Starting chemo in March 2014

[dh]

Evening all.  Had been doing good but feeling a bit emotional and tired today. All the #no makeupselfies are making me sob. I have a cold too which isn't good is it? I rang my helpline and they said to just watch out for a temperature.

Hair is hanging on although comes out when I run my hands through it so is probably just a matter of time now. I'm back in for my second session on Tues. 

Hope everyone is good. Good luck to all newbies xxx

[Stelwah]

Hi missy12. No, I didn't go for the cold cap - was given the option, but decided against it. My oncologist starts with Docetaxel first and then FEC, so may be having different speed of hair loss and side effects to others as think everyone else here is on FEC first.

Has anyone had a mastectomy with implant? I'm having chemo before surgery, so have this to come. My lump feels really prominent at the moment, so hoping I'll get to feel it shrinking with the chemo soon.

[missy12]

Hi Stewlah glad you are feeling better - I am on day 17 and due to have cycle 2 next thursday, give bloods on Tuesday.  Did you have the cold cap - because you are saying your hair is falling out.  I had the cold cap and my hair is not falling out but my scalp hurts if I touch it - otherwise I am feeling fine.  Im just wondering if you did have cold cap did it now work?

[Stelwah]

Hi ladies, hope you've had a good week.

Lorna - I'm also feeling pretty normal, day 15 for me. Taste coming back more now, though milky tea and milk chocolate still tasting grim. Tiredness snuck up on me today though - had an all day event at work yesterday that normally wouldn't trouble me at all, but utterly pooped last night and today. Hair seriously coming out now, moulting everywhere like a shaggy retriever! Seeing how long I can cope before getting my boyfriend to get his clippers on it.

Mel - glad your ulcers have calmed down. My gums went pretty sore at around day 7 so bought a soft toothbrush. Fine again now though so back using the electric toothbrush. My dentist recommended a mouthwash called Peroxil if chemo causes gums to become sore or inflamed.

Good luck rosie14, pansy50 and ali24 for your first one. As kerolene says, take a mate or partner with you and think of a nice treat to have afterwards. It honestly wasn't as bad as expected, take something trashy to read to try and relax. A work colleague said to imagine the chemo is Pacman going in to gobble up all the nasty cells, which I thought was quite apt.

[Ali24]

Sorry as yo can see new tomthe forum and not sure about posting things. Sorry about that.

I am due to start chemo next Friday. They havent told me yet what combination but I'm assuming FEC.

Really not looking forward to the sickness but hope it's not as bad as I really fear. Had my heart scan today and Going for bloods next Wednesday. Do they offer you anti-sickness meds before chemo.

[Jo_BCC]

Hi Ali24

Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.  Tonight at 8.30pm for an hour our general  Live Chat service runs, the service is weekly, and is hosted by a nurse and facilitated by a moderator, you might like to have a look and join the regulars who I am sure will be there to support you.  I have put you the link below for you to have a look at, you'll be made most welcome. 

http://www.breastcancercare.org.uk/community/chat

Also our helpline team are just a free phone call away if you need to talk to someone in confidence.  0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

Take care,

Jo, Moderator

[Ali24]

I have recently been diagnosed with IDS. Grade 3 - tumour 23 mm and 8mm. I have had mastectomy. I am HER positive. I had no node involvement but positive for LVI. Does all this give me a bad prognosis. The oncologist didn't speak about prognosis. Having a heart scan today and start chemo next Friday.
If anyone has been in the same boat can you please let give some advice. Have two teenagers and trying to be sting in front if them.
They also wouldn't give me a ct scan before chemo as no lymph node spread - is this the norm? I asked the breast care nurse and she said the same. But if I'm LVI positive surely they would have.
Sorry for rambling so terrified.
Alison

[Looby52]

Hi ladies, just had my first dose of FEC which so far is fine. I think this might be known as the calm before the storm! Debs I just wanted to let you know that like you I have curly hair and I also used the cold cap today for the first time. It was absolutely fine, the only downside is that you have to spend longer at the hospital. I'm not sure if it will work but thought I should give it a go. I've got an appointment to look at wigs on Monday just incase.  I've decided to take my two best friends with me so we can have a laugh and I know they will give me an honest opinion.

[Mel51]

Hi I'm now on day 7 post FEC1 and today has been the toughest day. I noticed an ulcer last night and this morning woken up with a sore throat - well, I say sore, but it's more like I've swallowed something and it's stuck - has anyone else had this? I called my chemo nurse and she referred me to my GP who had a look and said it's all fine. I've swilled with some mouthwash and the ulcers have gone today, I've been tired today, but there's going to be highs and lows and today is defo a duvet day!! The chemo is do-able for all the newbies, but it's just a matter of seeing how your body copes with it and making sure you report it all back to your onc before the next round. Good luck

[kerelene]

Hi everyone I am due to have 3rd cycle of FEC next week. my main side effect has been the restless mind which I have posted about separately. I also had a huge appetite for cream cakes roast chicken etc when my appetite came back. Like someone else here who mentioned craving junk food. I was previously very healthy, juicing every day as haven nutritionist recommended, but then I forced a juice down while still nauseous and it came back up, which has really put me off!
Well done to the lady with a 5 year old and young baby, what a tough job you've got. are you getting enough support? I have 3 kids aged 8,5,3, fortunately my niece is staying and helping out, it must be a huge challenge going through chemo with a young baby.
Good luck to those starting this week, take a friend along if you can, i took my friend for a natter during chemo and we treated ourselves to nice lunch from pret a manger. my nausea kicks in about 3 hours after chemo finishes. its nice to have a friend with you.

Kerelene

[Elsieoc]

I'm now on day 13 and feeling so much better. My mouth is very dry and food doesn't seem to taste of much at the moment but, other than that and a bit of tiredness, I am feeling almost normal again.

It's hard to believe that my first chemo was nearly 2 weeks ago. Like others have said I think the key is to remember that the chemo is your friend not your enemy and just make the most of the times when you are feeling well.

Lorna x

[Pansy50]

 I'm starting Tuesday next week. Was meant to start yesterday but woke up with a really bad cold. GP gave me antibiotics as she knows it's better to get started. So a bit of a reprieve but not for long. Pansy50

[rosie14]

Hi I am due to start next week!

[Debs-]

By the way...im having fec every 3weeks,so although told my chemo is 6months its actually only 3months long...unless im having more than 6 !!! Think i need to ask about that thinking about it!!! Confused myself now lol.. 

[Debs-]

I too have long naturally curly hair but will give the cold cap a go although quite prepared that it wont work.I'm 40yrs old Girls...Start 1st chemo this friday 9am in morn x

[Looby52]

Thankyou for your replies ladies and Donnaandfamily I will be thinking of you on Thursday too.  I know this will sound a bit strange but it is slightly comforting to know that someone is at the same stage of chemo as me. I am going to try the cold cap as this is available at my hospital, although I am doubtful if this will be successful as I have been told it is the E in FEC that makes your hair full out and I am having 6 sessions, so we will see. Fingers crossed x

[Kirstykat]

Hi dh sorry to hear your bone scan showed something in your pelvis, try not to worry (not easy I know) we can get so paranoid can't we. When will you know more? Remember this forum is here to offer support so do let us know.
My aches have been in my foot, down the inside of my right leg and a bit of stomach ache. My rash is now really bad and itchy! Just taken anti-histamine.
I got my wig after I walked out of my first scheduled chemo. It is still in the box, it is nothing like my real hair as they dint do wavy curly wigs anything like my hair. I tried some with a curl but they felt really fake. In the end I went for a straight shoulder length one, in a copper reddish colour. I need to book an appointment with the wig hairdresser though as fringe too long. I have been looking at turbans / hats on a site called surburban turban, I may be more comfortable in one of those.
Good night all, best wishes xx

[Stelwah]

As others have said, fear of first chemo worse than actually having it - good luck new ladies. I'd been nervous about having a line put in, but they seem to be fine just doing it in a vein and taking cannula out each time, which is brilliant. It's been 13 days since my first one (Docetaxel) and the hair has now started to go. Not noticeable yet, just an obvious increase in hair in bath and on clothes, booooo. I got my wig just after my first chemo so had it ready, glad I did. Shame it's not the leg hair that goes first!

[dh]

Hi debs, I got my wig a week after I started.
kirstykat I have aches all day today all kind of in my left hip and all down the left leg. They said something was showing on my pelvis from my bone scan, hoping it's nothing to do with that 😞
Newbies, don't be afraid, the actual process of chemo is fine, for me the sickness was the worst but I suffered with really bad morning sickness so they said I would probably suffer now, it seems once that had passed that most of us haven't been too bad.
Gosh, we are all pretty young aren't we. Xxxx

[Kirstykat]

Hello everyone. It is day 12 after chemo for me. My rash it getting worse and I have strange aches and pains; my scalp is itchy and mouth feeling a bit strange. I spoke to a nurse who said this is nothing to worry about, that my skin will be more sensitive and aches are to be expected. I went to a meeting at work and kept seing my stray hairs every where, on the paper, my jumper, the floor. It's not nice waiting to see what happens with the hair. Obviously concerned as these are the low immune days, sorry to moan. I must say that it has really not been that bad, not in proportion to how anxious and scared we get before hand. Donna I drink almond milk and also coconut milk (not the one for cooking) one called koko, oat, hazel nut and hemp milks also sold in the super market. Why have they advices against soya? Best wishes x oh I'm 41.

[Debs-]

Hey Ladies,Did you all have your wigs before chemo started?

[Mel51]

Good luck ladies for your first sessions this week.
I think that the anxiety on the run up to it is worse than the reality of it. If you read the threads they all say the same - it's all about figuring out how your body is going to cope with the chemo. Keep a good diary of how you feel and how the drugs impact on you and remember to feed that back to the onc. I used the Paxman Cold Cap and found it bearable - I took someone's advice and took a couple or paracetamol before it went on and this seemed to help. Take lots of layers and a hoodie/hat for afterwards as you head home. I'll persist with it as long as I can or have hair as it may be linked with a quicker re-growth, but who knows!!

Best of luck for Thursday and remember to listen to your bodies and rest (even if the steroids tell you otherwise!).

I am 32 years old by the way!

[missy12]

Hi dh I am 41 years old

[Roseberry]

I think we have all been scared before we started but it really wasn't that scary. The scariest thing is not knowing how your body is going to react to the chemo afterwards but for most of us the side effects haven't really been that bad and most of us have felt good after the week after. If you read back through the threads those of us that have started chemo have commented on how it has gone and how it made us feel.
I used the cold cap and found it really bearable. I am sure the nurses will help you feel at ease; I found it really helped chatting to them throughout the session.
Good luck on Thursday Looby52 and welcome to the group.

[Donnaandfamily]

Hi Looby........I am starting on Thursday too....... had heart scan today. So nervous ......... I hope all goes well for both of us. I hope to have a good nights sleep tonight and tomorrow........People on here say that once we have started the fear eases......

[Looby52]

Hi everyone I'm starting FEC treatment on Thursday and feeling really scared. Can anyone let me know what to ex

pect. I'm off to the hospital today for blood tests before I start.

[Donnaandfamily]

Ahhaaa.....found the following info ...may interest others....regarding almond milk

 it is free of cholesterol and saturated fat, rich in vitamins and minerals and omega fatty acids. Level of manganese, selenium, and vitamin E is quite high in almond milk. Almond milk can supply 30% of your daily calcium requirement.
It promotes growth and repair functions of the body.
Magnesium helps break down the consumed food into energy.
Vitamin E acts as an antioxidant and destroys the free radicals which cause damage to cell membranes.
Selenium improves the function of reproductive and immune systems. It promotes thyroid function.
No cholesterol,  risk of heart diseases is significantly reduced.
Potassium helps maintain normal blood pressure.

[Donnaandfamily]

Morning......can anyone recommend a milk alternative......I have been told to avoid dairy and soya milk....is Almond milk ok to drink? Trying to plan a healthy diet..........tx Donna

[Roseberry]

Some of us have had stomach cramps too so I think it is probably chemo side effect. I'm 45, although I rarely act it, lol!!

[Eitaki]

No real hair loss here yet either. I plan to shave it as soon as it starts coming out. Not had many troublesome side effects from chemo (yet?). The nausea has been the worst of it. My mouth feels dry/rough. Today ive been getting some nasty stomach cramps too, not sure if that can be blamed on chemo though. In answer to the question about ages..im 32. 

[Stelwah]

Hi dh. I'm not looking forward to hair loss starting either. I didn't use cold cap though - sounded unpleasant and extended time spent in hospital - so guessing it's a matter of days now. I keep looking at the plug hole/pillow with trepidation, but wig and hat ready to go.
I'm 37. Already had a different cancer when I was 24 that involved surgery and radiotherapy, but chemo all new to me.

[dh]

Just had a shower and lost more hair than I would have liked. Not a lot but wondering if it is the start 😞
I have thick hair so hoping it won't be noticeable for a while and I did use cold cap. I have a wig already in preparation. My usually bald husband looks hysterical in it lol!
My FEC symptoms so far have been, vomiting for first 2 days, the next two days u was just weak and felt pathetic. Wanted to stay in bed but couldn't get comfy, my arms were really restless which was weird. Then I just felt really tired, light headed, fuzzy head, and generally drugged. By day 6 I had to be completely back to normal and back on school runs etc. I have a 5 yr old and 16 week old so that week was hard. I've had a furry feeling on the roof of my mouth, dry mouth at night and a few aches and pains but I dud think it would be a lot worse. Hoping they can do something more for the sickness next time. I'm back next tues so going to make the most of this week. Don't like the waiting game of if and when the hair is going to go. I'm only 36, how old is everyone else if you don't mind me asking 😜

[Stelwah]

Good to hear everyone is doing better. Been feeling great over past few days, enjoying the sun and working as normal. Waiting for hair loss to start - nothing yet though so hoping it'll hang on in there as long as possible.

[Kirstykat]

Hi Glad to hear you are feeling well Roseberry and Mel51. How about others?
I am doing well also. I had a very nice country walk on Sunday and the sun was out, beautiful. Not feeling so low thanks. I had a massive appetite after chemo just wanted junk food though, had pizza and Burger King in one day! Back to eating healthily now ...I got a rash on my neck a couple of days ago but appart from that feeling well. Quite a few hairs are coming out but not that anyone else would notice. I go back to work on Sunday. I do shift work so trying to get organised and do the garden etc this week. Best wishes xx

[Mel51]

On Day 4 of FEC1 and feeling surprisingly well. I had a little nausea on Saturaday morning, but managed to up my fluids and eat a little pineapple and a banana and the nausea soon passed. Quite tired mid-morning, so I have a little nap, and again in the afternoon if I need it. I'm trying to build all of my meals/snacks around my 5 a day and taking in plenty of fluids throughout the day. Don't fancy anything fizzy, but do have hunger, although not really sure what I'm hungry for!! All in all, a good start, but I'm trying to take each day as it comes as you're never sure what is around the corner!!
Need to make a decision now about the PICC line and also try and stave off the boredom - but as my friends said if I'd known these would be my only two issues at the start, I would've been happy and I have to agree.

Keep talking ladies and remember there's always someone on here who is feeling the same.

[Roseberry]

Morning all and welcome to all the newbies. I am now on day 12 following first FEC and have felt good since day day 8. The only side effect at the moment is dry, tingly mouth and lips and a burning sensation in my mouth/throat especially when I drink fizzy drinks so no beer for me yet! I used cold cap and still have all of hair, yay!
Good luck to those of you having your first chemo this week, it really isn't bad at all and I found the cold cap to be really bearable; I did take paracetamol before I went to the hospital (maybe this helped?!) and at the advice of my breast cancer nurse, I kept the hand the cannula was being put in warm by wearing a glove beforehand to make it easier for the nurse to find a vein. With regard to antisickness tablets, I took ondansetron for 5 days after chemo ( I did still feel nauseous but wasn't sick) and I also took my back up metoclopramide tablets for a few days after the ondansetron ended.
Bella11 and Kirstykat I hope you are feeling much better in yourselves. Although I am and have been really positive from the start, I am having moments of tearfulness but don't really know why. That said, I do know it's an emotional roller coaster and it is completely normal for us to feel low at times. For me, it all still feels like a dream and I am still waiting for it all to really hit me but maybe it won't!
Have a good day everyone and thank you for your posts, it is really reassuring to read that we are experiencing similar symptoms and emotions.

[missy12]

Hi everyone day 12 today of my first fec, like elsieoc I had pain in my lower back and pelvic area day after injection finished, really bad did not want to walk! Now much better as injections finished wednesday. Otherwise im fine no side effects, mouth ulcers or anything. Hair is ok too fingers crossed cold cap worked. Going to make the most of this week. Please ladies stay strong xx

[dh]

How's everyone doing? Day 13 for me and feeling really well, hope I haven't just jinxed it! Haven't lost any hair.....yet!! Xxx

[poemsgalore]

Hi Elsieoc,

That pain is awful isn't it. After chemo number 4 (first tax) I had Neutropenic Sepsis. Temp 38.7c and zero neutrophils. I was in hospital and crying with pain. Neuts went up from zero to 2.5, then from 2.5 to 11!! The nurses were bringing me extra blankets as I couldn't stop shivering, extra pillows, paracetamol and Ibuprofen. Thankfully my onco put me back on FEC for my final two and I was ok again.

poemsgalore xx

[Elsieoc]

Just as I started to feel better after starting my chemo last week. then last night I began getting severe pain in my lower back and thighs.

I had trouble sleeping and ended up phoning the hospital. They said it was perfectly normal due to the daily injections I have been taking and just to take pain killers. I wish I had known this beforehand because it can be pretty scary at 3am when you are tired and in pain and on your own in the house.

Much better today though. Pain killers are doing their job and hopefull should wear off soon as I have no more injections left to take.

Lorna x

[Wildpurl]

I've now got my pre-chemo and 1st chemo appointment and I will be starting on 4th April, but that's so close to March I hope you won't mind if I stay with this thread now I've got to know you!

I've also got an appointment next week to look at wigs and find a suitable one so I can order one right away if the cold cap doesn't allow me to keep enough of my hair. My BCN suggested this, and I think it is a good idea as I will already have a plan B if needed.

[Kirstykat]

Hello Donnaand family sorry to hear that your family member is feeling so unwell. Side effects are different for every one, whether you get then and how long they last. I was given a number of medications to deal with some side effects after my first chemo last week. This included a mouth wash incase my mouth got sores / ulcers and I was advised to brush my teeth after every time I ate. I got pills for constipation and pill for diarrhoea. Also, to call the chemo if there was any side effects I was worried about to talk these through. My mouth gets very dry at night and I have to sip water and swill it around my mouth all night long. Up till now it has not got sore nor have I experienced any changes with taste. Also, I have been advised to keep a diary of changes and side effects so I can discuss these next time I meet with the oncologist. Best wishes x

[Kirstykat]

Hello Funky

Yes, the fear of chemo definitely eased for me now I have had the first dose. I listened to relaxation CDs in preparation and was unable to go through my first booked chemo because I was expecting the cold cap and when I got there they did not do it at the community hospital I was in, that ruined my 'relaxed' mental state and I had to re-book at a different hospital. I was recommended a relaxation CD where you visualise getting the treatment you need and it doing the work it needs to do. It comes in a book called 'Lifting your Spirits' Seven tools for coping with illness; a practical guide with 2 CDs. I got it used on amazon. Also, www.thehaven.org.uk has relaxation downloads, I imagine there are a lot on the net.
Best wishes x

[Kirstykat]

Hello Funky

Yes, the fear of chemo definitely eased for me now I have had the first dose. I listened to relaxation tapes in preparation and was unable to go through my first booked chemo because I was expecting the cold cap and when I got there they did not do it at the community hospital I was in, that ruined my 'relaxed' mental state and I had to re-book at a different hospital. I was recommended a relaxation CD where you visualise getting the treatment you need and it doing the work it needs to do. It comes in a book called 'Lifting your Spirits' Seven tools for coping with illness; a practical guide with 2 CDs. I got it used on amazon. Also, www.thehaven.org.uk has relaxation downloads, I imagine there are a lot on the net.
Best wishes x

[Jo_BCC]

Hi Donnaandfamily

Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site, who hopefully will be along soon to offer you that support.

Our helpline team are just a free phone call away if you need to talk to someone in confidence, they're here to offer you both practical and emotional support.  0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.

Take care

Jo, Moderator

[Donnaandfamily]

Hi everyone........ I am waiting on my heart scan on Tuesday prior to starting my first FEC-T chemo on Thursday. I feel so lost right now and scared beyond belief. I took my first citalopram for depression yesterday but it caused my blood pressure to drop and my pulse to 50.....leaving me feeling strange and unable to sleep. I will ask GP to change because I did not want to risk blood pressure and pulse dropping again before my heart scan. I hope these feelings of being so scared and panic ease once I start the chemo? Has anyone else experienced this?

[Funky]

For Mother-In-Law (as no internet)

Started treatment on Monday with her first lot of FEC-T chemotherapy, she is having 4 cycles 21 days apart for 1.5 hours each.

Had anti sickenss tablets for first 2 days after, and then having injections for next 5 days to help with white blood cells.

It seems to have made her more tired than she expected and changed her taste for different things, her throat and top of her mouth have become very sore, and her hands are tingling alot.

She is rubbish at asking questions and the time, so asks after, I am guessing all these things are normal, we have been using the MacMillan site alot for info, but great to see others stories too.

How long will these last?

[Mel51]

Yesterday was a looooong day. The chemo itself and the process was not anywhere near as bad as anticipated. However, apparently I have tricky veins (1st time I've even been told that!) so think I'm going to have a PICC line fitted before next round. As far as SE I didn't each much for dinner due to the nausea, but the anti-emetics kicked in over night so I managed some sleep, but the steroids limited that!! I'm tired and a. It achy this morning, but just had a little breakfast and my steroids. One of the greatest pieces of advice I read on here is to not wait until you start to feel sick and drink plenty of fluids before, during and after the chemo and I think this is working, but I'm sure time will change that!!
Do however, have a bit of a headache he - think from trying to sleep when couldn't and a runny nose on occasion!

[susan4]

Hi, hope everyone had some sleep. I am due to start chemo Tuesday for the third try had 2attempts already!having 6 Dec reads then tamoxifen. Cancer grade 3 administered same grade? My complication is I have ms as well not really heard of anyone in same situation.really concerned about nausea and also about getting infections can't hide away for a few months! Love to hear from you wishing u all well.

[Eitaki]

Morning girls, how are we all feeling?

Mel, how did your first chemo go? 

Im starting to feel a little low, I thinks its because im having a rough time with the nausea though. Went to the hospital yesterday and they gave me an injection which helped but it soon wore off. They did give me different sickness tablets to take (cyclizine) so fingers crossed these will work.