressful time for us but lots of support on here. We have a Facebook group as well which is private so if you would like to join just send me a private message and ill let you know how
Sam xxxc
Highlighted
Member

Re: November Newbies 2013

Hi everyone I'm back home now after my second attempt at first dunking, the Hickman line is amazing, so good to have all drugs through it and so quick once the fire had been sorted !!! Had longer to sit coz of the cold cap but felt ok so now sat on sofa with Alex watching Tom and jerry and drinking lots if water. Told the nurses about my side effects so now have new anti sickness, heartburn, movicol & mouth meds so I should hopefully be better. Just downing another pint of fizzy water and feeling ok
Sam xxxxx
Highlighted
Member

Re: November Newbies 2013

Hi Nic, sorry to hear you're having a difficult day.  I've felt very tired this time too and sometimes you just have to accept that you need to rest even though it is very frustrating!  I was supposed to go out last night but ended up cancelling as I felt so tired.  Instead, I had a long hot bath with lavender bubbles and an early night and slept really well.  You will start to pick up again soon and feel more like doing things!  I've got my third go on Friday the 13th too but remember that's another one down and nearer to the finishing line!!

 

Big hugs

Emma xx

Highlighted
Member

Re: November Newbies 2013

Hi Emma hope you are doing well was back at work for 2days only really had heartburn but today couldn't manage very tearful and no energy just resting , got appointment Monday for my wig , haven't lost any hair yet but only had one dose , so I think it will kick in on the second which is Friday 13th not the best date for me as that was when I was diagnosed 13th sep with BC, keeping positive and was good to get back to work for a little while, hope everyone else is doing well, and we all have a good Christmas

Take care hugs to all xxx
Highlighted
Member

Re: November Newbies 2013

I've just got back from my first chemo session FEC-T. So far feeling not too bad, just a bit spaced out and a bit panicky waiting for the nausea to kick in. 

 

I've felt like I'm on a roller coaster this last month and am still going through bouts of non-stop crying, panic, anger etc. I am wondering if this will ever go away. Will I be constantly on edge even after the treatment has stopped waiting for 'the beast' to come back? I know that sounds awfully pessimistic but sometimes I just can't muster up the 'postive' thoughts that people keep telling me I should have.

 

Anyway lots of love to everybody out there.

Tazzles xx

Highlighted
Member

Re: November Newbies 2013

Aww Sam, hope you managed to complete it this time!!  Hugs Emma xx

Highlighted
Member

Re: November Newbies 2013

Seriously Sam you don't do things by half! I hope things calmed down after that and you are finally through dose 1! Just 5 to go 🙂 xxxxxxx
Highlighted
Member

Re: November Newbies 2013

Never a dull moment. I'm all hooked up on the cold cap in the chemo suite and the fire alarm went off so we had to be evacuated, me, my drip and my cold cap machine !!!!
Sam 🙂
Highlighted
Member

Re: November Newbies 2013

Thanks for the welcome folks, and good luck with your own treatments.  It sounds as if each cycle may be different-no real hard and fast rules for this, only that we know we will get through it. Thanks again.

Highlighted
Member

Re: November Newbies 2013

Thanks everyone just on my way now and will be in touch later xxx
Sam
Highlighted
Member

Re: November Newbies 2013

Good luck today Sam, sending hugs and positive vibes your way 🙂 xxxxx
Highlighted
Member

Re: November Newbies 2013

Hi Sam good luck for tomorrow. Are they going to give you all the chemo drugs again or just part of them ? Xxx Tracy
Highlighted
Member

Re: November Newbies 2013

Hi Lozzaj welcome to NN. I am on my 3rd FEC 4th is due next week on 5th Dec. I have found 1st felt queasy for 3/4 days 2nd 6 days 3rd 8days before feeling back to normal also had a bit of bad indigestion on 3rd but been able to function through it all and been feeling great since day 8 . I have the normal anti sickness meds for 3 days then take metoclopramide as and when so took up to day 8. I hope you are ok with your next one if not ask for different meds I've heard EMEND is supposed to be really good for anti sickness med xxx Tracy
Highlighted
Member

Re: November Newbies 2013

Hi Tracy
Chemo attempt number two at 8.30 in the morning - they better have tea and toast on the go at that time ! Fingers crossed they manage it this time x
Hope you are ok
Sam xxxxx
Highlighted
Member

Re: November Newbies 2013

Welcome lozza
Can't offer any advice for you I'm afraid as I've had I've failed chemo attempt and now gave a Hickman in so chemo tomorrow but I have also heard that the T part is less aggressive and not so bad for side effects so here's hoping
Sam xxxx
Highlighted
Member

Re: November Newbies 2013

A lovely lady on this forum called Lynne (mac123) was treated at my hospital ( Wolverhampton) and has put my mind at ease as the CA153 blood test is standard with chemo here. Feel more relaxed now. It's amazing how the smallest thing thing can set the mind racing.

Welcome to the group Loxxaj, sorry you're having a tough time. I don't start my chemo until Friday so can't offer any valid advice but hope someone will be along shortly to help you.

Was it today you had your chemo Sam? If so I hope it all went ok. Take care all. Tracy XXX
Highlighted
Member

Re: November Newbies 2013

Tracy I'm afraid I don't know about this so can't advise you
Sam xxxx
Highlighted
Member

Re: November Newbies 2013

Hi All, Just had pre assessment appointment for chemo and I was shocked to see CA15-3 on the blood test. I thought this was used as a tumour marker! As far as I was aware I'm having chemo as a preventative, hope I've not missed anything! Have others had this blood test? I've not had a CT or bone scan. I've asked the question on the main chemo page to see if others are having this blood test - it's made me very panicky now.

Highlighted
Member

Re: November Newbies 2013

Hi all, this is my first post here, had my second dose of FEC chemo on Friday, and now its Tuesday I feel able to type!  I had really strong anti sickness pills after needing an injection after the first dose three weeks ago, and I just wondered if the stronger dose I was given this time prolonged the nausea, i.e. not 'letting it out?'  I really felt unable to function for three days, and althougth I was more sick after my first dose, the side effects were over quicker.    Any advice would be great as I'm dreading the next one....although just because I'm still a bit rough today I guess. Also, I'll have the doxy treatment for my last three-I heard I might be less nauseous for this?  What should I expect for them? Thanks all.

Highlighted
Member

Re: November Newbies 2013

Hi Tracy and Sam,

Sorry haven't been on for a bit. Been busy with work, and trying to get over my infection and now have a cold! The joys of winter! Then just as I thought things couldn't get any worse, my hair started to fall out last night! Even though I knew it was going to happen, I did have a sudden feeling of 'oh I'm going to be bald'?? Sounds so stupid, but I spent the last few weeks trying to forget about the chemo and being normal! I hadn't thought about my hair 😞 going to see how things go, but if it starts looking awful I might just get it shaved off at the weekend! But I'm not quite ready for that yet!

Tracey good luck with your first dose. Promise you the actual Chemo isn't as bad as you think! But definitely share your feelings and worries with people on here or your friends/families. I am slowly realising how important good support is!

Sam well done on getting your line in. My PICC line is booked in for next week. Just hoping I can get rid of this cough and cold before then. Fingers crossed my bloods are okay! Good luck with the Chemo tomorrow, let's hope it's drama free this time.

Sending lots of love and support to everyone else. Will try and read through properly later.

Sal xxxxxxxxxx
Highlighted
Member

Re: November Newbies 2013

Hi Tracy
All good here now ! Had Hickman today and though uncomfortable to fit only took about an hour. Had a lovely nurse who talked me through it really well and there was a lot of pushing pulling and tugging but it is in and no more needles now. It is quite neat and higher up than I thought so I've tucked it in my bra and a few hours on it is sore but that will go 🙂
Worst thing than that was my lovely anti sickness drugs bunged me up and I spent all last night up and down to toilet with no luck so that kind of took my mind off the line ! Anyway, the medicine I took for that eventually worked tonight so I've just been sleeping all evening, ignored my phone and TV ! Feel better now and I have my first chemo after my failed attempt last week again this Thursday xxx
At least now I can ask the nurses for different anti sickness drugs, some indigestion medicine etc - joyous hey ?
Hope you are ok and also Sal as haven't heard from you for a few days
Sam xxxx
Highlighted
Member

Re: November Newbies 2013

Hi ladies, hope you're all thinking positive and are ok. Hope the Hickman line went ok Sam. Hope you're feeling ok Sal, it's been a while since you last posted. I'm due to start chemo on Friday and starting to get jittery, seems mad poisoning yourself when you feel so well (but I know it's for the best). Take care everyone. Love Tracy XXX
Highlighted
Member

Re: November Newbies 2013

Hi Emma
Hope you feel a bit better yes the sickness drugs do have an effect I found that my face swelled up a little , like when you have a allergic reaction to something, And hot all the the time, on and now got heart burn , managed to eat more tonight which is better.

Will just take work as if is, they are being really good which helps with the situation.

Glad you had some company today it's nice to know people are there when you need them 😀
Hope you feel better tomorrow

Hugs nic 😀 x
Highlighted
Member

Re: November Newbies 2013

Hi Nic

 

I had my second dose of FEC on Friday and hadn't felt too bad till today.  Seemed to hit a wall of tiredness and have been a bit teary today.  I wonder if its the steroids for the anti sickness as they can affect mood but luckily today was the last day for them so hopefully I'll feel better tomorrow.  My parents popped in to cheer me up which was nice.  Otherwise, I've spent most of the day dozing on the sofa.

 

Glad to hear you're coping well after your first go and well done on going back to work.

 

I decided to be brave and posted a picture of my new spikey hedgehog look on facebook yesterday and got some good comments so feeling better about losing the hair though its getting thinner by the day!

 

Hope everyone else is doing ok!

 

Hugs

Emma xx

Highlighted
Member

Re: November Newbies 2013

Hi Emma, I have had my first dose if fec on Friday and to be honest apart from the sickness and no appetite and little bit tired I am good , going back to work tomorrow until the non immune system kicks in and will have that time off, not letting the cancer make my life a misery, which is hard I know , like you mine was only found through biospy not mammogram, but all clear lymph nodes which was good.

Keep positive and talk to as many people as possible it does help

Take care nic 😀
Highlighted
Member

Re: November Newbies 2013

Hi, the FEC (5FU, epirubicin and cyclophosphamide) part is given separately to the T (docetaxel) part (FEC-T). Sorry I'm not sure about carboplatin.
Highlighted
Member

Re: November Newbies 2013

Thanks for the replies ladies, lulu I will ask about that. I have my first chemo on Wednesday ( they have changed the date three times!) one question... What do the abbreviations mean? FEC etc? And what abbreviation do I use for carboplatin and dosetaxel with herseptin? 🙂

Highlighted
Member

Re: November Newbies 2013

Hi Lucramsey, sorry to read re secondaries, welcome to the November Newbies XXX
Highlighted
Member

Re: November Newbies 2013

Thanks Lulu xox
Sam
Highlighted
Member

Re: November Newbies 2013

See im so naughty i never went to sleep.... The f is is the mildest bit of FEC and often they dont give it and just give EC so hopefully you wont be too bad with it.

If you've done a drain a hickman is a walk in the park in comparison. Xxxx
Highlighted
Member

Re: November Newbies 2013

Hi Lulu
I just had the F bit of the FEC but feel ok. I got wacked with a wall of tiredness this morning but fine now, had a beer tonight but does not taste the sane so that is the end of that for a while which is fine for me.
I'm not looking forward to having the Hickman line fitted next Tuesday , I know it's better in the long run but the thought of having something dangling out of me after having that drain in is not something I wanted 😞
Love sam xxx
Highlighted
Member

Re: November Newbies 2013

Before i go... Sal my treatment caused a rash... Strted off with couple of spots on my chin then spread all over my face, scalp, chest and even in my ears and up my nose... Im now on regular piriton which i have to take 4 times a day all the way through treatment.... But its working... Im spot free... But i hated having them.... I felt like id fallen out the ugly tree and hit every branch in the way down... Wasnt a happy bunny so i feel your pain.

And luc i had carbo and tax x 6 two years ago when i had my recurrence.. Was hard going but got through it so good luck with that combo xxxx
Highlighted
Member

Re: November Newbies 2013

Hi lucramsay

Spoke to you on your recurrence thread... Also have lung mets but mine are triple neg... Im on a trial which actually you maybe could have gone on instead of chemo but maybe your hosp doesnt offer it... Its for TNBC and HEr2 mets and its to be given for mets before any other chemo.... Its having very good results for TN and even better for Her2, but you can only go on the trial if you havent had rads in the area where your mets are and luckily i havent... Iv had rads 3 times... To right breast, left breast and left clavicle but mets are in right upper lung under right clavicle... Mind you part of me wonders if id had rads there would i actually have a lung met LOL. But no point worrying over something i cant change hey.

The nov FB Group is a great place for support... So please get sam to add you.


sam which chemo was it they gave you? Some are more likely to make you sick or give you SEs than others... So you might be fine. Just a bit pants you have to do it all over again and all your cycles will be off.

I had a week delay due to a gum infection after cycle 1 so now means that as well as having treatment on christmas eve and boxing day... Im also having it on new years even and the 2nd of jan (its a holiday in scotland) so no partying for me at xmas or hogmanay!

Off for lunch in glasgow with some of my breast buddies tomorrow though so better get some kip.

Nitey nite november newbies xxxx

Highlighted
Member

Re: November Newbies 2013

Lucramsey, sorry you are back in this situation but yes please join us, we also have a Facebook group so just send me a private message in here if you want to join us on there
Big hugs
Sam xxx
Highlighted
Member

Re: November Newbies 2013

Hi

I have just had first dose of fec , not too bad more of a emotional time, feeling a bit sick on and off, but keep the medication topped up, it's okay, the chemo nurses are lovely and take good care of you , keep positive and it goes help to talk and hear different experiences.
Take care sending a hug
😀