Hi there i was just wondering if any of you can give us some advice on Taxotere. There are a few of us on here about to start it and are very worried. Would like to hear other peoples experience of it, good or bad, for warned if for armed and all that.
Thanks, Pauline x
Hey Pauline, how are you doing?
I totally understand your fears but my experience was the anticipation was far worse than the reality. I remember reading all the SE for Taxo and convincing myself that it was going to be hell but it wasn’t. I had 3 cycles and the first one was the worst although I wasn’t so bad that I couldn’t look after my wee girl. I had joint pain for a few days and had to upgrade to tramadol pain killers which helped a wee bit but after a few days I was fine and didn’t need anything, I had no problems on the other 2 cycles.
I would advise drinking lots of water before during and after the chemo and asking for an ice lolly or iced water during the chemo to protect your mouth, I did have a couple of mouth ulcers but nothing dramatic.
I must say though that everyone is an individual and reactions are different for everyone but it’s my experience that for every problem on chemo there is usually a solution. You’ll get through it.
Take care and if you have any questions don’t hesitate.
Veggie
Hi
I am also about to start on Taxotere, on 12th Aug and have been reading the posts which mainly refer to the other chemo combination, known as FEC, so I am also interested in any info on Taxotere. I also have read the list of side effects which make me come out in a cold sweat!! Any tips gratefully received - eg water, ice - good, thanks. My plan is to continue going to work (desk job) as much as possible - has anyone else done that and how did it go?
I comfort myself by thinking that they have to list all possible side effects so that is the worst scenario but that hopefully I won’t get them all/ get them too bad! The doc did tell me that I will definitely lose my hair and that cold cap treatment is not an option. I believe we get an NHS voucher for £100 for a wig and I have made an appointment for a consultation at the “wig shop” where I live.
At first, my greatest concern was losing my hair but now that is paling into insignificance! It’ll grow back, grey but thats life. I’m getting it cut short next week to make it a bit less traumatic when it starts to fall out!
Dae x
Hi Pauline
Do try not to worry too much about Taxotere. No chemotherapy is pleasant and Taxotere can be very unpleasant, but no-one is going to give you something like that unless they a) think you can handle it and b) think it is necessary.
I had 6 cycles of Taxotere last year and I found my SEs (listed below) to be cumulative.
I got boneachingly tired.
Skin peeled off hands and feet - but only once and then they were fine.
Lost my hair (natch) and my fingernails (despite the ice mittens) too in the end. Nail beds became very sensitive.
Got very constipated.
Lost my sense of taste. Well, to be truthful it was replaced by a horrible taste in my mouth, which I generally countered by sucking sugar free sweets
Had a lot of thrush to start with, but managed to get it more or less under control for the last three cycles.
Was plagued with fluid retention towards the end (hands, feet, legs,area around Portacath, particularly).
It sounds like a lot to contend with, but don’t forget that you can be given products such as mouthwash, cream, laxatives, diuretics (possibly) to help with all this. If things really get too bad, they can also reduce the dose of Taxotere to a certain extent without compromising its effectiveness.
My own mantra was to do nothing that didn’t need doing or couldn’t be done by someone else and rest/sleep whenever I felt like it.
Good luck!
X
S
PS Dae - I worked part-time through having FEC (financial necessity!) a few years ago, but don’t think I could have done the same with Taxotere - possibly one week in three for the first three cycles and then, for the last three, I was just too exhausted to think straight. But there are defintely people who sail through what is generally acknowledged to be a tough regime, so you may be one of those, you never know!
Hi Ladies,
I had four cycles of Taxotere which I completed in Feb this year.
I had read all the reports of possible side effects and they did scare me but I have to say it wasn’t half as bad as I thought it would be.
Mine was administered through my Hickman line as I had bilateral surgery.I drank loads of water before,during and after which I believe helped.
I didn’t sleep much because of the steroids but around day 2 after having chemo would have to take myself to bed. I couldn’t be bothered to read, watch TV or anything so just dozed on and off and usually felt better the next morning.
I took Manuka honey for mouth thrush which also helped. The nausea is controllable don’t think that you have to suffer, my chemo nurse and BCN were always on hand or just a phone call away.
I found the aches and pains manageable with painkillers. I actually went away for weekends and generally didn’t let it stop me getting on with my life. I didn’t work and don’t think I could have.
I painted my nails with dark nail polish and didn’t lose any nails, it was amazing how many ladies were on chemo unit with black nails.
On the hair front my husband shaved mine off the weekend before Xmas amidst a range of emotions. I had a blonde wig and a brunette wig so had some fun with those! I now have a full,thick head of hair been trimmed 3 times and has been four different colours!
You have every right to feel unsure and even scared but you will get through it.Just focus on doing what is good for you and listen to your body. Let other people ‘fuss’ over you and tell them how you feel. I found talking about how I felt helped.
I will be thinking about you and please feel free to PM me at anytime.
Lots of love
Brenda xxx
Hi
I hated every minute of taxotere but i am a big wuss and i got through it. First 4 days and last 4 days were fine it was the ones in between. I will say invest in hot water bottle or those microwave pads you can get - they are brilliant for the muscle aches.
Oh and Coca cola - I am not a great drinker of this stuff, once every ten years but found when taste buds go, for same reason it tastes fine. You are supposed to drink a lot of water but i found it difficult because of taste.
I have done the dark nail varnish but didnt start until second round of tax. I have lost two toe nails but i didnt even feel it and two finger nails but only down to middle. They are still very fragile but i am keeping them covered in various hues of black (metallic blue/black at moment)
I didnt suffer any mouth problems apart from taste so it just goes to show we are all different. I didnt take any pain killers, not because i am a big brave girly but because i hate being constipated and the fear of that stopped me. Tax does play games with your bowels i am afraid, or it did with mine.
Good luck, you will get through it, but there is nothing pleasant about breast cancer unfortunately.
All the best
Linda
Last week i had my 3rd round with T…
I do drink a at least 2 liters spring water daily,
healthy food, lots of veggies and fruits and yoghurt.
I lost my hair around the 3rd week.
No real nausea except when the weather was very hot
and i managed to get over with kytril, lots of steroid
munchies, no SE with nails or skin.
Mouth problems , yes but not serious ones, i gargle with salt and baking soda : great help.
When i have body aches i try to avoid pain killers so liver and kidneys will not be overloaded with drugs, if pain is to persistent i take advil. I take also natural sleeping pills .
Severe constipation the first week, than gradually it goes done,i use magnesie calcinée, it helps also.
My blood counts were ok all the way untill now
And i believe that beta glucans and grape seed extracts its helping me a lot.
After my 4th treatment if everything continues like this i will take some sea side vacation …
With all my best wishes for everbody in this journey,
love and take care from Istanbul
Seda
hi there, i just want to thank you all so much for your replies. They give me hope that maybe it wont be as bad as i fear. I will be saving all your suggestions for the side affects and visiting my local health shop. I know other ladies on here will also be greatful for you thoughts and advice.
Please continue to post your experiance of Tax, i am sure it will be a well read thread.
Take care all of you, luv Pauline xxx
thanks for yr comments ladies! I am another one about to join Pauline on tax, and am worried about what it will bring, we have both got through 3 fec with varying SE.
please keep posting with advice love debs xxxx
Hi all I’m starting tax on11th aug to a bit worried didn’t have be time on fec so any tips be gd but I no we all diff time soon go tc everyone xx
hi
thanks pauline for starting this thread and to all you lovely ladies for your advice and ideas to try, im willing to try anything as due to start tax friday love julie m xxxx
Hi Ladies
Tax may not be pleasant but is do able and as Bahons says they won’t give you it unless they think you can cope with it.
I had 3 tax after 3 Fec and finished March 2008.
I worked 15- 22 hours a week flexibly through FEC doing a mixture of lecturing and office work over three days per week. Had expected to continue the same through Tax. Tiredness started earlier in cycle than FEC and spent day 4-5 taking frequent sleeps. Steady improvement after that.Renegotiated work :- one five hour office day per week remaining 15-20 hours worked extremely flexibly (some at home) with one weeks holiday in second cycle and two weeks in 3rd cycle. Was still extremely tired at work when started rads in April and needed some time off (about two weeks). Think that if I had to do it again would probably go off. At the time it seemed a good coping strategy
Found the nausea was less than FEC and even managed to reduce the grandisitron (and hence the constipation ) last cycle.
Was bone aching tired and effects cumulative but did manage to keep going out most days with naps when tired.
Aches and pains better if I kept mobile and helped by a walk round the block. Did look somewhat arthritic as I started but loosened up as I walked. Used very little painkillers.
Very strange sense of taste and suddenly hated chocolate. Did find it difficult to work out what I wanted to eat but managed better with fruit and veg than meat and carbs.
Difficulties with thrush but had very supportive GP practice who would give telephone consultations , write relevant prescriptions on suggestions from Chemo help line and my chemist would pick the prescriptions up and dispense / deliver. It’s worth sussing that out with practice / chemist before you need it. Otherwise sort out a chemo friend (a bit like a flu friend) to pick up prescriptions.
Advised to avoid bread/ rice while mouth/ gullet sore as it would make swallowing more difficult.
Used biotene dry mouth products on advice of dentist (gel is available on prescription ) which helped get mouth symptoms under control.
First cycle got an infection (managed at home not hospital) .Next two cycles given pelgrastin to increase bone marrow production and apart from two days of bone pain felt much better (and didn’t get an infection)
Fluid retention (feet, hands, legs ) increased as the treatments continued. Avoided diuretics using natural diuretics (peppermint tea, celery etc)
Major problem was peripheral neuropathy both feet and hands. Found the loss of sensation , grip etc difficult (but after I dropped a couple of plates got me out of the washing up!!). Have only recently discovered that the peripheral neuropathy also can affect the nerve supply to small muscles in feet and hands.This explains the difficulties I experienced typing and walking. Found using gloves with pull over mitten tops helped with the hands as they got worse if they got cold (it was the middle of winter) and orthotic insoles (to support the fallen arches)in wide shoes/ trainers with thick cushioned soles helped.( If you are trying to find shoes to fit your swollen feet get someone to draw round your feet whilst you are standing up and take the template with you when buying shoes, saves a lot of frustration) Advised to treat my feet like diabetic feet using urea based cream to prevent skin breakdown. Found I was entitled to free chiropody care because of the peripheral neuropathy.
overall not pleasant but as Bahons says there is help with the side effects. When I arrived for my second Tax the chemo nurses spent time giving me plentiful advice and support which was helped as I also saw them the next day when I went back in for my injection. Kept reminding myself if I was feeling rotten then the stray cancer cells must be feeling bad too.
Be kind to yourself through the treatment and plan little treats. Found having massage at the local cancer care centre helped.
Crispy
I’ll be very brief.
Did 3 x FEC & 3 x Tax which I finished end of Jan this year. I was so scared of the Tax I can’t tell you. I used cold cap throughout all my treatment. When I sat down for my first Tax the Chemo Nurse said ‘we wont bother with the cap any more then’, to which I replied ‘yes we bloody will’!!! I kept about 60% of my hair and just wore a band round my head which covered the thin patch.
I gained weight from the steoids, which are higher in dosage with TAX than FEC but other than that I was fine…bit of bone ache and very tired. I worked through FEC but not TAX as I work for the NHS and didn’t want to be around infection in mid-winter when my immune system was rock bottom.
All I will say is… Don’t believe the hype…be your own judge and good luck to you all.
Hi everyone
I start TAX this friday and its been very useful reading all your comments, I feel abit less scared about it now so many thanks
Sally xx
Hi ladies
I recently completed 3 x FEC and 3 x Tax and, in common with several others who have responded, I found Tax far more tiring than FEC throughout each cycle. Other than that, the only SE’s that gave me problems were digestive ones.
The anti-sickness meds gave me constipation for a couple of days, then diarrhoea from the Tax itself would follow immediately after and continue for several days. Not a nice combination…
By the 3rd cycle I had learned to keep glycerin suppositories handy to deal with the first problem. For the other one, starting the day after treatment, I switched to a very low fibre diet, (rice crispies for brekkie, white bread/white rice/white pasta, only very well cooked vegetables etc - in other words, the kind of thing I normally avoid like the plague!), the idea being to avoid any irritation to the gut lining. In addition, I used immodium to control the symptoms a couple of times eg when I had to go out. By the way - some Oncs automatically prescribe this for their Tax patients, others are reluctant in case it masks an infection causing diarrhoea.
So keep an open mind, as it might not be too bad - and have the appropriate remedies in the bathroom cabinet.
Rosie x
just wanted to thank all you kind ladies that spent time replying to my question, i know it helped me and a lot of other ladies on here. I hope people will continue to share any experiances they have of tax. All you ladies starting tax could leave us a daily blog on here. I know there will be a lot of ladies interested in that.
Good luck to all the ladies starting tax this week, i will be joining you next week.
Luv Pauline xxx
I had 4 x ac, 4 x tax last summer (final tax last oct) and was one of the “unlucky ones” as i managed to get every tax side effect going… apart from being allergic and passing out when they give it to you…
For me the worst thing was the breathlessness… it got progressively worse over the 4 cycles and i am still having some now… i’ve had scans to check for secondaries etc but the feeling is that the tax has scarred my lungs - hopefully it will improve over the next year or so… I’ve also developed problems with my ears… they feel as if they are permantly blocked… a bit like how it feels if you have been on a plane or swimming under water… That is a 24/7 thing and again i’ve been told it might get better in a year or so - or i might be stuck with it… I also seem to have some tinnitus - don’t notice it too much in the day but more noticable in a quiet room at night trying to sleep…
Having said all that i had to have the tax as i have IBC and basically it was chemo or die… and luckily my chemo shrank my tumour from 5.5cm at diagnosis to just a few cells by the time of my op… Just hope i never have to have anymore in the future…
Theresa
Thanks theresa, it is vital that people are honest on here and we need to know both sides of the story, thank you for that. Funny i have suffered a bit with my ears on fec, ringing in ears so probably going to be a problem for me on tax, for warned is forarmed as they say.Hopefully your side affects will improve with time.
Thanks again, luv Pauline xx
Hello Pauline, i found Taxotere alot easier to cope with than the terrible FEC ! BUT it has left me and many others permanently bald.
I had 4xtaxotere after 4x fec in 2007.My worst side effects were extreme fatigue,extreme breathlessness,diarrhoea [which made me very sore] and peripheral neuropathy which has improved a bit but is still very much there after 2 and a half years.The other se’s gradually improved when treatment ended but I have never felt as fit as I did before chemo.I too am glad to have had tax as I am triple negative so there,s not much on offer if it comes back.
Love Valxx