Starting chemo in March 2014

[ProjectKylie]

Hi Mel51, I've been a loon too but days 1-5. I spoke to onc yesterday the dexamethasone was blamed for the anxiety, tearfulness, insomnia, paranoia and restlessness. I took 8mg days 1,2&3 for FEC100 1&2 but will reduce for FEC3. I asked if FEC doses were incresed for no 2 and they were. She admitted that if she started high patients may not return. I doubt that as we all know how vital treatment is. Onc also said dexamethasone is used prior to and during Taxotere, great, there was mention of a plan B.
Appetite - I have eaten for fibre than usual but otherwise still 4+ stone overweight me, I hoped to lose if only for being booze free. Pete (hubster) has been a chef in the past but ovoids the kitchen now so I eat whatever's offered when not cooking myself. Typical me not gone off anything foodie.

Hair - I have a bald left side strangely and a hairdresser coming tommorow, will buzz then probably. How is your scalp ? Eyes and nose stream now and lip balm is a must.

Dreading FEC3 but focusing on changing the dread to "Bring it on".

Best wishes and happy Easter all. Lisa x

( Facebook group up and running private message me for details how to join )

[Mel51]

Roseberry - I have a ridiculous appetite. I pick for the first couple of,days, then I crave junk food, then I crave as much of,anything I can get my hands on. It tends to be healthy stuff, but I have demolished a number of curries etc too. I can't blame the steroids as it's well after they're out of my system!

[Mel51]

Hi all,

Been a bit quiet on here for the past week as I went away to visit some friends for a few days which is exactly what I needed and am back to feeling positive again. Does anyone turn into a loon about 6/7 days post-chemo?? Both times I start crying whenever my OH walks in from work!! I suppose it's the drugs they pour into our systems - it's bound to impact on our moods.
On a Different note- my underarm hair seems to be growing back!?! Also hair 'elsewhere' is growing back - anyone else had this? This was actually one of the 'perks' of chemo!!
Off to see onc on Tuesday and will see if need to change to Taxotere as tumour not changed in size.
Until then, I hope all of you have a peaceful and restful Easter and eat as many eggs as you possibly can😃

[Roseberry]

Hi all, hope you are all doing well and good luck to everyone having their 3rd chemo this week. I have mine tomorrow, well later today! Shaved my hair two weeks ago and felt so much better afterwards as hair loss seemed to be the focal point for a while. So, tomorrow will be my first session without the cold cap although my hair in parts has grown a little and I am now looking a little bit like Tintin, lol! With regard to headgear, I am most comfortable in head buffs, they really are so easy and are really soft. I got a wig two weeks but I don't really think I have the confidence to wear it although my friends have had a giggle trying it on!
Is anyone else piling on the pounds or is it just me? I feel rough for a week after chemotherapy then my appetite increases and I am now looking like the one who ate all the pies, lol!
Stay positive and take care.

[Stelwah]

Hi ladies. How are you getting on this week? Saw my doc today, and confirmed I'm having 8 rounds of chemo - had been booked in for 6, but 8 it is. Boooo but if that's what it takes, then there you go. Going to put off having my PICC line now until just before round 5 when I switch to FEC.

[Debs-]

Hi Donna ,thanks for the tip...anything that helps.Start my jabs tomorrow that put me in agony. Day 4 of fec2 today and not as sick as last time but still not great. Hair nearly gone now .didnt bother with cap 2nd time. Excuse memory and writing,def have chemo brain lol x

[msmcann]

Hi. Re your picc line. I hated the white mesh they gave me so ended up buying thick winter colourful tights and cutting the top and bottom off sewed up edges. Worked a treat as you can find coloured tights to match your outfit. Also wore my Heather's Hair. www.heathershair.co.uk

[Donnaandfamily]

Hi again Deb....

regarding raising white blood cells (WBC).....my daughter bought me from Tesco online LifeMel Honey...made in Isreal...you can read up on it.......it claims it boosts WBC and is research backed..........it is 2 teaspoons at each morning and at night ...is a bit expensive xx

[Donnaandfamily]

Hi Debs.....hope your chemo went ahead today xxx

[Mel51]

Thanks, Woolfie. It's very much appreciated. It's nice to hear from someone who is a year on from us and give us some perspective as sometimes I think we feel that this is going to go on forever!!

[Woolfie]

Dear all haven't been on the site for a while signs of getting better. I started chemo last March after a total mastectomy and recon plus node clearance at the end of January 2013, see spring into chemo in March thread, and just wanted to give all those who started this March some encouragement. It can be done, you will win through keep supporting each other. This site is such a support. Some of us from the march 2013 thread met up for lunch recently. Try to hold on through the dark moments, let those who want to help do so it will help them to feel better. There will be light at the end of that very long tunnel. Don't give up good luck on your journey..

[Mel51]

Thanks ladies,

I had a it of a cry yesterday and felt better. Reading your posts helps as you all understand what it's like.

Golly - I'm on FEC at the minute and this may change to T as they're not seeing much change in my tumour. I'm going to stick with it for a little while longer and make sure I'm 100% before I take the plunge!! I'll see how the Easter goes and then decide I think.
I've just had to face a few self-esteem things this week and have a glam party on Saturday to go to and don't feel like I can face it. I have no issues with going out but when you're all dressed up and nobody knows, it's tricky to feel comfy. I just don't feel like me without product and styling and a bit of body to it! Ridiculous, I know!!
The good thing is that I am not stressing as much today and feel more accepting of it ( if that's the right word).
Let's hope we all have a good weekend and thanks for your comments.xx

[joan47]

Mel My hospital told me about a plastic arm sleeve (cost £14 from the shop in the oncology centre) which is great for showering. It also means I can have a bath (bliss) (obviously keeping arm out of water). I also have a PIC line and agree it is a bit difficult with some clothes. Having to wear the same things with looser fitting sleeves. 

[Butterfly318]

Evening Mel. 

Not sure what Chemo regime you are on.  Sadly i lost all my hair despite the staff at the unit doing everythng they could (they really were just great) and me using the Paxman.  I had a high dose and it came out about 50% after the first FEC and the rest was everywhere so i had it shaved just after the second.

Not sure if this is your regime or if you are aware that generally it is the FEC that causes the hair loss and usually it starts to get a downy covering when you go onto Taxol.  Just a thought as it might be worth giving the Paxman another go if you've hung on to most of your hair so far.

Good Luck with the rest of your treatment.   Take Care   Gilly x

[dh]

Oh my goodness, I feel for you all with your hair issues. I was the same, it was everywhere, my daughter was picking it out of her food, it was in my babies nappy, just everywhere. I used cold cap once and I think all it did was delay the process a bit so didn't bother on my second fec and it was great getting out of the hospital 2 hours quicker.
I had super thick hair but it was coming out in handfuls, I kept putting off shaving it while I still had quite a bit left but it looked awful and there was nothing you could do with it.
2 days ago my husband gave me a grade 1 and I feel so much better about myself 🙂
I don't look as odd as I thought I would, my wig fits/feels better and I can cuddle my babies without covering them in hair. I did sob at the time but now I wish I'd done it sooner xxx

[Debs-]

Hey Mel,ive not got to your stage yet although my hair is starting to fall out.Ive had paxman once 2nd time 2mro. My problem is im naturally curly and as my hair has changed so much its matting and turning into dread locks every minute,even after ive done it. Just had it cut to shoulder length but still it hasnt helped. I feel to unwell to keep on top of it but at same time im trying to mantain some of it for when chemo finishes!!! Im just taking one day at a time...just listen to your self and not others.If its time to shave it off deep down you will know,but if you need to hang on to it,do it whatever way possible!! Wearing hats or bandanas over hair etc. I dont know how far im prepared to go myself. sometimes i wonder why im hanging onto my hair when it looks nothing like it used to on chemo anyway!!! I dont even want to wear the paxman again tomorrow as it caused a migraine .soz im not much help.But what i do know is im using the cc and its not stopped me getting a wig from hospital !!!! Nhs give you £100 towards wig i thought for everyone !

[Mel51]

Morning ladies. Having a bit of a tough time at the minute and guess what?, it's about HAIR!! I'm kind of stuck in limbo at the minute, not knowing what to do for the best. I've used the cold cap for the first two sessions, but am losing my hair now. The crown and parting in particular. My hair is so fine that it just kind of sits there lifeless and I can't stand the 40 minutes worth of tidying up after I do wash it. I hate the soreness of the scalp and the fact that I feel I need to constantly tidy up after myself. I went out yesterday and left hair everywhere. My "fringe" wafted around in the wind (which nobody tells you is painful!) to only be left with a handful of hairs tickling at my neck which had fallen out. The problem I have is that if I put a hat on and go out it looks like I've got hair. All of my friends and family tell me not to shave it yet as it's not noticeable yet and people in the hospital keep telling me that if I stick with the Paxman I'll see results quicker at the other end. I'm so confused. Move also picked out a wig which is very similar to my original hair, but the hospital won't give me my prescription for it as I'm trying the CC!! I know this isn't shalt you all need today and you're all going through your own struggles, but I'm fed up of now knowing what to do and people telling me "I don't care about your hair. It'll grow back" or giving me advice without fully understanding what it feels like to unblock your plug hole four times during a shower!!

Sorry ladies - bad day at the office. Rant over.

[Donnaandfamily]

Hi Debs

I had a cold when I started my first course....so hopefully they will still go ahead.......I did have high temp day after finished injections...after all tests.....they put it down to the cold......had antibiotics and sent home ...so fingers crossed x

[Debs-]

I'm now getting a cold !!!! Will they go ahead with my chemo friday? IIve had such a bad 3weeks since fec1.Saw my onclogist yesterday..i have to start iron and have the injections for my white count on day 4,5,6, next round.Usually its for 7days but because they put me in agony he is just giving me 3days for now.Dreading friday xx

[Stelwah]

I don't wear a wig cap at all, just put it straight onto my head. Have a teeny bit of hair left that I brush back to help stop it irritating my scalp. Doing day of wig, day of bandana at the mo.

[ProjectKylie]

I am not friends with my wig either, thought I'd make it bigger to sit better but is at it's largest, I have a covering of hair although getting patchier by the hour perhaps when the hair has gone the wig will sit better. I have to wear for visit to Mum only as she is not aware of my treatment. I prefer bandana type headwear anyway, luckily. 🙂

[Donnaandfamily]

HELLOOOOO ALL

hope everyone is well.....................can anyone help.....my wig cap keeps riding up under my wig and I end up with a nipple on the top of my head....how do I stop it riding up?????

[Donnaandfamily]

Hi Mel

I use my grandaughters oilatum junior cream for dry skin and ezcema ....and I bath in oilatum which coats your skin lightly......its ideal for sensitive skin....I did put onmy face which initially was fine...then had sensation......may have been hot flush but didnt put on face again .......... The summer is coming and you can enjoy the weather......

We have just bought off ebay an old campervan.......we went out at the weekend and ate our food out...so didn't have to worry about what I was eating and how it was made.......its great when we are out and need the loo or feel tired......No holiday this year so we put it into the van .......xx

[Mel51]

Hi ladies,
I also still have leg hair, but armpit hair has gone completely. Trying to only wash hair once this week and it's a struggle already. I'm having dry skin problems on my hands, feet and legs despite moisturising regularly - any ideas?
Having a few dark days at the minute and keep thinking that I'm only 32, but have decided that I need to think of some positives every day. Going to visit some lovely friends this weekend which will be lovely and will lift the blues. I find the end of this first week post chemo the hardest, but remember that I'll be on the up after this (fingers crossed).
I have a PICC line fitted and it was so much easier on chemo day, but it's a pain when showering, so tend to have a bath unless washing hair now which makes it easier. Only problem now is trying to get clothes over the top of it - does anyone else have this problem?
Here's hoping that we all have a good day today xxx

[missy12]

Hi ladies, have any of you noticed if your tongue has changed colour. my children said mine is purple and I checked in.the mirror and it was! It was sore but I.did.not bother looking this morning. I have no picc line, my.vein is corded after fec2 so dont know what will happen next.tues when.i go to give blood, can only.use right.arm for everything. I also got flushes on one side of my face.when.had both cycled but this tends to go after a week. Good night ladies xx

[Stelwah]

Donnaandfamily - your yeti legs comment made me laugh! Mine are slowly getting smoother (every cloud...), armpit hair all gone 🙂 Alas nose hair seems to have gone too, so nose constantly running 😞

[Stelwah]

Missy12 - have you got a PICC line in, or are you having FEC into the vein? My chemo nurses are insisting on me having a PICC when I start FEC because of potential problems with cording, won't do it into the vein. My scalp also has almost eczema-like red patches at the back and nape of my neck. Nurse has suggested E45 cream, not doing much so far. Face also really red and spotty around my nose, not looking my best!

[rosie112]

Hi all, I am on day 6 of FEC 2. It has hit me harder this time and I am absolutely whacked. Cannot believe how it drains you so much. Hair all gone and one toenail hanging off. Never thought life would be like this. Love to all Suzanne xxxx

[Donnaandfamily]

Hi Mel

didn't take the plunge and cut it off.....still have a covering and fringe.....wearing turban in doors with fringe showing ........but wig when out........like you say while its here Im hanging on.in......still have legs like a yeti.....xx

[Mel51]

Donnaandfamily - I agree that the flushes and spots are a real pain and something I didn't think about beforehand! My hair is coming out in handfuls now and I'm in a bit of a dither as to what to do. Think I'll probably see how this next week goes and make a decision. It's just not clear cut as to if it'll ease off or keep going and I don't want to jump in too soon. It's still looking like I have hair, but every time I move or comb (combing is only once a day) lots drops out. It's the dread and fear of when I shower and wash my hair the amount that drops out. It's the physical appearance of the handfuls in your hands which hits the hardest and is the only reason I might go and get it chopped.

Ah well, sorry for the droning on - I'm sure the decision will hit me soon!

[Donnaandfamily]

Hi All

Hope you are all well....as can be .....

Most of my hair fallen out now...so wig on all the time now ....

My next chemo is on Thursday......blood permitting......... not looking forward to it but onwards and upwards...........

I still keep having one side of my face hot flush...weird.....and I have a zit the size of a plum on my chin........hubbie didnt know which head to kiss first.....joy ohh joy......x

[dh]

Day 6 Fec2 and Weekend in bed for me 😞
Not so much sick, just shattered and feeling weak and rubbish.

[Mel51]

Hi all.
On day 3 FEC 2 and lost lots of hair this morning. It was a shock at just how much I lost but onwards and upwards. Need to focus on the end game of getting fighting fit again (which is generally how I feel most of the time!).
Chemo hit me straight away this time. As soon as it went in I started with the nausea and it was terrible all of Friday night. It subsided Satirday, but back a touch today. I'll speak to my onc when I go back next time. Not sure if it's down to it being administered faster due to PICC line, but last time I didn't get the 'hit' until day 2 and then it was minimal. Either that or this is down to the cumulative nature of chemo. We'll see.
Anyway, 2 down and 4 to go - a third of the way!!!

[missy12]

Hi everyone, its day 10 for me of the second fec.  I am now feeling a little normal and less tired/weak.  Debs it must be hard, I like you ended up in hospital after the first cycle of FEC and thought I could not cope with this.  The second cycle you seem to know what is going to happen (appreciate that you had a chest infection to deal with alongside all the other side effects that chemo gives you) and are more mentally prepared. 

Hope everyone else is doing well, I did have my head shaved last week before I had second cycle.  Mum saw me today and I think I scared her because my head was not covered:)

Has anyone else got a rash/spots on the scalp since losing the hair - I have and was wondering if you have any tips?

Also after second fec my arm has been so painful - corded and won't straighten out - any tips to ease this because I am not looking forward to cycle 3 (same vein will be used again). xx

[ProjectKylie]

Oh Debs, I'm feeling for you, I'm day 5 FEC2 & finding this one easier so far, hopefully you find the second easier too x

[Debs-]

Its me again,im day 16 after my first fec..had cold cap but hair starting to come out a bit today. Have not been on here as ended up back in hospital for a week !!! chest pains and breathless,had infection and count was so low amongst other things i have not the energy to write right now. Been awful for me since day one of fec.The injections i had to have to higher my white count also put me in agony up my back,head and chest and morphine did not work !!Been quite poorly really but met some great cancer patients in hospital. am weak and tired right now but out of pain(for now) Start my next fec 11th april if im well enough but they are talking of lowering my dose.all the best be back when possible.x

[Stelwah]

Try and book on the 'look good feel better' workshops as quickly as you can. Popped into the hospital cancer info centre to book a fortnight ago, and next one I can get on is the middle of August!! They are v popular - my aunt went on before and said it was great. Went on the HeadStrong course today, so have 2 nice scarves and know what to do with them!

[Donnaandfamily]

Ohhhhh thank you buttercup

it appears my hospital hold it once a month ....I wil ask when next there ....never thought to look on google,,,,thanks x

[Buttercup01]

I just googled it and the website will tell you where it is being run nearest to you. It is being run at the hospital where I'm having treatment but the next available date was the 20th May so it seems a popular thing!

[Donnaandfamily]

Hellooo all, hope you are all well

Can anyone advise how or where you getthe "look good feel better course"?

Keep hearing about it but dont know how to het it or where?

Thanks x Donna

[Porkie]

Morning All. My hair starting coming out in handfuls after my first dose so had it shaved off - just found it awful waking up with hair everywhere. Had second dose now and still have eyebrows/ lashes - hoping they will stay round for a little longer. But I have got used to wearing my wig about now - bought two one like my own hair and a shorter cheaper one that I thought I could wear under a hat to take my dog for a walk - found this one more comfy so now my preferred hairpeice! Buttercup I found my skin very dry and bought a skin oil to rub in by Jennifer Young  - which seems to have really helped. Now 10th day since 2nd dose and feeling much better, ended up having to have anti biotics for chest infection but 2 down 4 to go as Buttercup says a third of ther way there. Hope evrybody has a lovely weekend. Jackie x

[Buttercup01]

Morning All, 

Haven't posted since last Saturday (following 2nd FEC on the Friday), the sledgehammer hit Sunday morning!

Felt totally wiped out all week but started to feel myself again yesterday So that's 2 down 4 to go, a 3rd of the way through! 

The worst side effect for me this time around was the that my skin felt so sore and bruised, like I'd been beaten up! That lasted Sunday & Monday - has anyone else felt this? I'm not sure whether its because I chose not to take the steroids after the Chemo?

I've been keeping up to date with all your posts and notice quite a few (if not all) of us are losing, lost or shaved our hair! So much for the cold cap eh?!?! I shaved my head just over a week ago now but still have my eyebrows and lashes at the mo. Wondering whether round 2 of chemo will get them this time?? I'm armed and ready with the brow pencil and false lashes if it does happen! Lol. 

Best wishes to those due round 2 shortly xx

[msmcann]

I think it's the worst thing losing your hair. You know it's going to fall out but the speed it happens it's quiet amazing. I ended up getting it all shaved off as it was looking such a mess. I got a NHS wig but also had a Heather's Hair weave www.heathershair.co.uk and ended up wearing that all the time rather than my wig. Hope the chemo treats you all kindly and your hair will grow back...the feeling of wind in my hair now is something so special I would never of even noticed before. All the best to you all. It's a long journey.  

[Mel51]

I can empathise Donnaandfamily. I've seriously started shedding today. I've had a few stray hairs coming out until today, but wow so much came out today. I am using the cc and will continue when I go in tomorrow for my chemo. It is upsetting, but I'm trying to focus on the bigger picture. I have a wig on standby and lots of scarves, but not sure which root I'll go down. Not sure if I'll ever decide just to shave it or if I will persevere until thee d. I guess I'll know what to do when the time comes.

[ProjectKylie]

Hi Donnaandfamily, I feel better now I've a short crop, at least it's a style and fun and funky. I went from past shoulder length, to a long short style, to a short style, but when the loss got going it was a mess. The wig shop cut my crop about an inch all over. I'm still shedding even after 2nd FEC both with cold cap. Go with what's best for you. x

[Donnaandfamily]

Morning all

Day 14 and hair now coming out in handfuls..........I think at the weekend I will take the plunge and have to cut it off......... makes me feel so  low...... wish it were time to wake up from this nightmare........ its hard trying to stay strong  at times......... but i am so lucky because I have a fantastic family ....hate seeing them suffering too ........

[Kirstykat]

Hello Everyone
I had my second FEC on Tuesday afternoon. I also did the paxman cold cap again. It was so much colder that the first time, maybe cos my hair has thinned and also they had it already chilled waiting for me. The first time round I found it bearable but this time it was hell. It made me feel nauseous near enough straight away. I was given amend but was sick 20 minutes into the session so obviously did not absorb first dose. They had to give me some intravenous anti-sickness and take the cold cap off 20 minutes early. Got home and continued to be sick but not as much as the last time and again the next day even though I had the second dose of emend and ondansentron. Managed to get it under control by adding the domperidone every few hours through the night. Such a relief to feel ok again. I am not even sure they will let me do the cold cap again I was shivering uncontrollably by the end of the session and the nurse said I had obviously had a really bad reaction to it. My hair had thinned a lot but still looks ok. Best wishes to you allxx

[Mel51]

Welcome Porkie.

Back home after PICC line being put in. Was quite a simple morning really and the nurses were fab!! Managed to catch a Headstrong session too whilst I was there. Back home with my whea.t bag on my arm -bit awkward at the minute, but I just need to get used to it. Hopefully all will be fine and ready for chemo on Friday.

[ProjectKylie]

Lollymum - I'm given Emend prior to chemo and for day 2 and 3. On day 2, 3 & 4 I take 8mg dexamethasone, I also have 10mg metoclopramide if nausea appears. I've been nausea and sickness free, yay 🙂

[Donnaandfamily]

Wecome Porkie......... glad to hear you are doing well despite having to undergo chemo again....... but its worth it x

Like you say we are allllllll looking forward to the summer to make the day brighter