Starting Chemo in February 2014?

[Sue123]

Hi girls, just a quick line to let you know I had to miss last weeks chemo due to kidney pains and problems which came on just after my triple negative bc diagnosis in December) and had a cystoscopy and bladder stretch last week. Nothing found again and nothing from pelvic ct scan which is great but these pains are getting me down. 

Anyway I had my chemo yesterday and am holed up at home feeling a bit isolated. My lovely 83 year old mum came to visit and bring me lunch, feel so guilty I should be looking after her.

I do feel for you Caz as any symptom is a worry on top of what we are going through. However try to be reasurred ( as I am trying to be too) that you have had your symptoms listened to and they are acting on them and giving you professional advice re having more scans. My BC nurse advises me to have a worry and then try and 'park them' for the rest of the day. Easier said that done i know

Take care girls and thank you for being there for me xx

[Caz13]

Hi. Back from the treatment. My poor partner had to literally drag me there! Thank you for your thoughts jaffacakes and Alice. I saw a different oncologist today who reiterated what consultant had said. He said we need to keep an eye on symptoms but it was too early for another scan as they can do more harm than good. He said however that he really didn't think it was related to anything in my brain as it wouldn't have had time to develop in 4 weeks. I'm praying he's right. He thought my arm may be because of mastectomy and leg he said would normally be more related to nerve in lower spine. headaches like I described - stress (no surprise there!) stiff neck the same. So sick of worrying! Hope you are all doing ok and hope the sickness has stayed away Hazel. I'm hoping this emend is a miracle worker 🙂 xxx

[alice45]

I'm getting daily heachaches along with the rest and just assumed that it's the fault of the chemo - everything else is!

[Jaffacakes]

Caz, really good luck for today and fingers crossed that the emend ensures you have a better experience. That does sound as though you have had a lot of stuff to deal with and no wonder it's taking a lot of strength to go back for more. The headaches and numbness sound horrid, and I really think it's worth bothering your consultant again about them. Obviously he's going to know that nothing can't have grown in that time - so you don't have to worry that it's a tumour, but there are other things it might be that should be checked.

[Caz13]

Hi ladies. Poor you Hayley. I can't imagine how you must be feeling. I hope the little fella is doing well. I'll be thinking about you. Hope your arm is ok jaffacakes. It's a pain having to go in to see about anything. I sometimes think this whole thing is turning into a full time occupation! Hope you stay nausea free Hazel. I have everything crossed for you x
Thank you for all the reassurance re spotting. I have an appointment for a couple of weeks time. It's one thing after another with me! I've been very nauseous, headaches on one side of head and a numb arm and leg. I had a clear brain scan 4 weeks ago and consultant has assured me nothing that would give any side effects would have grown in that time. Still worried though as these syptoms are there all the time 😕 Round 2 of EC tomorrow and dreading it. So much going around my head and ended up in hospital within a few hours of the first. Just don't feel mentally ready. Sorry for the moan, I'm struggling to actually see myself come out of the other end of this. Fingers crossed the emend helps this time. Keep well all of you. I'm thinking of you all xxx

[Jaffacakes]

Had to drop into the hospital today - well, it never exactly is a drop in with all the waiting. A sore spot on my arm needed checking. One ultrasound later and a small blood clot was identified. In a small vein for now, so may not cause any trouble, but they'll keep an eye on it. I was a bit low to have to go into hospital on one of my good days, but it could have been a lot worse. In fact, I think I'm just a bit low about another round of chemo coming up. I just want to be out and about and gardening in the spring sunshine.. Oops. Sounding very sorry for myself. It'll blow over: just a temporary grump. As part of my grump I've just eaten two bits of cake (we're a bit oversupplied with cake at the moment) and now I've also discovered that cake and chemo don't mix for me. My poor tum.

[Jaffacakes]

Hoping things keep steady for you, Hazel.
Hayley, I am so so sorry that your little one is having go through so much. Your poor family. Best of luck for his recovery and I hope you will be able to have your chemo soon.

[Hazelb27]

Hayley I'm thinking of you and your family. Hope your wee one is ok.

Bigpumpkin, I stay in Scotland so it might just be an area thing. Even across Scotland you get different service so it's definitely a postcode lottery. I had metroclopramide for my first FEC and it didn't work at all. I moved into cyclizine and ondansetron and they worked for a while and then stopped. That's why I've ended up on the nozinan and touch wood all is well so far. The domperidone is as and when I need them but have been taking them the past couple of days because last time the nausea and sickness got really bad on day 7 and that's tomorrow. Last time I ended up at A&E because I couldn't even keep down water. Praying the same thing doesn't happen again.

Lots of love

Hazel x

[Rowan44]

Ah Hayley I hope he goes on alright and is back being cuddled with you soon xx sending big hugs to you both xx

BigPumpkin I am doing grand swimming along nicely this time , last one seemed far harder and I even went out for a walk this afternoon was expecting this to be a grotty day but its not happened yet  fingers crossed it continues  the ondansetron and domperidone seem to be helping alot this time 🙂 🙂

[Bigpumpkin]

Thinking of you and your little one Hayley. Im sure he is in very good hands. I hope all goes well xxxx

[lowfatlovatt]

I should be having fec 3 now, instead im pacing a room counting the seconds waiting for my 11 week old baby to come out of theatre, id rather be having chemo 😢😢😢 xxx

[Bigpumpkin]

Wow Hazel, you sure did come up trumps at your Hospital xx perhaps its an area issue. I live in South Wales ? Last week when I eventually got a prescription for 10 Ondansetron I felt like I had won the lottery lol !!! I do receive 1difflam and 1 Corsodyl.
I have not had Domperidone- are they better than Metoclopramide ?, as they seem to have no effect on me 😞 ?

Rowan and Alice, hope you are both feeling good today x Alice keep asking those questions at Chemo !! And good luck for next week x
Jaffacakes, thank you for the advice. I really need to sort out a good exercise regime, at the moment I think I literally am turning into a big pumpkin!! I never lost my Christmas weight- what with a WLE before Christmas and then ANC early Jan, I havnt done an ounce of exercise. Im going to visit my work colleagues next week, where we have a weighing scales, I bet I'm going to be gutted !!!

Good luck to anyone. Who may be having Chemo this week xx

[Hazelb27]

Hi all

I'm amazed at the difference in the amount iof meds we all get for essentially the same thing! After reading the posts, I feel very lucky to be getting anything I need. I left the hospital on Thursday after FEC 2 with 60 domperidone, 14 nozinan, 28 omeprazole, 9 steroids, 2 corsodyl mouthwash and 2 difflam mouthwash!!! When I saw the onc in the Tuesday, we went through my first horrible experience and he wrote a prescription for all of that just in case. I'm on day 5 and apart from being sick on Friday I've been not too bad since. Felt a bit seedy tonight but two domperidone and a nozinan later and I feel ok. I was severely nauseous last time and the nozinan has been a god send. That said, the nausea didn't kick in til day 7 so I may still have that to come.

A special cheer to Rowan for being half way through but sorry you're missing your daughter and your other half.

Love to you all and hope you all feel good soon.

Hazel x

[Rowan44]

Yeah I was in a funk last week enjoying feeling well and not looking forward to the bad days , am really good today on Day 4 expecting the drop tomorrow tho no more steroids

[Jaffacakes]

Glad you're feeling better, Bigpumpkin. My most recent conversation with a doctor about my chemo arm had him in favour of exercise. In my case a sore PICC line had led the nurse to say don't aggravate it, but the doctor was emphatic about keeping exercise up.
Emend is for acute sickness (I learned). So I got a dose on the day and then one for each of the following two days. My hospital is stingy, so I only get one take home dose of ondansetron plus lots of domperidone, but the GP cheerfully gave me extra ondansetron.
Next FEC (number3) is on Thursday. Really really not looking forward to it. Just enjoying feeling good again now and I hate the idea of being out of action again.

[Rowan44]

Hi gang FEC 3 Day 4 

I am doing OK still on steroids so feel boosted at present able to cope with minimal tasks LOL baked beans on toast for lunch yesterday (fibre)  but did a roast lamb shank last night with the veg plated up 2 plates , got one left for tonight so am not starving ! The dust can stay in the house for a while 

Bigpumpkin and Alice45 I get 6 ondansetron ( 1 tablet twice daily for 3 days ) and domperidone to take as and when a box of 30 of them . I have metoclopramide injections on stand by if I am really feeling sick usually find I need one on the first day and I do it myself ( hard core me ! ) but district nurse will do it . I also find omeprazole helps with nausea and heartburn so maybe ask for this too ? 

I expect to be fatigued and horrible tomorrow and wed as they are the worst days once the steroids have stopped  , hey ho I will be bouncing back by the weekend and hopefully my girl will be back with me later in the week if her cold clears 

R xx

[alice45]

Hayley, so sorry you have this added worry. Do hope all is well soon and you are back home with the family.

Bigpumpkin, I was given Emend as an IV before the chemo last time, so that's another possibility. I finally achieved a prescription for Ondansetron and was given a week's worth. But I have to say that neither has banished the dreaded nausea for me - I'm obviously a hopeless case! Day 15 of FEC 2 for me today, and low level nausea is still there. I'm beginning to think I shall just have to learn to put up with it for the next 3 months...

[Bigpumpkin]

Love to you and your little one Lowefatt, I hope all will be well and you will both be home soon xx

Rowan I hope you are managing without your daughter. Poor you (and her of course ) its a very tricky situation to be in but you just cant afford to take the risk . Crikey if you only could see me sometimes in Tescos, one unknowing shopper had me pinned up against Tesco Finest one day she was coughing away , How I stopped myself from just getting on my hands and knees and just crawling under her trolly to escape- I still dont know !! Lol.

For me its Fec 2 day 11and I feel grrreat !! Sickness has finally gone !!! But I was just wondering does anyone sometimes get a sore Chemo arm ? When I try to straighten my arm it sort of hurts in the crook of my arm. I have a slight bruise there from my last pre- chemo bloods, but its sore further along too. Not sure if I should rest it or try to exercise it? Any advice appreciated xxx

Another question, hopefully I will have the all elusive Emend for my last Fec in 2 weeks but how many tabs should I expect to get ? I am also hoping to get Ondansetron too, usually I only get 3 and I have to arrange more when they run out. Does anyone get more than 3 ? Sorry for lots of questions but I really want to be prepared next time xxx

Cheers all x

[Jaffacakes]

Rowan, so sorry you have to lose your daughter because of the cold. I know what you mean that it really doesn't feel right not to be able to care for the chikdren when youre ill. And you can't see your fella either! No wonder you're a bit tearful. But colds will get better. And you're half way through!

[Jaffacakes]

Hayley, I'm so sorry to hear that your baby has to be in hospital - and on top of everything you're dealing with. I really hope it's all ok and will be thinking of you.

[Rowan44]

Hi all , FEC 3 day 3 for me , 

I am doing OK so far first night I was a bit rough and didn't sleep for more than a couple of hours damn steroids , yesterday I felt quite sick and a bit breathless and flushed stayed in bed but today I am up and about steroids are keeping me active LOL I feel good . Yes Bigpumpkin I did have the purple cancer kicking boots on  going to have to post a pic on the Facebook group of me wearing them shame I can't post pics on here LOL 

My Fella got back from Austria but has caught a cold so I haven't had a visit we have chatted on line for hours today though and we are booking a week away together before my last chemo so we booked the hotel tonight !! 😄

 Colds seem to be the in thing my daughter arrived here on Friday night I have her with me every other week but yesterday she started with a sore throat and this morning she was far worse , I rang the chemo unit to seek advice and they said given the option they recommend her going back to her Dad while she is ill as I am vulnerable to infection right now. Upsetting isn't it I am her mum I should be looking after her !! 

I get really tearful easily too but I think we all do so I admit I cried after she had gone. ( Lost my slave too she was cooking and cleaning yesterday bless her ) 

My periods are all over the show , my first chemo was also the first day of period and then it was nearly 40 days before I had my next one ! I am usually on a short 23 day cycle so I thought it had stopped them . 

They will stop when I start the tamoxifen though I guess ... Yay ! Can't wait for the hot flushes ! 

Lowfatlovatt we will miss you hope all goes well and you are back entertaining us soon 

Hugs to all xx 

Rowan 🙂 

[lowfatlovatt]

Hey up me ducks
Hope everyone is doing well
Just to let you all know that I wont be around for the foreseeable future, as of tomorrow I'll be at Birmingham childrens hospital with my baby
Stay strong dudes, you are all amazing
Love and hugs
Hayley
Xxx

[Mariecay]

I mean reassure! Lol

[Mariecay]

Hi caz
I had the same re spotting. I haven't had a period in over 2 years but suddenly started spotting. I had all the necessary tests and was fine. I hope this helps to erasure you a little.
Marie x

[Jaffacakes]

Yes, Bigpumpkin, learning to be pushy is definitely handy! I'm also not good at it. But have felt very stung when things have gone wrong when I was just too nice about stuff.

[Bigpumpkin]

Hi all, Fec 2 day 9
Well done Rowan, halfway there !! I was thinking about you and your purple kick ass boots !! Hope the side effects go easy on you, and your bloke spoils you when he gets home xx
Caz, try not to worry, I have had problems with spotting way before I found my lump, I just assumed it was my age (46) my GP was also aware but I think taking every precaution is very sensible.
As for me nausea wearing off but its really wearing me down. Turns out I didnt even get the Emend !! Someting called Enaprimil?? Was so shocked I didnt take what the nurse was saying in properly. Clearly I am not being pushy enough at my appointments/ I am not really a pushy person, but come hell or high water I shall be before Fec 3 xxxx take care all

[Tracy1967]

Mariecay Tax plays havoc with your nose and eyes. Most of the November newbies have had issues with their eyes streaming and sore. I think it's because T takes more eyelashes than FEC. Also as the hairs up your nose go this does tend to run a lot. You can get eye drops from the chemo ward or your GP to help with the eyes but I don't think there's much you can do with the nose. My eyes have started running but nothing too bad, they look more pinky now I've lost some lashes but I still have a few 'die hards' hanging in there along with my eyebrows.

Caz stay positive, your GP is airing on the side of caution.

Well done rowan44, you're half way through 🎉🎈

Good luck to you all

Tracy

[Rowan44]

Well that's my third dose of FEC done and dusted I wore my cancer kicking boots  appointment was at 2 pm so I am wide awake on a steroid high as it was 3pm by the time I was actually hooked up to my line and given the drugs ,  no signs of getting sleepy 

My fella travels back tomorrow morning so I haven't been able to chat on line much to him tonight but my daughter has arrived for the week and has been looking after me , also got doggie cuddles as she has bought the daft springer lab mix we have , he hasn't seen me in the wig yet that will be tomorrow I have hat on tonight drinking black currant juice and listening to some music 🙂 \m/ 

Hope all you valentines are doing well this weekend and those who are in a good week have a super fab weekend ... I think mine will be less so but hey I am HALF WAY !! 3 TAX to go

[Hazelb27]

Caz I'm sorry to hear that. As if you've not got enough on your plate! The GP is probably just being cautious so try not to worry. My periods have been all over the place since this all started so I'm putting it down to stress and hoping its the same for you.

Fingers crossed everything is ok. Sending you big hugs.

Hazel x

[Caz13]

Thank you for your reply Jaffacakes. No, they said it would be completely unrelated. Fingers crossed its nothing x

[Jaffacakes]

Oh Caz, that really really is not what you need to hear right now. I hope they get on with the tests quickly so you can be clear where you are. And I thought there were only some cancers that had a link to BC. Is cervical cancer one of them? I know what you mean about coping: there is only one way to go and that is forward with all of this. Sitting down and refusing to budge is appealing, but isn't going to get us very far..

[Caz13]

Hi everyone
Glad you got your second dose ok, Hazel. Hope you are managing ok. My eyes are sore, Marie. Constantly gritty and dry but I am on EC not FEC. I hope your nausea is getting better Bigpumpkin. I'm with you on not knowing if the chemo is working jaffacakes. It's hard to go through all of this and not know if its having any effect.
I've been spotting a few days before my period for the last 3/4 months so my gp has referred me to the hospital for cervical cancer tests! He said as I already have cancer I am predisposed to it so we better check. My brain is overloaded and I had a complete meltdown being told this. Never mind, I've realised it's pointless not coping as I have no choice! Take care ladies xxx

[Mariecay]

Hi all
No I don't think so jaffacakes, I was the same after my first chemo but only for a few days, it's 11 days now since it started and it's not letting up! It's worse when I go out into the light (well my eyes are especially) so I'm gonna just have to start wearing sun glasses when I go out I think.
Marie x

[Hazelb27]

Hi all

That's FEC2 done and praying the side effects are less this time. Fingers crossed for more shrinkage!!

About the other weird side effects, I read on the forum somewhere that a runny nose can because of the shedding of nose hair as there will be less hair to catch it so to speak (nice!). I've had a couple of days where I've felt like I was getting a head cold but it didn't come to anything. Might be worth a call to the BCN to get it checked out.

Alice the only skin sensitivity I've had is my inside upper arm after my sentinel node biopsy and is nerve damage. Even the softest of clothes brushing against it was agony. I got nerve pain tablets but they were knocking me off my head so I stopped taking them. Instead I bought a cheap pair of fluffy bed socks, cut the toes and top off to get rid of the elastic and have been wearing that like a sleeve for 6 weeks. It is absolute bliss. It doesn't move and stops anything touching my skin. Not saying it will work for you but might be worth a try just to get some relief.

Hazel x

[alice45]

These weird side effects... Anyone else on FEC experiencing skin sensititivy? I've had to stop wearing a watch as I can't bear it on my wrist - hands and arms especially sensitive.

[Jaffacakes]

Marie, I have a runny nose a lot of the time and my eyes are gummy - not actually sore though. Might you actually have picked up a cold?

[Mariecay]

Hi everyone x
Glad to hear your home hailey and feeling much better 🙂 watch you don't push yourself too much though!
Good luck for today hazel, I hope the side effects are kind to you.

I was wandering if anyone else was having problems with their eyes and nose? My eyes are constantly sore and my nose is constantly running. I feel like I've got a bad head cold. I've had it since TAC 2 day 7 and it seems to be getting worse rather than better?
Marie x

[Jaffacakes]

Hazel, hooray for shrinking tumours! It's so great to know that the chemo is having an impact. And cheering for the rest of us. As I had my operation first, there is no way of measuring how effective the chemo is being for me, which I find quite hard to be honest.

Lowfatlovatt, great that you are back home. I can't tell you how impressed I am that you have (a) cleaned the house (b) been clothes shopping. Good for you. Me, I potter round the garden, have low key coffees with friends, read a lot, go for walks. Any shopping is online and any cleaning by me is, um, non existent.

[Hazelb27]

Hi everyone

So glad you're feeling better Hayley. Sorry you missed your holiday Rowan. I'm the same. Hubby and I were due to go to Australia to visit our friends at the start if February but that got knocked on the head after diagnosis. We got most of the cost refunded so I'm keeping the money to use for flights next year. That will be our reward for getting through this horrible year.

I've got Fec 2 tomorrow after a weeks delay, it got postponed because I was so ill from the side effects. I feel much better now so not looking forward to the nausea again 😔 I'm hoping it won't be as bad this time because the oncologist has given me enough anti-sickness meds to open my own pharmacy!! The good news is the tumour appears to have shrunk a bit already. The first time it measured 7cm by 7cm and yesterday it measured 5cm by 4cm. The measurement isn't very scientific. They basically grab your boob and use a daft wee plastic gauge. He said yesterday it was difficult to get an accurate measurement because the edges aren't as solid thanks to the chemo. Either way, it gave me a real boost to know the horrible side effects are as a results of chemo that's actually working. It makes fec 2 easier to face.

Hope you all enjoy the bright sunny day.

Hazel x

[Bigpumpkin]

So glad that you are feeling better Lowfatlovatt !! xxx glad to hear that you are ok !!
Im still suffering a little with the dreaded nausea 😞 Rowan thanks for the advice with the Ondansetron, and lots of fibre . Hey not long now and you man will be home to give you a well deserved cuddle xxx Hope everyone is ok, Caz, hope you are feeling better xx its a lovely day, hope everyone gets to enjoy !!

[lowfatlovatt]

Im fine me ducks, I actually came home on fri tea time (was neutrapenic for the 2nd time running) had tea and we all just went bed, meant to post on sat after shopping for new jeans (also came back with 2 new pairs of shoes and 4 tops-oops) but had to get my house back to 'my' clean and had an intense conversation with andy about how he should NEVER EVER EVER dress the boys in red jeans and a purple top EVER again-i got through to him, got rushed in with blue flashing lights sunday morning, severe asthma attack which kept me in on and off a nebuliser till I got come home again today, andy had kept meg and noah off school and freya stayed off college cuz they wanted to be there when I got home, walked through the door to be greeted by the dog and freya and meg chuckling, they had painted the dogs claws bright shocking pink and drawn on eyebrows-the dog is a boy called rocky and freya wants to be a solicitor and is studying law-its like living with legally blonde, told andy hes sleeping on settee tonight cuz hes got a cob on cuz the vale have lost but really I just want to starfish in my own bed
Hope everyones ok and thank you all for thinking of me
Love and hugs
Hayley
Xxx

[Rowan44]

Yay welcome back Hayley we were about to organise a search party  🙂 hope you are doing ok and the family are looking after you 🙂 you get to sleep in your own bed tonight big hugs xxx

[Caz13]

That's brilliant news. Hope you are ok xxx

[Jaffacakes]

Welcome ack, Hayley. Bet all the kids are pleased to have you home.

[alice45]

Hurray! we've all been worried.

[lowfatlovatt]

Hi honeys im hoooommmmmmeeeeee xxx

[Jaffacakes]

Hi Caz, I'm glad your bloods are just about ok. I've had a sore throat on chemo too. I think even a small bug on chemo can make you feel pretty poorly, so I'm glad you've got antibiotics. And I really feel for you on the mood thing. Being a bit poorly just makes one a sitting duck for every incoming emotion. But, as you say, onwards.

[Caz13]

I hope the meds work Bigpumpkin and you can get the sickness under control. Poor you, Rowan it must be hard missing your fella especially when you were meant to be there 😞 He ll be home before you know it and this time next year you'll be able to get booked up to go.
My bloods were quite low but not too bad at 0.4. He suspected they were on the up as I'm now day 12 post EC. He has given me 2 lots of antibiotics and some meds for thrush. He said that if I'd had something brewing anyway when bloods are low it could result in an infection so to monitor temp. Not having a great day mentally ( I cry everytime I walk into oncology!) but think its probably because I don't feel great physically. Onward and upward ladies! Xxx

[Rowan44]

Hi all day 18 of FEC 2 swimming along back to normal but missing my fella like crazy spoke to him online last night briefly waah I was supposed to be there skiing with him ( well trying to ski it would have been my second time I go very slowly lol )
Make sure you drink plenty and boost the fibre with the ondansetron Bigpumpkin it makes you constipated !
Caz I hope they say it's just a sore throat from chemo I get same difflam works a treat 😉
Off to spring clean while I have the energy the letting agents want to do an inspection they do every few months to make sure I haven't trashed the place !!
Rowan xxx

[Bigpumpkin]

Good morning x Caz good luck today, hope you get your piece of mind from your visit. Im sure that all will be good for you x x sometimes I can get a sore throat and they gave me a difflam mouth wash, now I use it as a preventative gargle xx . As for me the cavalry has gone off to collect the Ondansetron, I feel like Im treading water with this sickness but hopefully once I get the meds I will be afloat again. Let us know how you get on Caz. Lowfatlovatt thinking about you xx
Good luck to this week's Chemo team xx