Hi
Would be glad to hear of anyone having/about to have docetaxol. Found out on Monday that, just short of four years since primary diagnosis, I now have mets in liver, lungs, bones and skin. Starting docetaxol and Herceptin on Monday. Previously had CAF chemotherapy. Sounds as though side effects are similar though I may have less nausea than with CAF.
Sorry to have to join you ladies but great to know I can tap into a wealth of expertise and support on these forums.
Twinmummy
Hi Twinmummy
Welcome to the club no one wanted to join – so sorry to hear about your extensive mets, but it sounds like your onc has a good plan of action for you, which is something that will give you a bit more control and a lot more hope.
I’ve been living with bone & liver mets for over six years – haven’t had that chemo, but I’m sure others here will be along to share their experiences with you soon.
Please remember that we’re all here to support each other, and a lot of us have at least an “A-level-equivalent” in living with secondary BC, so will be able to answer your questions and point you towards more info. Also, you might want to speak to someone on BCC’s helpline, number at the top of each page here.
Regards, Marilyn x
Hi twinmummy. I finished tax a month ago. It can be tough - but sickness isn’t usually an issue. Mouth problems were very trying, and it can just knock you for six. I didn’t get the aches and pains that many get, although I have got some now which I suspect are from the Tax. A friend with extensive cervical cancer mets has just finished tax - she had the weekly lower dose. Her 3cm liver tumour has gone and her lymph nodes are now clear as well! She is currently NED! It is strong stuff but it works. Good luck.
Hiya
I’m due to have my last TAX on Wednesday. I personally found it quite tough but doable. My main side effects were flu like aches and pains in joints and a very horrible sore coated tongue and mouth and some tiredness. I didn’t suffer with any nausea thankfully.
Hope this helps and good luck
Krissy x
Hey Twinmummy
Glad they’re getting your treatment underway!
I had 4 Tax for my primary & had my last one back in February. I was prescribed gabapentin for the bone pain it can cause & had to have neulasta injections to try to keep my neuts up, but I found it not too bad overall.
I had the three weekly cycle (I’ve read that the weekly cycle is kinder) & was kinda laid low for 2 days with fatigue around the 4 day mark, but had absolutely no nausea at all with the Tax…had horrendous nausea with FEC!
Good Luck!..I have everything crossed that it blasts the wee nasties for you!
Let me know how you get on
Hxx
Hi Twinmummy
I had 6 x 3 weekly cycles of docetaxol last year with herceptin for mets to my lungs and mediastinal space.
I think I was quite lucky in that the side effects weren’t too bad. I always developed top to toe flu like aches and pains abount 2 to 3 days after getting the drug which usually lasted about 36 hours and then gradually wore off. I alternated between paracetamols and ibuprofen during this period which kept it manageable. I had no sickness at all but did tend to get a sore mouth around the middle of the cycle. The hospital gave me a mouth wash which certainly helped with the sore mouth. My nails gradually deteriated over the 6 cycles and were quite a mess by the end, some were coming off and then they got infected. I did get progressively more tired during the cycles but again it was manageable.
The good news is that this chemo was extremely effective on my mets. My lung mets were no longer visible, my chest lymph nodes were back to normal size and my large met sitting in the mediastinal space between my lungs had shrank from the size of an orange to the size of a plum.
I really hope this chemo is as effective for you with minimal side effects.
Take care
Paula XXX
I kept my nails painted dark all through my time on tax. It took a bit of getting used to as I’m not really a painted nails kinda girl, but it was definately worth it.
My nails became thicker & very hard towards the end of chemo & they still have ridges on them now, but I haven’t lost any nails & they don’t look too bad even as the thicker nail is growing out.
Hxx
Thank you all so much for responding, and so quickly. That really helps me to know what to expect. Fatigue wasn’t much of an issue with CAF and I don’t remember too many aches or pains but the nausea and revolting taste in my mouth I do remember being the worst.
Thanks for the tip on painting nails dark Hayz - that sounds a good plan. Paula, great to hear what effect the Tax has had on you too since it sounds as though we have mets in similar areas. I haven’t phoned the Helpline before Marilyn and think that would be a good plan.
Thank you again all of you for replying - I’ll certainly let you know how I’m getting on. Kids at football this morning so enjoying a bit of peace and quiet. The sun is out and there’s a beautiful blue sky so will take myself out there with a decent cup of coffee.
Lots of love to you all xxxx
Just wanted to wish you all the best with your chemo Twinmummy.
A friend had this chemo and I made up a bag of (hopefully) helpful things for her after reading other’s experience with this chemo. I did put in some gossipy magazines and nice little foodie treats but also some black cherry nail varnish and some crystallised ginger, bite size pieces, you can probably get exactly the same from Holland and Barrett…the nail varnish helped and the ginger was really helpful for nausea and the loss of taste, coaty tongue feeling you can sometimes get on this chemo. Good Luck and I hope you have some great results from the docetaxol…xx
Hi Twinmummy
Back in March I was told I had an 80% chance that I had secondary breast cancer in my lungs and following a lung biopsy it was confirmed two weeks ago that it is secondary. I also start docetaxol this week, Tuesday, 6 cycles every 3 weeks. I had 3 x FEC and 3 x Tax the first time round 3 years ago. As I read the ladies above side effects its all coming back to me although a bit like child birth I can’t recall it all exactly although I did have it a bit easier than some. Still dreading it.
Hope you got on ok today and that the Tax does its best for both of us.
Let us know how you get on and we can compare notes.
Carolyn x
Thanks Belinda for the good wishes. Surprisingly so far not got the nasty taste or nausea but very early days yet. That goodie basket sounds fab. My colleagues at work bless them have given me a basket with 6 treats in for me to open just before or after each session.
So sorry to hear about your lung mets Carolyn. Yes, lets keep each other posted on how we getting on. I went to the hosp yesterday and had the herceptin and was told previously I would also have the Tax the same day but they said as this was my first cycle I had to come back to have the tax today so they could monitor for any allergic reaction to either drug more easily.
So far just feeling remarkably tired but when I to to bed am still awake a lot thanks to the dexamethasone even though I take the last lot very early in the afternoon.
It all still feels so very unreal. Love to all xxx
Hi Twinmummy
I was diagnosed with mets to my lung and mediastinal space like Paula. I was started on Carboplatin (drugs trial) which started off well but then my symptoms came back and tumours had started to grow again so now I’ve been changed to Docetaxel. I just had my second dose yesterday. I didn’t have any nausea or sickness but had a terrible woolly mouth and food tasted terrible. At my review prior to my second treatment the doctor said I had a oral thrush infection which could be causing the mouth problems so I am now on medication and hoping I won’t get the same problems this time. I also had some mouth ulcers so used mouth wash which helped. I am also wearing dark nail varnish and my nails appear quite strong at the moment. I have also had some headaches but I have lived with them for years but since going through an early menopause due to my original chemo haven’t really suffered from them. I didn’t really have too many aches and pains but I have been taking co-codamol and oramorph regularly due to breathing difficulties so may not really have noticed them anyway. What I have found is that I was really fatigued particularly towards the end of the cycle. The doctor thinks that this may be due to having stopped my steroids which I had been on for almost a month coupled with anemia. I have to have a blood transfusion on Friday so hopefully this will help. Overall I would say that the side effects were less aggressive that the ECMF which I had before. Good luck with the treatment. Please keep us updated in how you are getting on.
Paula
I am really pleased to hear of your positive response to the chemo we have secondaries in the same place. I hope mine will be as successful. Do you mind if I ask you what type of cancer you have and when were you diagnosed with secondaries? Mine is triple negative and is quite aggressive and have been told that it will keep coming back.
Sending love and best wishes to everyone
Jennie x
Hi Jennie, no, of course I don’t mind you asking about my breast cancer.
I was diagnosed with primary BC in June 2003 which was ER+/PR+/HER2+. I had the usual treatment of WLE, chemo (ECMF) and 25 rads before getting on with my life.
Then 5 years later in Nov 2008 I was diagnosed with secondaries to my lungs, mediastinal space and chest lymph nodes. I had my right lung drained and then had 6 cycles of docetaxol which were extremely effective, in fact I could tell it was working after a couple of cycles, even before they scanned me, as my symptoms were steadily decreasing. I have continued with Herceptin and Letrozole since then and fortunately my chest disease has been stable ever since.
Unfortunately neither docetaxol or herceptin get through the blood brain barrier and I was diagnosed with a single brain met in March 2010. I have recently had surgery and 10 sessions of WBR, but no more chemo for now. Strangely, the brain met was not hormone sensitive at all, although still her2 positive.
I really wish you well with your treatment and hope that you have as good a response as I did. Hopefully you will also have a bit more energy once you have had your blood transfusion.
Take care
Paula X
Day 6 post first Tax and so far its manageable. No nausea thank goodness but yes, know what you all mean about the nasty coated tongue! Am getting through a lot of mouthwash… My main problem though is very sore feet (am taking paracetamol and ibuprofen to ease this) and tiredess and an aching back. Anyone else get the sore feet problem? Got a new wig on Wednesday which am really pleased with.
Take care all and enjoy the lovely weather.
Twinmummy x
I’m sorry to jump in on this, my Mum has been told she will need weekly Taxol as the oral Vinorelbine & Xeloda did not work.
Has anyone seen positive shrinkage/reduction and better control on this? Has anyone been on this for more than 6 months?
Thanks for your help, i don’t know where else to ask.
Hi Gingerbear, I’m on weekly taxol at the moment. I’ve had 11 weeks so far out of 18. I’ve had one scan which didn’t have the extreme result that I wanted. However, there has been some shrinkage in my liver tumours and I am hoping that by the end of the 18 weeks there’ll be a lot more. One of the chemo nurses told me that this quite often happens with tax. I do feel a great deal better than when I started the treatment. The pain in my liver has gone and the side effects are manageable.
Twinmummy glad to hear you are coping well so far. I have the aching back and crappy mouth. I also wear the dark nail varnish as they are in a shocking state (just my hands though, my toe nails and feet are fine) Weird! I also get extreme indigestion, but I’ve started taking Gaviscon as well as the Lanzoparazole and also bicarb of soda in water. This really helps.
Anyway, hope you are all ok today, take care, lotsa love, Dianne x x
Hi Twinmummy
In my previous post I said we should compare notes and I’ve not been on - I do apologise.
I found this time around the tax isn’t as bad although worse may be down the line as I get each cycle but anyway at the moment I’m ok. I’m more tired than usual (takes ages to get up and about and then mid afternoon I get really tired) and like you have the horrible coasted tongue which dulls the taste of a lot of food although last time everything tasted peculiar. Like Jodie1 I’ve also been suffering from indigestion. I’ve not had sore feet but I have read on the forums about others who have suffered from sore feet. My hair is still hanging in there although that’s early days too - I’ve also got my new wig which is ready and waiting :-).
So fingers crossed the next cycle will not be much different.
Take care.
Carolyn x
Hi Carolyn, Glad to hear you aren’t suffering too badly with the symptoms. Are you having the treatment weekly like me? It’s a damn nuisance having to go every week, but I haven’t lost my hair. The onc said if I have it monthly then I will lose it, so we went for the weekly instead. I’m finding that taking gaviscon after every meal and before bed really helps the indigestion. If it persists then I take the bicarb in water in between times. I’ve found that the symptoms generally have not increased as I thought they would. So I’ll be keeping my fingers crossed for you that everything works well.
Hope everyone is feeling well today and that you all have a good day. Take care, lotsa love, Dianne x x x
Hi Missy and everyone
Good to hear from you all and how you are coping with the docetaxol. I really dipped the second week - very tired, came out in rash, nosebleeds and went into hospital to get checked out. Was neutropenic and given a short course of antibiotics, thankfully to take at home and didn’t have to stay in. Feeling lots better now in readiness for next lot tomorrow. No indigestion for me - sore feet really the main problem although that’s eased now.
Good news is that saw onc on Friday who was pleased to see that skin mets were responding after 1st lot so hopeful by end of course there will be some good shrinkage. Hair was falling out in handfuls so have had it all shaved off now but the wig looks great and have some lovely scarves.
Have a good week all.
xx
Hi Twinmummy, Glad to see you are feeling better and that your feet aren’t as sore. Hopefully once your body adjusts to the drug, the symptoms won’t be as severe, that’s what I found anyway. Great to see that your skin mets are responding so quickly. Sorry to sound thick, but what does neutropenic mean??? Good luck for today with your second treatment. It’s my week off, yippee, got to see the onc on Friday, but don’t know what he can tell me really apart from what the tumour markers look like.
Hope everyone else is well today and that you’ve all had a good weekend. Take care, lotsa love to all. Dianne x x x