Taxotere/Docetaxal - I WANT TO MAKE SOMETHING VERY CLEAR

I just want to make it very clear to other people here about Taxotere/Docetaxal because I’m concerned that reading some of the stuff on here is scaring the bejesus out of people.

There have been a FEW of us on here who have had extreme reactions to Taxotere and yes, have had some horrific things happen to them as a result, me included.

HOWEVER please people do keep this is perspective. We are a handful of people who have had really bad times, the majority have manageable SEs and haven’t been in agony. It’s really really important to remember this when reading any posts, we all like to know worse case scenario of course, but the vast majority are managing ok, theres only a unlucky few who are having some horror stories, but we must also feel that we can share these obviously.

Don’t let it put you off trying for gods sake! Taxotere is very highly regarded in tackling an killing cells, very very good.

I’d also tell anyone who does start suffering with SEs to get it nipped in the bud asap, don’t do what I’ve done in the past and think it’ll go away, it tends to get worse before it gets better and it’s not worth suffering.

By the way, I lost my hair on EC despite cold cap. Shaved it all off Week 3 of 1st EC.
It’s growing back on Tax, very slowly and unevenly but it’s growing back.

I have not lost any of my nails, the nails on my hands have been sore but so far unaffected, I’ve used dark blue nail polish.
I’ve had some blackening of both my big toe nails but not all, I never used nail polish on them, just keep them hidden.

I have kept my eyebrows and lashes after 5 out of 6 sessions.

I’ve always been OK by Week 3 - just tired but NO SEs and chemo mouth gone by then.

So it’s not ALL bad.

Well said, Kat.

I’m on weekly Taxol (another of the taxanes; very similar to Taxotere).
I get one day a week of Tax Trots but they are resolvable with Imodium, taken with permission from the Oncy nurse. I also get a bit achy but have managed without extra painkillers.

My fingernails dried up and got flaky with 3 sessions of EC and they are no worse on Taxol. I just keep them short and use handcream. There is no nausea or sickness and my hair is also growing back.

Taxanes for me are a doddle compared to EC.

I said to my BCN “How the hell do people do this EVERY WEEK” after my first tax where I had the crawling around on the floor unable to walk thing and she said “it’s a weaker mix when you have it weekly, when you have it 3 weekly its all in one go”.

Apparently?

Still, hate the idea of having to do that weekly and really feel for people doing that. xxx

I’ve done both, and found tax hard, but it’s all do able. We have different pain threshholds and the se’s vary. No speak, no help.
In all fairness, if it helps. Many of you have had surgery. I haven’t. I feel a far worse time ahead for me, as that’s something I really dread!

Oh, and it was me that threw a tantrum over a thread where someone said they thought they were dying from se’s.
I think i’d rather give chemo a shot, than die from cancer without trying to get better. I owe myself that.

Elttiks I have just had my last of 6 tax and yes its been hard especially the latter ones, I only had tax so can’t compare with others,it is doable and is supposed to be the gold standard treatment. I also have surgery next and to be honest I am having some issues about it, I think it’s because I have had 5 months to think about it unlike most who have it as a first treatment, I have booked in for some counceling before to talk things through, I know it’s necessary to remove the primary but it’s still a part of me I have to say goodbye to.I love my lady lumps !!!
And I do agree with El Kat, there are some horror stories on here from a few but I think the ladies who don’t have serious problems don’t post on here, so although I have had a lot of support I have learned to sift out the info which is useful to me.
Jean.

Just to reinforce Kat’s excellent point, I’ve been on FEC-T and just had my last T. I’m one of the ones who’s had a fairly easy time.

First cycle of Tax, it was only the steroid dose being too high for me that gave me any probs - didn’t sleep hardly at all for a week and needed a few days to recover after that.

Dose nearly halved second time and much better. Had the Tax on a Tues, felt great on the Weds & Thurs (just the taste buds went) - just needed a nap in the afternoon. Friday had the sore throat, white tongue, aches (some of which were down to Neulasta) and tiredness. That lasted over the weekend, recovered on Monday, onc appt on Tues, back at work on Weds. No trots but v bad and smelly wind!

Had my last Tax this Tues and I’ve been at work for a few hours today (just covering phones and doing mindless stuff cos chemo brain is def in place).

You don’t hear from us, cos we are boring!

Dx

That is totally true (just to get things into perspective!) that many people without serious problems don’t post on here. On my first chemo day I felt like I did on my first day of school and was really scared. I met a 39-year old lady who has 2 beautiful children who told me she’d had minimal side effects and had worked all the way through FEC and TAX (commuting into London from Brighton). She had felt a bit queasy with FEC and therefore had prefered TAX where her symptoms were slight fluey aches in her joints, tiredness and a bit of an upset stomach, but luckily that timed quite nicely over the weekend, so she was back into work the following week. She stays away from forums as said she had posted at the beginning, but actually found some of the stuff upsetting and preferred to find things out for herself!!

On the Young Women’d Forum I also met lots of ladies who were sailing through chemo. One had had chemo the day before the forum. And again, many worked all the way through their chemo. Again, many stayed away from the forums as their heads were in a very good place, they felt they were getting all of the information they needed relevant to them from their BCNs and oncs and they weren’t suffering bad SEs.

I think the forum is FAB and invaluable for me. Also, I don’t mind hearing about the awful stories as I almost like to set myself up for the worst and then just be pleasantly surprised if it doesn’t happen!! I start Taxol in 2 weeks and am stocking up on loo paper and immodium!! :slight_smile: If I don’t need it? Then great!! Oh, am also getting my nails “gelled”! I went for tea with the lady I met at the hospital and her nails looked great. Have never stepped inside a nail bar before. Hoping I’m not going to come out with 10" talons! Probably wont help with the bum-wiping!

x

Kat says: I said to my BCN “How the hell do people do this EVERY WEEK” after my first tax where I had the crawling around on the floor unable to walk thing and she said “it’s a weaker mix when you have it weekly, when you have it 3 weekly its all in one go”.

The weekly is a 40% of the 3-weekly, not a third, so you actually get more overall. It gives you an extra 5% survival chance if your odds, like mine, are not as high as some people’s.

elttiks says: “We have different pain threshholds”.

Exactly. I have fibromyalgia, so I am used to living with constant muscle/bone pain and swollen joints. So I said that I don’t take any “extra” painkillers; just my daily dose that deals with neuropathic pain that I’d take anyway. I feel the same pain as everyone else feels, I’m just used to always hurting and tolerating it. And I’m not much worse on tax than without it.

Kat is absolutely right. It is so important to remember that it’s not the same for everyone as there are so many subtle things that affect how each and every one of us reacts to a certain drug.

If I’d read something mirroring what I went through before I started chemo I would have been petrified but I am kind of the ‘exception that proves the rule’ as the majority of people don’t end up in intensive care or having some of the awful SEs folks have been posting about recently.

I looked at it from the perspective of being aware of what *might* happen, rather than the worst case scenario and I think that’s probably the best way to deal with it all if you can. It is so hard to get a balanced view on all of this which is what makes it all so scary.

Sandytoes - make sure that you don’t end up with nails like this! :smiley:

news.bbc.co.uk/1/hi/world/americas/7889890.stm

AGH!

hi, just felt i had to make a comment about TAX side effects . i had my first TAX 1 week ago and felt like i had been hit by a bus until last night, no they are not nice s/e’s but feel the worse s/e’s are over with now , I’m glad we are not all the same and some don’t have any side effects for those that suffer V bad i feel for them but they will pass ( cyber hug’s)
< thinking at the end of the day what choice do some of us have ? do we just lay back and let it win , hell no !
hugs Susan
" Take one day at a time "

Oh Nymeria -Lee Redmond- with the world’s longest finger nails- must have employed her own personal attendant for special wiping duties!!

Ha! Not sure this reassurance thread is very reassuring! Oh well! We all need to get through it and will all have very different SEs and will just have to wait and see how they affect us individually!!

I find the forum invaluble when I’m concerned or when I’ve got bad SEs and want a whinge at people who get it :slight_smile:

I dont think being aware of what bad things can happen will MAKE them happen though :smiley: And I dont think it matters how “positive” you’re feeling in yourself either! I was utterly positive I wouldn’t have problems this time as I wasn’t going to be using Filgrastim and I also was convinced I was feeling fairly great and upbeat before all this happened with the cramping etc.

Also, I have a great pain threshold, I’ve been through some pretty nasty stuff in my life which is personal, medical people have often said to me that I must have a high threshold. Some people are just unlucky.

Either way though it doesn’t make you soft!

I was terrified when they said I’d to have chemo because i saw what it did to my Mum who since died of bowel cancer. I’ve not been as bad as her - she had secondaries as well. She was being sick all the time, I haven’t been sick once.

There are a LOT of people who just get tiredness, itself a real pain in the bum but not bad if you’re not trying to carry on as normal - its frustrating as hell though.

What I hate in all this is the lack of control and the feeling of vulnerability I have, I’m normally so controlled, in charge, powerhouse of a woman who is the breadwinner, queen bee etc and I take great pride in my independence.
This has been tough.

Ha Ha - I did wonder whether she employed a ‘special helper!’ Just doesn’t bear thinking about!

I got a truly awful stomach bug a few weeks after chemo and was told that things like codydramol and cocodomol are very good for the pain and also because they slow down the gut and help with cramps. That said, immodium was my very bestest of friends as in the end it was the only thing that really worked.

I had problems with mucositis all the way through from top to bottom with docetaxel but not with constipation. A patient on the same regimen as me sailed through without hardly any problems at all. I was so jealous! :slight_smile:

Me too Kat. I hate the fact that my life is revolving around it. I’ve just had to cancel the one thing I had to look forward to in the next couple of weeks before my next chemo as they’d scheduled my first Herceptin for then. And I’m not sure how I’m going to get a new job with at least 3 recon ops and Herceptin every 3 weeks next year! BUT I keep telling myself that as long as they throw everything at me to try and cure me, I’ll take it. Bring it on! I’m actually panicking that my side effects have been so mild and mainly due to the steroids that the chemo isn’t working. Remind me of that when I’m complaining that the TAX truck has hit in 2 weeks time!! :slight_smile: x

" What I hate in all this is the lack of control and the feeling of vulnerability I have, I’m normally so controlled, in charge, powerhouse of a woman who is the breadwinner, queen bee etc and I take great pride in my independence.
This has been tough. "

Yep, that was the toughest part for me a lot of the time too! I am used to being the person that everyone else relies on and the shoulder that everyone cries on and I hated feeling weak and vulnerable!

But we will be even tougher and stronger once we’re through the most active bits of the treatment.

I hope! That’s the plan anyway! I’ve already got a different attitude to life - which is why I’m so p*ssed off that my nice plans have now been scuppered by more cancer treatment!!