Taxotere here I come !............

Hi all

I know there is a ‘1st Taxotere’ thread, but it’s quite long now so I thought I’d start a new one.

Having completed 4 x Fec during Nov-Jan and 20 rads sessions Feb/Mar - I am about to start 4 x Tax this wednesday (2nd April).

Despite having ‘sailed’ (relatively speaking) through the fec - for some reason I am terrified of the tax (maybe because the warning on their website is a bit off putting to say the least lol).

I’m also annoyed because for some reason I didn’t think tax made your hair fall out, thought it just slowed the regrowth down - and during rads my hair has been growing back steadily so I have about 5mm all over now - and now I discover it’s going to fall out again grrrrrrrr

I didn’t realise your blood count dropped quicker with tax either - on day 5 - and I’m due to go on holiday on day 5, only to the lakes, so I could be home within 2 hours if anything happened I guess.

I’m sure I’m worrying over nothing - and I’ll be fine - but hearing from others who’ve coped would be good lol !

take care

Margaret x

Hi Margaret I had FEC then Taxotere then rads. I was nowhere as sick on Taxotere as I was on FEC. I felt it was much, much better!! As my hair had already come out I didn’t notice what happened when on the tax. The first one is the worst I find and then the rest were pretty plain sailing - nowhere near as bad as I thought. I did find that for a couple of days after I had diarrhoea whcih appeared without warning, so I didn’t got too far from the house! Good luck, I’m sure you’ll find its not as bad as you think.

Sharon

Dear Margaret - I know we chat on the other threads, but as you say they can end up quite long. Just wanted to say that I have now had two Taxoteres with my third due next week. I can honestly say that I have felt better with it than the FEC, and it has been great not to have the nausea. The main side effect has been the bodily aches and pains so be sure to check with the chemo unit what they are happy for you to take, I have used both paracetamol and neurofen when needed, but every unit seems to say something different. I have worn a darkish nail varnish on toes and fingers all the time and my nails seem to be the longest and strongest they have ever been! (Am also given cold mittens to wear while being given the taxotere). Have had a yucky mouth sometimes - but no ulcers, and also a feeling that my tongue was too big for my mouth which is a bit odd. Actually having the Taxotere seemed a lot more acceptable as it is just one infusion of clear liquid, not that red colour of the Epi! Didn’t know about the white count being lowest on day 5 I must say - the docs have continued to talk about day 10 - 14 to me. My Neutrophils did go down so I had to have a Neulasta injection on day after taxotere for 2nd and 3rd dose. As for the hair business, my head was totally bald after FEC, but I have quite a lot of fluff now - is there any chance you might hang on to yours? Anyway Margaret, this is just to wish you the very best of luck and hope that you will have a super holiday. I am sure you are really ready for it after the radiotherapy. Hope you experience of Taxotere is not too bad, like mine. Trouble with web sites etc is that they list every possible side effect, I would recommend you just wait and see, quite a lot of us seem to think it has been better than the FEC. Love Sarah xx

Thanks for the quick responses Sharon & Sarah - I guess I’m just getting myself wound up lol - it seems so long since the fec, and it’s quite nice that all those side effects are a distant memory - guess I just don’t want to go through it again lol. I always wondered why they put my rads in the middle - but the ‘chemo free’ weeks have been a blessing - I couldn’t have done 8 chemo’s in a row I don’t think - so well done those who have!!!

thanks again

take care

Margaret x

Hi Margaret,

I’ve just had the last of my 4xTax following 4xFec (will start my rads end of May). I was told my white count would be lowest days 10 - 14, but the effects of the Tax started on around day 4-5. I too haven’t felt sick at all on Tax, but have had the achey bones, sore fingers and runny eyes (although the eyes didn’t start till after the second one). Neurofen and paracetamol really helped with the aches and pains, and the sore fingers are more of a nuisance really - especially on a cold day when struggling to do up my sons muddy laces on his football boots!

Hope you find Tax okay, it seems lots of women do, oh, and my hair started to grow back on Tax, straight away, very slowly, but it might mean you’ll keep what you’ve got - hope so!

Take care and have a good holiday!

Love Louisa xxx

Hi All,

I’m so glad this thread has been started. I am due to start the Tax next Tuesday 8th and to be honest I am dreading it. The thought of aching joints frightens me. I think I have read and heard a lot on how this is the hardest one. I’ve had 3 epi so far and to be honest have not been too bad.

Thanks for all taking the time to comment on your experiences so far it really does eliminate some of the fear.

Regards
Sukes

Hi - sorry to be the bearer of my bad experience here !

FEC was okay-ish but I found the Taxotere very hard, but doable - you have to do it and get through it. Everybody is different I know.

I used to have mine on a Wednesday and by Saturday afternoon I was starting with the aches and pains, awful mouth, taste etc. My tongue felt big and like sand. Everything tasted foul - I used to lose half a stone with every tax but of course put it back on before the next ! The pains were terrible and lasted until about the Tuesday. I had no sickness but did have heartburn with both FEC and Tax. Had a very bad sore throat and ulcers with the Tax too.

Finger nails were awful. Went very ridged and finally peeled. Toenails are starting to do that now and my last Tax was 28th November. Still have aches and pains in all joints.

I lost my hair just before the 2nd FEC and it actually started growing back before the end of my 3d Tax but only slow growth as I believe it’s the Tax that affects it.

But, all that said, it’s supposed to be the gold standard of chemo for breast cancer.

Liz xx

Thank you so much for all your comments - yes - even yours Liz lol - I’d rather be prepared. My nails are still pretty awful from the fec. a horrible orange colour and peeling around the base, I tend to keep the nail varnish on most of the time so I don’t see the mess they’re in!

According to the nurses I was good with fec (not sure how they know what I was suffering lol) - I had horrible taste in mouth, no ulcers though (which I’m dreading because I have false teeth and I’m terrified of not being able to wear them lol - amazing how I can go with no hair and only one boob, but couldn’t leave the house with no teeth in haha). Also got absolutely dreadful heartburn and constipation - both of which were cured with lansoprazole (heartburn) and movicol &sennokot (constipation).

I lost my hair just before 2nd Fec too - I now have 5mm ish all over and I’m so hoping it keeps growing as my daughter is getting married in July and it would be lovely to have SOME hair !

The fact that they believe I was good with fec is what leads them to believe I will be awful with the tax - guess I’ll just have to wait and see !!

take care all

Sukes - hopefully we can compre notes on here and see how we get on !!

Margaret x

Seeing as we have a national health service I don’t see why you couldn’t talk to someone at Carlisle if on the off chance you had a problem while up here in the lakes.

The Carlisle people have been great to me, and are fully equipped so I wouldn’t worry too much. If you feel up to travelling and can avoid people who have nasty lurgy (colds :wink: then why not.

Of course you should know I haven’t started chemo yet and am being a little freaked by the idea so am building myself up with everything so don’t get the impression I’m strong or anything. I’m just hiding behind a wall of vitamin bottles :slight_smile:

Angie

Hi, just had my second dose of Tax/Cyclo so thought I would add in my experience so far. I’ve read that the nadir (low white blood count) is days 7-10 for Tax, and days 10-14 for cyclo.

My hair started falling out at around the 2 week mark, but at the 3 week mark, following my 2nd dose, I’ve still got a light covering on my head (i shaved it down to 3mm when it started falling out) and still have all eyebrows/lashes in tact! Havent found it too bad - a couple of ‘mouth’ issues, solved easily with oral drops, but definitely experienced the muscle/joint pain around day 4-5. Tried to push through it first, but then gave in and took some panadol, which seemed to do the trick. Most side effects were during week 1, and I sailed through weeks 2 and 3, feeling 100%.

All in all, not too bad, so I hope it goes the same for you! I’m also taking a herbal supplement, a mushroom extract called PSK (or PSP) in some markets. It’s been clinically proven to boost the immune system and particularly good for cancer patients, so you might want to have a look at that.

Good luck!

Hello, I just wanted to come in and clarify that at Breast Cancer Care we would always recommend you discuss with your cancer specialist any complementary therapy including dietary supplements before starting them.

The difficulty often is that dietary supplements have not been tested in clinical trials, and so we can’t be sure what affect it may have in combination with other drugs

BW’s
Tara
Clinical Nurse Specialist

Hi Ladies

thought I would add my comments too - I have had 4 of 6 tax and found each one different. The first I had raging diarrhoea for the first few days and very achy joints in the last week, no sickness throughout. Two and three just a churny tum and aching joints - particularly in week 3. the fourth has been really quite bearable, i am on Diclofenec for aching which really has helped. I have had low Haemaglobin counts (94 and 93) on the last two chemos so have had two transfusions.

But all in all quite bearable. My mid way scan showed that the mets in liver and nodes in lung have gone and bones and lung are stable. i too hope for good things of the last two tax.

Good luck to you all jan xx

Hi All,

Sukes, try not to worry too much (easier said than done I know) but the aching bones side effects were for me similar to how you feel when you have bad flu, kind of shaky and achy and plain old ibruprofen tablets really do help control it. I would say that I’ve had quite a few of the side effects on the very long list of side effects, but, not all at once and not after every treatment. I think after no. 1 I had mouth ulcers but not after any of the others. Same with dodgy tummy. So just try and take each one as it comes and if you have a really bad day, chances are it’ll only last a day or so. Thing I learned on Tax was when you’re feeling worn out - rest! I was able to carry on pretty much as normal on Fec (even went to the gym) but have done a lot less on Tax as have just felt washed out as the treatment progressed. Having said that, I’ve had no infections, lost no nails and have watched a lot of excellent movies!

Hope your treatment goes well,

love, Louisa xxx

Louisa,

Thanks for the adivse, hints and tips. Reading the threads its clear everyone experiences different symptons so we have to take it as it comes.

i will keep you updated on my progress and thanks for taking the time to respond.

Sukes

Hi Margaret

Its Jackie here back from the old round of chemo = FEC now finished and have just had my second round of Tax which I hate !!! Really have struggled with the aches and pains and have been put on full strength co-codomol and orimorph for the pains. They seem to follow a pattern where I have four bad days then I gradually get better

Still have the hair loss and hot sweats but no nausea really, no ulcers I think it just effects everyone differently. Blood levels do fall day 4 -5 but I have also been having the injection which also contributes to the aches and pains as the side effects for the jab are the same so I am having double whammy !!!

Really lovely to see and read a thread from a “friend” glad you are OK and coping well, as usual, done are more decorating ???

Jackiexxxxxxxxxxxxxxxx

Hi all

Jackie - Afraid all the decorating has gone out of the window lol.I thought i could finish it while I was having my radiotherapy, as i would have tons of spare time but that was scuppered by the fact that I had to go and live in Edinburgh Mon - fri while I had it - so was only home at weekends. At the moment I am so tired, or lethargic, after the rads that I really can’t be bothered - still i’ve been renovating the house for the last 5 years so I guess a few more months waiting won’t hurt lol. Nice to hear from you again - I asked about the injections today and was told that my Health Board don’t do them routinely - if I get sick they’ll consider it !!

Angie - thanks for that about carlisle - to be hones if I had to come back home I would probably carry on to my local health board - I live in Dumfries & Galloway so would only have to travel anothr 20 odd miles from carlisle to be on ‘home’ territory lol

Well had the first tax today - blood tests showed that my white count has been taking a battering from the fec - at the start of my first fec way back in November my WBC was 9.8, at each recovery it lost about a point, and after 4th fec was 5.5. I had imagined that because of the fact that I have now had no chemo because of the break for 20 rads sessions for over 8 weeks - it would have rocketed back up to normal - but it was only 4.6 today ! Concerns me, but they weren’t too worried. I guess I just rememebr the first fec, where the WBC fell from 9.6 to 0.6 in 6 days - and now i’m thinking omg if it falls frm 4.6 where will it go!!!

but hey ho - I’ve just got to get on with it. Apart from feeling sooooooo sleepy when I got home (mainly cos the stoopid steroids kept me up till 6 am lol) and a bit of mild heartburn, I’m okay the now - early days though!

Will report back when any thing more severe kicks in

take care all

Margaret x

Hi Margaret, Just a quick hello to say well done getting the first Taxotere over and done with. Know what you mean about the steroids, and don’t be too surprised if you feel really tired over the next few days. I am sure you are tired from the radiotherapy anyway, as well as still recovering from the FEC, so please be extra gentle with yourself! Hopefully you will have a lovely time in the lakes, especially if you can really laze about! Must say, I am now feeling deeply tired, my OH and teenage children have gone to the coast for three nights, but I felt I just wanted my home comforts - I am up and down so much in the night it it ridiculous! Will have a lazy time at home with some good books and my choice of programmes on the telly!!! My last taxotere next Thursday, finishing line in sight which is a great relief! Have a lovely time away. Sarah x

Hi
just to add my bit !
I was fine with the Fec , some side effects but nothing serious just absolute lethargy after the first one. The first tax I had the achy limbs and although not painful felt uncomfortable around my chest area. My onc said it was the increase in steroids so gave me lanzaparasole which was great. I also got very down after the tax and was ready to throw in the towel but was given extra steroids to bring me down abit more gradually.

I also ot hot and cold sweats and felt very clammy around day 5. Felt very restless too , just couldnt relax at all. My nails have gone weak at the ends but so far that all. All in all it was actually ok . Amazing what you can live with though . Had bad taste in mouth, tingling in fingers in toes and fingers, constipation but as I was expecting a lot worse to me it was all manageable . I was absolutely dreading Tax and it was ok . Each one was a bit different though , so even though I was expecting aches with tax number 2 I never had any so theres a lot of positives there.

Hope it all goes well
cally x

Hi ladies,
I’m having my 4th Taxotere/Herceptin tomorrow at the wonderful Linda McCartney Unit.I would recommend staying away from people if you can the first week.After my 1st session my temp was over 38 and I fainted at home so had to ring hospital and they called me in and I ended up staying there for three days with an infection.Even though I felt ok they wouldn’t let me go home because I was neutropenic.
I get aches and pains in my joints,fatigue and taste buds go every time which lasts about a week/week and a half,then I start to feel ok until the next session-this time is wonderful and precious so make the most of it!!
Hair started to fall out exactly two weeks after 1st session,so got it cut short,then a week later my friend shaved it all off.
After 3rd session I got extremely itchy rash on bum then sores for about a week.Very uncomfortable!
Also red rings and ridges on finger nails.
The best thing is that I haven’t felt sick at all(which was my worst fear)or had diarrhea and I’ve still got eyebrows and eyelashes.
So all in all it’s not as bad as I had feared.
I hope it all goes well for all you newbies starting it!
Alli xx

Well - what did I say about anything worse kicking in???

Lizziee - can totally relate to everything you said now. Compared to this, Fec was a breeze lol. I have never felt so rough in my entire life. I’m on day 4 after 1st Tax, and feel like I have been run over by a herd of stampeding bulls. I ache in places I didn’t know I had, my mouth,teeth, tongue all feel like they don’t belong to each other, my face aches. Have spent the day swinging between sleeping (rarely), crying (often) and generally feeling extremely sorry for my self (continually lol).

Someone please tell me the aching doesn’t last long - it’s bloody awful, much much worse than I had anticipated. Guess that’s one up to my BN - who did warn me that I did so well on Fec I was likely to do sh*te on Tax - should’ve listened harder obviously.

To cap it all, having just got out of a very long bath, trying to relieve the aching joints - I have a patch of bruising on my remaining breast (which I pointed out to BN way back last December) - it is now still bruised, but feels very scaly, like huge patch of dry skin, and is getting redder - I don’t need this just now - sure it’s nothing but my mind is in overdrive. If I didn’t ache so much I’d just get into bed and throw the duvet over my head and hope I wake up tomorrow disovering my life since November has been one big big nightmare.

Hopefully be back later in a better frame of mind :frowning:
Margaret x