Starting chemo in March 2014

[Stelwah]

Hi Ali24 - just to flag my nurse mentioned to avoid grapefruit, as think there's an enzyme in it which can impact on how effectively the chemo works. May be something to check as unsure of the definite facts around this.

[Mel51]

Btw I have used the Paxman for the first four chemos. I found it quite successful or the first three but they were FEC 75. Has anyone used the cc on FEC 100? I've been told and shown that the success rates drop considerably. Any ideas?

[Mel51]

Hi all,

Had face 4 (100) yesterday and feeling well today. Had nausea yesterday after about an hour, but went to bed and felt better by midnight when woke up. Slept really well but tired still. Got my flush on due to pills today and the heat isn't helping (not complaining about that!).
My op depends on how my tumour reacts to the chemo. If it shrinks by a cm I can have lumpectomy (WLE) but if not then it's a mastectomy - looking like the latter but I'm positive and have a never say never attitude!
Anyway try and enjoy the weekend and keep us all posted with how you're getting on.

[Ali24]

Hi All

Hope you are all doing well.  I haven't been on in ages.  Just trying to work through with things. Struggled emotionally at the beginning of treatment.  Thought things would feel more in control when starting treatment but sometimes it doesn't work that way.   Feeling much better now thought.  Did okay on the first two of FEC but struggled with the last one.  In bed most of the time feeling exhausted.  Getting 3TAX along with Herceptin next and dreading it, as have read the side effects can be worse, but at least should not have the nausea the same.  Not looking forward to the pains in joints and muscles.  I have been told it will take 6 hours to administer as it is a loading dose and have also been told that I need to inject myself the day after chemo (I get chemo on a Friday). My mouth is awful (liked the scouring pad description).  Have been eating pineapple by the load.   Have also been told that grapefruit quite good.  Haven't enjoyed any food since the start of chemo but trying to hold on to the fact that I am half way through.  I still have some of my eyebrows left albeit they have thinned out a bit.  Same with the eyelashes. 

Stelwah - good luck with the exercise regime. 

 I hope you are all keeping well and managing treatment okay.  Always feel better when the sun shines. 

[Stelwah]

Lollymum - I'm having chemo before surgery as well. Lump doesn't feel much different to be honest, had 4 rounds of Tax so far and will have 4 rounds of FEC. Am booked in for an ultrasound in a fortnight so hoping this shows some shrinkage. Are you due to have a lumpectomy or mastectomy? I'll be having a mastectomy, they've said they'll decide after surgery whether to give me radiotherapy as well. Hoping mastectomy means that it won't necessarily matter if it doesn't shrink much as they'll get it all anyway.

Good luck everyone starting Tax, just finished my 4 so FEC time. Horrible mouth/lack of taste def been the worst, not had red wine in months - tongue feels like had a scouring pad on it. Had bone aches in my hips this time, but none for the other rounds. Fingernails now started going brown in the middle and sore to press. And constipation been grim for first few days after chemo, so do ask to be given something to take for this - apparently down to the steroids not the chemo.

Need to try and build up my exercise - doing a Race for Life in a few weeks and normally run it no problem, but get quite breathless at the minute so think a few gentle walks could be in order. Just booked a week by the sea to look forward to - timed to fit the week before chemo when at my best - be nice to get away from all things medical for a break.

[LollyMum]

Mel found your post really helpful as I'm ER 8/8 too (I'm Her 2-). My tumour is large and isn't really shrinking although I do think my breast is less heavy. I didn't know the high positivity could mean it takes longer to respond so that was helpful.  I wonder why they are not switching you to Tax.  I was on FEC 100 - grim honey so will be thinking of you tomorrow. Ask them for EPEND anti-sick pill if you don't already have it. INSIST 🙂 

[LollyMum]

Hi All

I haven't been on in a while - I hope everyone is getting on okay. 

Having had 2 sessions of FEC my tumour hadn't shrunk at all (I'm having chemo before surgery). Really disappointed.  So my oncologist switched me over to Taxotere early.  I found it much easier to deal with in terms of the nausea etc. I got really bad stomach pains all through my gut on day 3 and 4 but they wore off. My only other symptoms have been sore/numb fingers and my taste buds aren't working.   I am due to have chemo 4 - second round of taxotere - on Thursday. I am still not aware of any tumour shrinkage but desaparetly hoping. What are the risks of the cancer spreading if my tumour doesn't shrink by the time they do surgery?
The other down side was that I got admitted to hospital on day 5 with an infection. My arm is now buggered from all the cannula and blood sites. I'm nervous about having yet another next week. It was awful being in hospital - but was for the best I guess. I've been on strong antibiotics at home but finish today!!  

I actually feel well - I haven't had the joint pain and the muscle pain others have had.  

LM

[Eitaki]

Hi girls. I had my first tax and subcut herceptin on tuesday. All going well so far, taste buds left this morning, waiting for the bone aches i keep hearing about. Havent been given any pain relief so no idea what to do if the pain gets horrendous. For now I feel fine just a little tired. Hope everyone is doing ok!

[Donnaandfamily]

Thank you Buttercup......hope we all fare as well xxx Donna

[Buttercup01]

Hi All, had my 1st Tax last Friday, went fine and I even felt ok up to the evening of Day 3! Day 4&5 are definatly the worst, had to pop co-codamol every 4 hrs to ease the bone aches and my mouth feels disgusting, nothing tasting good. I'm now on Day 6 and can feel I'm getting better again, energy levels are still low but this nice weather helps getting some fresh air through the house 😊 Take care all xx

[Mel51]

Thanks, Elsieoc. All aboard the chemo train!

[Elsieoc]

Hi Mel51, I hope it goes OK for you on Friday xx

[Mel51]

Back from onc and been told that the tumour hasn't reduced in size, but hasn't grown either. There's signs of necrosis and because I've got a very ER+(8/8) tumour which can take longer to respond, I'll be staying on FEC, but FEC 100 instead of 75.
I'd got myself all set up to be changed to Tax!! Oh well, FEC again on Friday.

[Elsieoc]

Had my first round of Tax yesterday. Was so anxious cos the FEC was given sitting in a chair & this time had to have a bed in case of any reactions so this freaked me out a bit. Luckily everything went fine. So far I am feeling better than I did on the FEC but I have been told that the effects won't kick in for about 3-4 days so making the most of feeling OK for now.

[Mel51]

Good morning ladies. Hope you all managed to enjoy the bank holiday. Not much to report from me except that I feel fine now (day 12 of FEC 3). Heartburn really hung on in there this time and my taste is ever so slightly still off, but been quite fortunate. Had my MRI scan on Friday and I was covered in blood when I'd finished as my cannula wasn't in correctly. I tried to tell the radiographer, but they were having none of it. To be honest, Friday was the first time I felt like a number in a system which is a shame as the standards in care in my hospitals have been outstanding!! Here's to hoping there's been some change and also to an easy transition to Tax. Enjoy the rest of the week and hope you're all doing well.

[Stelwah]

Agree with MysticalMoo - had 3 rounds of Tax, and have hardly had any leg hair since round 2. As someone who'd normally have to shave her legs every day on holiday, this is one side effect that can last as long as it likes! Have some fine hair left on my head that hasn't fallen out, but looks awful so tempted to shave it off.

[Mysticalmoo]

On tax I have had silky smooth legs (and everywhere else...!) and have lost about 50% of my hair despite using cold cap.... So I'm afraid you do get hair loss with tax...

Donnaandfamily, on the plus side, your yeti legs should resolve without resorting to the razor!!! ;0)

[Donnaandfamily]

Hi Mysticalmoo

thank you for your post.......... it helps us prepare mentally as we swap over onto the Tax and herceptin xxx

[Donnaandfamily]

Hi Debs

well....bloody typical about hair not coming out on Tax....... I still have yeti legs with toe hairs.....so can anyone tell me how to attractively french plait my leg hairs lol 🙂

[Debs-]

I started my fec3 yesterday..doing alot better on it at mo than 1st two. I also start tax and heceptin in 3weeks time. dreading the change but was told that tax overall tends to be better than fec although as you know thats just a general and they cant guarentee that for each individual !! Thay said tax tends to hit 3-4days after and symptoms im now used to will be shuffled with possible added pain !!! Also told me that hair tends to stop falling out with tax but just does not grow!!! Maybe i should of held onto my hair knowing that....bit late now !!

[Donnaandfamily]

Hi Ladies....

hope you all as well as can be and looking forward to the long weekend

Had my 3rd FEC yesterday.....next one TAX and Herceptin. Its horrible when just got to grips with FEC side effects...now to start a new bunch...oh well as long as it does the trick!

Herceptin loading doose have to be  there for 6 hours...then have first tax the following day

I was due to have gynae appointment on same day....but luckily that has been cancelled until july.......... I have 10cm ovarian cyst which they monitor and will hopefully remove once completed chemo.....

Sending hugs to everyone who is feeling under the weather ......xxxxxx Donna..

[Stelwah]

Hi Wyn, thanks for tip on constipation meds - agree this has definitely been an issue on Tax, so I'll ask for this 🙂

[wyn]

Hi ladies just popped in from december angels to wish you all well on your chemo journey.

Mel51 &lollymum I too had fect prior to surgery and finished 20th march. After 2nd fec I was told by my oncologist that my lump was shrinking but not as much as they would have hoped and therefore wanted to optimise this by putting me on to taxotere straight away rather than wait until after 3rd fec, i was also dissapointed and scared at the time that chemo wasnt working the way it should have, however tax had most certainly done the job as I was told after op that the tumour had shrunk from 27mm to 8mm and they got clear margins( Yippee). so I hope my news helps you to be more positive.

It is also unlikely you will be sick on Tax and I did not need the antisickness meds but side effects may include joint and muscle pain,sore mouth,constipation followed by tax trots etc but it is do-able. Try and get lactulose for constipation from your gp as this helps.

Best wishes to everyone

Hugs

Wyn x

[Stelwah]

Hi Mel51 and Lollymum. I'm on Tax - had 3 rounds and got last one next week before moving on to FEC. If you scroll down to my previous post this month, have said what the side effects have been like for me. Not as bad as expected, sounds like everyone's experiences of FEC have been worse. Had a few days of breathlessness last week which hasn't happened before, so going to keep a check on this. No sickness at all, so been fine to eat with tablets etc. Hope all goes well, not had a scan yet to see how my tumour is responding but it doesn't feel any different.

[Mysticalmoo]

Hi Mel51 & Lolly Mum,

This is my first post... But I have just completed my third tax today so may be able to offer a bit of advice/ reassurance.

You have a large steroid dose for 3 days (day before , chemo day and day after) which causes flushes and sleeplessness. Can get sleeping pills (zopiclone) to help. My trmt was on weds and Friday I start to ache, pain is worse for me on sat and Sunday and I have had to have strong painkillers and a reduction in dose. Speaking with with my oncologist on Friday she said my level of pain been exceptional. Most people can manage with strong over the counter painkillers such as ibuprofen and, with monitoring of temp, paracetamol. I got tramadol from the GP and this has helped. The pain randomly stops about 4am on Monday morning! Very punctually! Fatigue follows but over next 2-3 days I begin to feel normal. Also nurses have said that pain may be due in apart to the neulasta injections I am having... Will only know for sure when I start fec in 3 weeks.

Other minor SEs include mouth soreness and ulcers (managed with difflam, corsadyl and regular brushing), bit of numbness in fingers (same days as pain) and absolutely no taste! Everything tastes of wallpaper paste and I cannot detect any sweet or salty flavours at all. Very boring mealtimes. You also need to think about icing nails (feet and hands) during infusion to avoid damage later and painting them a very dark colour throughout treatment and for a couple of months after...

My lump has shrunk quite dramatically... 9cms on initial MRI. After 1st round, oncologist measured 6cms (I know this is not as accurate and I will know for sure on next MRI in 2 weeks) but on Friday after 2 rounds she said is now less than 5cms. It is also now soft and very jellylike so the tax has worked for me. I sincerely hope it works for you. There is nothing so soul destroying as going through this misery and not getting the reward of good shrinkage.

I apologise for this humongous reply but I was craving information before I started and there is not a lot of experience with tax as most start with fec... So I hope you will find something useful in my waffle!

[Mel51]

Hi Lolly Mum. Thanks for the suggestion. I'll grab some tomorrow when I go to the shop.

I was also told that my tumour has not responded to the chemo and will probs move onto Taxotere as of my next cycle. I've got an MRI on Friday to confirm this. I am also very nervous about the change in treatment as I've heard so many horrible things about Tax. Also, it feels like someone has just shifted the goalposts - I'd just got used to my routine with FEC and now this?! I suppose that at least we know it isn't having the intended impact and can change it now.
I really do see where you're coming from and if there are any ladies who can help us out, we'd appreciate it!!

[LollyMum]

Hi ladies, 

Haven't been on for a while as I've been getting lots of anxiety so trying to blank out altogether!  I had poor results yesterday in that my tumour hasn't shrunk on the FEC. I'm gutted as I've lost most of my hair and felt really rough the first few days of both cycles so to know the cancer hasn't really been shrunk has really brought me low.  However my swollen lymph node has disappeared so that's positive. 

So tomorrow instead of my third FEC I'm going on to Taxotere. I'm so nervous.  Are the symptoms / side effects worse on this one? I'm dreading it. I have all the anti-sick pills they can give but I'm worried about how I'll get the steroids down as it says to take with food but on FEC I couldn't eat or drink for about 4 days.  I wasn't sick but felt sick if that makes sense. No appetite at all. Water tasted foul too so I had some kidney problems as I wasn't drinking enough. 

Any tips?

Anyone else had the Taxotere? 

[LollyMum]

Hi Mel51. I had really bad heartburn on chemo one and I found broccoli and most of all purple sprouting broccoli really, really helped.  I even wanted it for breakfast the heartburn was so bad.   My oncologist suffers and he's been ordering it by the bucket load from organic farm 🙂

[Mel51]

Hi ladies. The heartburn has come back with a vengeance. The other SEs have all been fine, but this is tough. I was prescribed some Lanzaprozole (sp?) but not sure if it's really doing any good? Anybody got any other ideas? It's not the burning that's an issue, it's the stuck at the back of the throat feeling I hate!

[Elsieoc]

Any tips for easing a sore tongue?
I have been using difflam for the last few days & GP has just prescribed me some gel but neither seem to have any effect

[NoraBatty]

Hello ladies just dropping in from the March 2013 thread to wish you all well. One bit of advice I got coming up to second lot of chemo was to  takeboth ondasetron and domperidone 30 minutes before eating – this  seemed to help. (not sure why I wasn't told this from the oputset and there was nothing on the patient info leaflet...)At the time the chemo seems to go on forever but the time will pass. Be kind to yourselves.

Nora xx

[Butterfly318]

Evening Ladies

Hope you are all doing OK, at various stages in your Fec T journey.  Thinking of you all

Hi Stelwah. 

GCSF / Filgrastim / Pegfilsrastim / Neupogen / Granulocyte Colony Stimulating Factor / Neulasta and some other names will be out there.  The unit where i had my Chemo use one large dose 24hrs after Chemo..  Hips / Lower back / upper thighs all really painful within 24hrs of administering the injection.  Some units use a very low dose for 3/4/7 days and some units only use it where patients are struggling to fight infection / build up white blood count.

It is strange that all units work differently and use of GCSF doesn't seem to be standard practice. 

Take Care    Gilly x 

[Mel51]

Off for FEC3 tomorrow - half way through. Keep going ladies! How are you all doing?

[Eitaki]

Mine are called Lenograstim, also 1 a day for 7 days to raise white cell count and hopefully reduce the chance of me becoming neutropenic again.

About hair...I shaved mine off when it started coming away in handfuls and I was sick of finding it in my coffee/food etc, it was 15 days after my 1st fec...never did try the cold cap. My sister shaved it a number 2 all over and i developed 2 complete bald patches, but the rest of my hair is still there. I dont get it, i thought it would all come out. Im hoping this doesnt mean the chemo isnt working as well as it should.

[Elsieoc]

Stelwah,
My injections are filgrastim which I take 1 a day for 7 days after each chemo.

I didn't shave my head just got it cut a bit shorter but I did find it quite painful for a couple of days when it first started coming out. I still have a few tufts of hair on my head although most of it has gone. My eyebrows, eyelashes & leg hair are still intact so far through.

[Stelwah]

Hi Eitaki and Lorna. What are your injections for? On Tax, I have one injection day after each chemo to try and help with white blood count level - sounds like this is standard practice. I work next door to the hospital, so been easy for me to nip in and get nurse to do it - you can do it yourself though, but I'm being a wuss!

I've had a nice couple of days off work, and treating myself to a back massage this afternoon (CNS said was fine as long as gentle and not too hot) and trip to theatre. Deciding whether to shave off last sad remnants of hair, or whether to leave them in case they are helping to stop my wig bring itchy. Could do very plausible Hamlet cigar photo booth advert at the mo! Has anyone lost eyebrows/lashes, as mine seem to be hanging on in there (touch wood).

[Elsieoc]

Hi Stelwah,
Thanks for the reassurance about the Docetaxel. Apart from the sickness at the start I haven't been too bad with the FEC, mostly tiredness. I hope your treatment goes OK.
Eitaki,
I have been doing my own injections & it gets easier. I was lucky enough to have the nurse guide me the first time & she told me to put needle in at a right angle & press slowly, counting to 10.

[Eitaki]

Hi everyone. Onc allowed me to have chemo yesterday, seems my bloods recovered enough. Im now on daily injections for 7 days that me/hubby have to do. I gotta be honest, im **bleep**ting myself. Neither of us have ever had to use a needle and syringe in our lives! District nurse was too busy to add me to the list and i didnt fancy having to travel to the chemo unit every day (they are shut on the weekend anyway so id have no choice). Also been given more antisickness meds on top of emend. And! That was my last fec! Onto taxotere next round. 

[Mel51]

Hi all,
Just back from seeing onc who has requested an MRI scan (2nd one) to ascertain if tumour has changed as it doesn't seem to have changed in size. If it hasn't iI'll be swapping to Taxotere as of my 4th chemo. Chemo number 3 this Friday. Can't say I'm looking forward to the Taxotere, but will have to wait and see what it brings my way!!

[Stelwah]

Hi Lorna. In case it helps, I've now had 3 rounds of Docetaxel and not had any bone aches/pains at all, and no sickness. Main side effects have been lack of taste/white furry tongue (still can't face thought of Easter eggs, just can't do milk/cream) and tiredness, which both go after a week or so. I've been put on 4 different drugs for the few days around the chemo, and an injection in the tummy day after. Not been as bad as I'd been expecting and warned about - everyone's experience of FEC sounds much worse, which I am moving on to next after one more round of Tax. Have picked up helpful tips on drinking lots of water and which drugs to ask for from this forum, which I'm sure will come in useful.

[Elsieoc]

Had my 3rd round of FEC on Saturday. Feeling pretty yuk but nothing like the first 2 rounds.

First time I spent 3 days in bed & severe vomiting but on day 3 they changed my metoclopramide to cyclizine & this stopped the vomiting.

2nd time they gave me emend but kept me on the metoclopramide. This stopped the vomiting but still felt nauseaos and took to my bed until I spoke to them again & switched to the cyclizine again.

This time I have had both the emend & the cyclizine from the start and this had worked much better. I wish I had queried this last time & asked them to change the other meds but you don't always think to question them.

Next round is the docetaxel. They are not giving me emend for that because they say it does not make you sick but have told me to expect severe pains after about 4-5 days & have prescibed strong painkillers so I am not looking forward to that at all.

Best wishes to everyone else going through the same journey.

Lorna x

[Buttercup01]

Oh poor u! R u home now? I can't see that they'll give u FEC3 on tues, surely you'll need your levels back up!

[Eitaki]

Had no temp at all and felt perfectly fine. I was seeing my brrast surgeon coz my breast was red and sore, they ran blood tests to check for inflammatory markers which come back high, was admitted to hospital right there and then for iv antibiotics. Thats when they found out my neutrophil level was stupidly low. 

[Buttercup01]

Oh dear that's bad! Do u know what caused it? Did u have a temp etc? xx

[Eitaki]

Hi all, im meant to be having 3rd chemo on tuesday but spent 8 days in hospital with neutropenia. Levels went right down to 0.2 but yesterday they rose to 0.6. Normal is 2.5. Highly doubt they would have recovered enough by Tuesday. 

[Buttercup01]

FEC3 completed yesterday, not too bad today but I know it's gonna hit tomoz and last for 5 days 😕 my mouth is becoming drier by the min and I was having weird frantic dreams last night (prob the steroids).
I was also given the steroids to take before the T and was told I have to take them to prevent an allergic reaction, if I don't take the steroids then they won't do the T, it sounds a nasty reaction!

[Mel51]

Rose berry - sorry to hear that FEC 3 hasn't been as smooth as expected, but well done for going for a walk along the beach!! I also felt sick as soon as the chemo was over - in fact, as soon as the final drug was being injected. Have to wait and see what FEC 3 brings on Friday.
Happy Easter to all of you!!

[Roseberry]

Well, it is now day 3 after fec3 and I am yet to go to sleep! Felt nauseous much quicker this time around and had crazy hot flushes on my face and painful cramps in both thighs on day 1. Felt tired and nauseous yesterday, day 2, but still managed walk on beach yesterday afternoon  with friends; ate fish and chips too! Didn't feel great but feel better in myself just getting out in the fresh air and seeing friends.

Mel51, my scalp was also painful when wind blew hair but it feels so much better now hair shaved and I feel less stressful.

Projectile, I have already been given steroids to take before chemo 4T.my chemo nurse did say that fec side effects were usually worse but to expect aches and pains with T. Guess we just have to see how we react individually but we are now halfway through! 

[Buttercup01]

Hi All. Well it's FEC3 today 😕 let's get it done and then I'm half way there!
My eyes & nose have been streaming also, I thought it was hayfever? It's the chemo is it??
I get emotional from day 3 through to 6, I've accepted that now and if I want to cry I just do it! My boyfriend thinks I'm a loon and doesn't know what to do with me on times but I do feel better after a cry!
Best wishes all and happy Easter xxx 🐰

[Mel51]

My scalp has stopped being tender- the wind blew my hair a month ago and I nearly cried!! I've lost less hair the past couple of washes but it thin and a bit of a gap down the parting and on the crown. Will speak to the nurses next Friday and see how effective they think the CC has been. I've only seen one other person using it at my hospital so have nothing to compare my hair loss with.
My lips, hands and feet get very dry so I'm forever coating myself with moisturiser and lip balm.