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Top Tips for Taxol?

32 REPLIES 32
peacock
Member

Re: Top Tips for Taxol?

Hello Bahons

Thanks for the tip re the bandeaux. I do have a wig, which is hot like you say and luckily my sister sent me 4 bandanas and 4 muff type things which are really comfortable. I'll have a look in the shops, are they down the scarf aisles?

I've had a rotten week, felt awful been in bed most days, found out today I have an infection in the wound - my breast is hot, painful, red and weeping! Yuk. I'm now on antibiotics for 10 days and have to have the nurse come home to change the dressing every day.

I can't understand why a tiny scar that has been closed for a while could get an infection? Still on the plus side AB might sort out the constipation problem!

Bye for now

xxx

Guest user
Not applicable

Re: Top Tips for Taxol?

Hi Peacock

Hope you are feeling better than you were and that your wound has settled down a bit.

I don't know where you are in the hair situation, but I've just discovered the 'bandeaux' that they seem to sell in supermarkets and some little shops, too. The bigger ones cover my head completely and don't slip about like some headscarves. (I didn't want a wig - it's just too hot for one here most of the time). Got one yesterday for 3 euros!!!! I'll be back for more!

X

S

peacock
Member

Re: Top Tips for Taxol?

Hi Bahons
Glad you got the PC fixed.
I have felt awful today, really fatigued, just been in bed all day dozing and trying to lay flat to relieve this aching in my ribs. The weeping from the wound started again today, it just started and soaked the dressing I had plus nightshirt. Strange but it happened at exactly the same time as yesterday - how odd is that.
Anyway off for some more sleep, speak soon
xx
PS I also have been having nosebleeds so it must be a common SE

Guest user
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Re: Top Tips for Taxol?

Hi Janneth

Good to know the nosebleeds are common. You are right, the Taxotere must thin everything down - even the mucous membrane in our noses!

Hi Peacock

I've only been for PET scans in Toulouse - at the Clinique Pasteur, rue Lombez, so have only experienced the one hospital and then as an outpatient (oh, and the genuinely scary peripherique!) - it was fine, no complaints at all. It's fairly easy to find and there is a public car park next door.

Hope you're not feeling too rough.

X

S

Guest user
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Re: Top Tips for Taxol?

Hi,
the bruising thing does seem to be related to the taxotere, I think. I was black and blue all through it and for about 18 months afterwards. In fact, i bumped my knee during the chemo and I still have the bruise almost two years later. Nose bleeds ditto, sometimes just sitting in front of TV - maybe it's too exciting for me these days. Anyway, maybe the taxotere just thins out our veins walls or something. Hope it sticks to places we can see. This bleeding thing is indeed 'bizarre'.
X
J

Guest user
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Re: Top Tips for Taxol?

Hi Peacock

Thanks for replying when you feel so grotty.

Have tracked down a computer guy (says he'll be here in 5 mins to take it away!) We've only been here about a year or so ourselves. Oops! He's here. Will talk about Toulouse and hospitals when it comes back!

Sorry to hear about your bad trip tound the supermarket. Sounds like anap is exactly what you need.

IHaven't had any probs with bruising, although I've been getting nosebleeds for the first time in my life.

Better sign off

Take care

X

S

peacock
Member

Re: Top Tips for Taxol?

Hi girls

Jan that is good news, no more chemo! Good luck with the pre op and hope that you get a date quickly for the mastectomy. Will you be having rads after?

Bahons, I'm not doing so good today, despite all that water! I have felt really tired, didn't sleep at all well and in fact was working on the PC at 4 this morning. It's my work so I have to do it when I can. I had to do a mad dash to the dr as my wound from the minor surgery decided to start bleeding quite heavily as I was walking around Champion. I ended up with this cardi and T shirt bload soaked most embarrassed. It's been closed up now (the scar) for a good week so I've been leaving it uncovered. Anyway by the time I got to the Dr it had stopped, she couldn't understand it and just said "how bizarre". Crazy. So now to be on the safe side its back to being dressed, it feels achey today too, like my ribs. Anyway, perhaps chemo did something yesterday - do you find you bruise quite badly at the mo? My doctor mentioned that if I want I can have the mastectomy at Toulouse as she thinks it will be better there, they are supposed to be the best cancer hospital in France. Have you had any reports or experiences of Toulouse?

About the computer, well I don't know anyone here unfortunately, we've only been here for 8 months and haven't really gotten to meet people. I usually manage to sort things out myself but it depends on the problem, if you want to email or PM me with your problem I am happy to try and help if I can? Have you looked at Anglo Info for your region? Or the other regional websites like Complete France, Total France? Just a suggestion if you've already tried, sorry I can't think of anything further.

Oh well, I think its time for a nap zzzzzzz

Bye and hope all goes well for you all

xxx

Guest user
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Re: Top Tips for Taxol?

Hi Peacock - know what you mean about the good days getting fewer and farther in between!

I think if you have managed to drink 3 litres of water, then you are doing brilliantly. My throat seems to close up shortly after the chemo and I have trouble swallowing anything. How anyone puts on weight with chemo baffles me, I don't have the energy to get up and go to the fridge or even chew for very long!

The thrush is much better now, thanks - until the next time, I suppose. Am definitely going to quiz onc (doesn't look like Hugh Laurie but is highly presentable nevertheless!) about it next week when I go.

Thanks for the encouragement, Sandra. I know there's light at the end of the tunnel - perhaps at the moment I'm facing the wrong way!

Jan - I'm pleased for you - and you might well find that surgery is a breeze after all that chemo.

Peacock, this is nothing to do with anything, but our PC is playing up - do you know of anyone near you who might be prepared to come down to us and look at it? Just a thought! Been through French News, French Connection and the Languedoc website and there's zippo for this area.

All the best to all

X

S

Guest user
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Re: Top Tips for Taxol?

Hi,
Thought I would share my news with you. No more Tax !!!I have had 4xA.C. and 3x Taxotere and had a meeting with the whole team together yesterday and they decided to move on with surgery as soon as poss.

One of the reasons is that I have developed a rash on my affected boob which is worrying them. They have no idea what`s causing it but need to get moving in case it gets worse, so I have my pre op tomorrow!! I will also get a date then..when things start to move they certainly move fast.

I also have used Goth nail lacquer and have had no problems at all with my nails.

Good luck with the rest of your treatment girls .chin up girls, it won`t be for long.

I feel that I have just come out of my comfort zone, bit scary but so want to get on with it!!

Take care,
Love,
Jan x

peacock
Member

Re: Top Tips for Taxol?

Thank you so much Sandra to give us some hope whilst going this awful treatment. I say this as I am in bed at 5 in the morning as I've been awake for over an hour with dreadful heartburn.

Good luck to you and keep the strength up.

xx

Guest user
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Re: Top Tips for Taxol?

hi to everyone
im new to this but having had 3 lots of surgery the last one was a masectomy,8 cycles of chemo including
fec and taxa,i had a pick line put in that was a pain,an mri scan heart echo.ct scan and have just finished
15 days of radiotherapy,the chemo was the worst of all and at times i felt i cant go on i8 had no energy
at all i put on nearly 2 stone in weight and lost my hair,my chemo finished 6 march 08 and the reason im writing this
is becos this mornig while getting ready for work i took a minute and looked in the mirror,i have eye lashes again
and joy oh joy i used my hair dryer for the first time in ages also i have gone down a size in clothes
and i havent been on a diet just slowly getting back to normal,so really what i want to say is keep going its worth it
it may not seem like it now i know how hard it is but you will look back oneday and give yourself a pat on the back
cos you got through it, I DID THIS MORNING
sandra x

peacock
Member

Re: Top Tips for Taxol?

Hi again S
Did the thrush/allergy thing get sorted? I know what you mean about feeling worse each day, I'm beginning to feel that I don't have too many good days now although its nothing major, just a feeling of no energy or enthusiasm . Not feeling too bad at the moment thanks to all the steriods and this time I have drunk litres of water - about 3 I think to keep things flushing.

There is nothing wrong with being a Goth!! The blacker the better I am told. (Nails I mean).

Anyway, off to bed, not to sleep but to laze and watch my fav TV programme which is on later "House". I just love Hugh Laurie,but wish he'd drop the fake American accent, oohh I wish my Onc looked like him!

Bye for now

X

Guest user
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Re: Top Tips for Taxol?

Hi Peacock

Good news about the tumour markers! Although I don't envy you having 8 Taxotere, tho'. I'm honestly beginning to think I feel worse each day, rather than better and my third is less than a fortnight away.

Anyway, I've taken yours and Janneth's advice and bought the darkest nail varnish I can find. Vampish?Ghoulish? Addams Family, eat your heart out. It looks hideous enough to work.

Hope you are putting your feet up now....

X

S

peacock
Member

Re: Top Tips for Taxol?

Thanks Bahons, I haven't asked for a disabled badge either but the hospital told me to ask for one from my GP.

I am pleased, just had my 4th taxotere so halfway through now, (finger nails beginning to ache already) and they've decided to keep me on taxotere for the full 8 courses. My tumour is responding well, my tumour marker is 22 so I think that is a good result? Anyway the doc was very pleased and said tres bien.

I mentioned again about my rib ache, he double checked the liver scan and rib scans and xray and said it is not cancer! He was honest enough to say he doesn't know what is causing it, so I hope it gradually improves.

Good luck with your next Taxotere and hope you recover quickly from your last

xxx

Guest user
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Re: Top Tips for Taxol?

Hi Peacock

I don't mind you asking at all about the disabled badge. No, I don't have one - it's never occurred to me to ask for anything like that. I was actually referring to the free parking at the hospitals. Even tho' I feel rotten, I seem to be able to move around - my bod feels tired, but my brain more so!

Well, I had some minor breast surgery here in Dec 07 and my surgeon was Dr Pasteur of the Polyclinique Montreal (very nice hospital) in Carcassone. He was incredibly neat (took me four days to notice I'd had a Portacath fitted on the other side - though that may say rather more about me) and I was scarcely in any pain. I don't know if they used a new type of anaesthetic, but I felt fighting fit just a few hours after the op. All in all, pretty impressed.

I would say, try not to worry about your ribs - could be muscular from the Taxotere - or are you getting all tensed up for some reason? If they have tested and found nothing to worry about, that is good.

Hope tomorrow goes as well as possible.

X

S

peacock
Member

Re: Top Tips for Taxol?

Forgive me for asking Bahons, do you have a "disabled" badge? You mention free parking and I wondered if that means we can apply for a disabled badge? For a while after chemo it is difficult to walk into shops etc. well for me anyway, as I generally feel so weak once stopping the steroids. Of course you might just be mentioning the free parking at the hospitals in France?

I just wondered if you have had any type of surgery for your BC in France? I will be looking for a good mastectomy surgeon for the end of my chemo around December time, it doesn't seem to matter here does it how far you travel for the best treatment.

I'm just getting myself "prepared" ready for chemo and Onc appointment tomorrow - got my nails painted, and getting my list of questions ready.

I just wish this horrible aching & discomfort in my ribs would go, I've had this now for about 6 weeks and despite tests showing it is only bruising (from what I don't know) it still worries me. I don't think they could do any more tests than I have had done already so its a silly worry - still, suppose that is what life will be like now?

xxx

Guest user
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Re: Top Tips for Taxol?

Hi Kinden - thanks for joining in - I thought I'd read somewhere that Taxotere was 'kinder' than FEC, but it's frying pan and fire for me. I used to really 'bounce back' after FEC, but I can't do it with Taxotere!

I find I get very depressed and irritable, too. Anyone else?

Peacock - I've been treated both in the UK and France for bc, and I have to say I've been wowed by it here.

From being told I needed chemo to receiving the first dose took three hours, which nearly took my breath away, literally and metaphorically. Like, you I've appreciated getting scan results instantly - and being in charge of my own medical records. Things like the Portacath and the nurse coming round to the house to take blood have definitely improved my quality of life at this rather dreary time. It's very nice not to have to keep dragging myself to the doctor's for blood or the hospital to have lines flushed. I'm sure it reduces the risk of infection, too. (OH loves the ample, free parking and how quiet the nurses are, especially with those soft soled shoes they all wear!)

Kindensurprise
Member

Re: Top Tips for Taxol?

HI Bahons

Just had to pitch in to say that I loved and completely agree with your analogy re FEC and TAX - being hit by a runaway train, and being dragged along by one. I had 3 FEC and am now day 5 of my 1st TAX and finding it hideous. I have the heart thing too, along, as with everyone else, with a load of other SEs. Thanks for making me feel less alone with it all.

Kinden
x

peacock
Member

Re: Top Tips for Taxol?

Hello Janneth and Bahons,

We are in Aquitaine, but on the border of the Lot and are about 2 hours drive away from Bordeaux. We haven't been there so can't say much about it, except perhaps for the vin rouge! I agree with Bahons, if you are over 65 and have the E121 then you will be ok, if you are of working age and will continue to work for a UK company and paying NI then you need an E106. Apart from that, its either get a job in France (difficult) or pay for private treatment. For what it is worth, I do feel that my treatment since seeing the Onc has been excellent, what do you think Bahons? Of course I've nothing to compare to but test results like xrays, scans etc. you get on the same day. A nurse came to my home this morning to take my bloods ready for chemo on Monday and with our Social Security I am able to get an ambulance taxi to take me to any appointments for treatment (which is paid for). So after reading how some of the girls in the UK have a problem to get to and from their hospitals I think that is definitely a bonus here.

Eyes! Mine are especially worse in the mornings when they have a watery mist over them. It does seem to get better as they day goes on, but generally my eyesight does seem to have deteriorated since starting chemo.

Our weather seems to have turned really wintery in the last week: jumpers, long trousers and radiators on again and its only August.

Good luck to you both, have a nice weekend

xx

Guest user
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Re: Top Tips for Taxol?

Hi there both!

Thanks for yet more info'!

Peacock - the cream they have given me is Dexeryl. It's nice, goes on easily, but don't know if it helps a great deal. I'm also putting on Cyclax aloe vera face and body cream that I get visitors from the UK to bring over.

Re: the ice mittens/slippers. Bird brain here spent 4 hours walking round Caen on chemo feet about 10 days after first chemo, which well and truly mangled them. They were so blistered and swollen that I ended up in a wheelchair for three days. Next chemo they offered to put some mittens on my feet as well, which I gratefully accepted! (I believe the ice mitttens are a French invention). I was a bit apprehensive as I have Raynaud's but it wasn't too bad at all.

Thanks for the tips about nail polish, too, both. I shall get some asap. Is there anything special about the silicone stuff, Peacock? Don't mind paying 12 euros if it does the trick, tho!

I was relieved to hear you both have the pounding heart business - everything I've read says to consult a doctor (I haven't) immediately if you get this - did either of you?

Yes, the weather here (I'm in the Languedoc - we love it) isn't too clever at the moment - I actually have a 'woolly' on! We're not that close to either Bordeaux or Biarritz really, I'm afraid.

Yes, I have eye trouble, too at the moment Janneth. Small print is a no-no! Sorry to hear that the side effects are still giving you trouble, too. Know what you mean about the cellphone - my painful fingernails mean that I just cannot change the loo roll, although as the only woman in the house I doubt that anyone cares except me.

Re: the French Healthcare system - yes, there have been some shakeups and tightening of the rules. It's possible to write pages on the system but I hesitate to say much as I am no expert on it! Bottom line, I think, is that if one of you is over 65, you can obtain an E121 when you leave the UK which faciltates your entry into the French system. I think that if neither of you are over 65, the situation is more complicated and you would need to take specialist advice. Perhaps Peacock knows more?

Bye for now - thanks again, girls!

X

S

Guest user
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Re: Top Tips for Taxol?

Ice slippers! Ice gloves! Yikes, nobody gets those here in Uk.
I think things have moved along a bit re Taxotere since I got mine - before approval I think, when Marsden was testing it.

Are you two girls anywhere near Bordeaux or Biarritz? We're still trying to decide where to move, but I've been worried about the new health care directives in France and how they affect us. My hubby is over 60 though, does that help?

The heartbeat thing may be permanent.. I never ever had them BT (Before Taxotere), but now I have pounding, heartstopping moments quite often - whenever I get overheated, which happens quite suddenly. Any kind of stress brings on a thudding heart and shortness of breath too. And also pain around the heart when taking a deep breath. I may have gotten too much though, I think they're better at dosing now. My hair has hardly grown back, I have large bald patch on top, and now have to do a comb-over, heaven help me.

Still recommend using a dark nailpolish to protect the nail bed from the sun. It worked for me and quite a few others who got the dreaded Taxotere around the same time.

Have you had that weird thing that happens to your fingertips, when you can't feel anything and can't quite manage them. I couldn't under any circumstances, get the little metal end of my phone charger into my cellphone, I'd stand there for ten minutes trying to get the wretched thing to find the hole, griinding my teeth while singing out gaily to my hubby, "Yes, darling, I'll be there in a sec". Just as bad was that i couldn't see properly, I got a sort of mist over my eyes like looking through oil. So it was all sort of stabbing around in the dark. The eyesight didn't get better either.

I did develop a craving for cherries. Must have eaten a truckful.

XX
J

peacock
Member

Re: Top Tips for Taxol?

Hi again Bahons
Our weather in SW France hasn't been so great next week, but better for having chemo. I bet next week when I have my next one it will be boiling hot and unbearable again - c'est la vie!

Heartbeats, well I have noticed that sometimes I seem to have a pounding heart, I put it down to palpitations so presumed yet another SE.

My skin is very dry, I keep rubbing the cream in that they've given on prescription but it doesn't seem to be hydrating my poor skin. What cream were you given?

I am using the ice gloves but haven't been offered the ice slippers, didn't know you could have them. My nails aren't too bad, they were very good at first but are beginning to split, but then they always did that anyway before BC. I did buy a silicone clear polish (cost 12€) to protect them and have been using that religiously since the first chemo.

Anyway, good luck with the recovery, hope the sore bits ease up.

xxxx

Guest user
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Re: Top Tips for Taxol?

Hi there Janneth and Peacock

Thanks SO much for all the info! Yes, it's me, smothered in factor 30, wearing a hat, here in SW France, cowering under a giant parasol which itself is under a pergola and, yes - my skin is like paper! We actually drove past Brive the other day, on the way to Caen for a few days, by the way - I wondered as we went past how you were getting on, Peacock.

Re: the nails - mine are painful, Janneth, but still look healthy - they've been using those frozen mittens on my hands and feet, which seems to help.

Eyes: dry and itchy, not streaming, funny how we all react differently!

Mouth: luckily, no ulcers, so far.

BRILLIANT TIP about the allergic reaction down under - I will DEFINITELY follow that one up.

Although I feel like a piece of chewed string, really tired, I've only had one day when I haven't gone out at all, can usually manage bit of a walk without too much distress, so perhaps I'm getting off lightly on the fatigue front?

Just one other thing - has anyone had strange heartbeats? (Mine sometimes feels as tho' it is racing a bit).

Thanks again.

X

S

peacock
Member

Re: Top Tips for Taxol?

Hi Bahons2
How are you getting on in your part of France? It is you isn't it that lives in France?
I have had 3 taxotere now and each time I seem to have had different side effects but the first time I had the most dreadful vaginal reaction, with soreness and itching and had to see a gynae dr. who prescribed anti histamines and a steroid cream as it was an allergic reaction and not thrush. It did the trick tho, and fortunately I haven't suffered so badly since.
My mouth always seem to feel like its swollen and double the size, well my lips that is but this does wear off after a few days.
Interestingly, my Onc seems to be thinking that instead of changing me to Epi after my 4th Tax he might keep me on Tax for the full 8 courses and I see that you are on 6. I wasn't sure it was normal treatment to stay on one type of chemo, particularly Tax but may in France that is the way they do it if you respond well, which I have so far.
Hope your "bits" feel better soon but I would think about seeing if its an allergic reaction, its worth asking.
Good Luck
xx

Guest user
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Re: Top Tips for Taxol?

Hi Bahons,
As you have asked bout side effects of Taxotere, here are a few I had, apart from those you mention.

My 4 x Taxoteres caused quite a bad reaction in hands and feet, with all my nails separating from the nail bed. After much to-ing and fro-ing I found that the main thing was to protect yourself from the sun. For the nails, I used the darkest nailpolish I could for the whole of the taxotere treatment and managed not to lose the nails,. Taking the polish off was not a pretty sight. Another unpleasant side effect was constantly streaming eyes, all day, all night, no breaks. It got so I couldn't put a tissue near the skin it was that swollen and tender. That lasted eight weeks or so, and the doctors didn't know that this was a side effect of the treatment, so didn't know what to do - some even suggested it was hayfever and nothing to do with the taxotere. Eventually I found one of the interns who was studying this side effect and he prescribed some drops which helped quite a lot, although the problem presisted for another 4 weks afer the end of treatment. I will send you details if this happens to you. Sore mouth is also an ongoing issue, i stil have mine two and half years after completing treatment. I was given nystatin drops ( so i'm very surprised your doc won't give you nystatin, R Marsden gave me this without me asking for it), along with Corsodyl mouthwash (watch out for yellow teeth) and Antepsis Suspension, which is, I believe, for ulcers or some such, but it soothed the sore mouth.

Stay out of the sun! Taxotere and sun don't seem to agree with each other.

Also terrible fatigue, and weakness. Couldn't walk more than about 50 yards, and here I'd been putting in two hour sessions at the gym just months earlier. But it passes and now I barely think about it all. Just take care of yourself, and listen to your body when it tells you to take it easy. But you knew that.
Love
J XX

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Re: Top Tips for Taxol?

Hi Jan - thanks for replying.

Glad to know I'm not the only one!

I had surgery to remove a single infected node a few months ago, but then some others decided it was party time and it was decided to give me a course of Taxotere instead. I had FEC four years ago and whilst I would liken it to be being hit by a runaway train every three weeks, Taxotere seems to be akin to being dragged along behind one indefintely.

It seems to be working, tho' and that's the main thing.....

Hope you're feeling better and that that tumour continues to knuckle down....

X

S

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Re: Top Tips for Taxol?

Sorry S didn`t mean to finish......Just to say I really don`t mind just one more I will take as much as they throw at me and it`s all doable!
Have you had surgery yet? That`s my next bridge to cross.

Good luck with the rest of your treatment,
Take care,
Jan x

Guest user
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Re: Top Tips for Taxol?

Sorry S wish I could give you tips but I am having such a BAD time on Taxotere, every time I think I know what to expect, it comes up with some different, however I still haven`t had thrush thank goodness, so I really sympathise.

I have had 4xA.C. and 3 of Taxotere. I had allergic reactions to two of those....even my body is trying to reject it!! Also because we were not sure if it is working so well, I have a meeting with my Onc and surgeon next week to see if they are going to bring my surgery forward. However there has been a definate reduction in the tumour this week so I will possible have one more!!!!

Guest user
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Re: Top Tips for Taxol?

Thanks, Debs

X

S

Guest user
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Re: Top Tips for Taxol?

maybe try the secondaries
Love Debsxxx

Guest user
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Re: Top Tips for Taxol?

Gosh, no-one?

X

S

Guest user
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Re: Top Tips for Taxol?

Dear All

My brain has indeed turned to sawdust - everywhere I have written Taxol above, I should have put Taxotere.

Sorry.

X

S

Guest user
Not applicable

Top Tips for Taxol?

Hi All

Just had 2nd of 6 Taxols.

Think I've got a good range of normal side effects:

Hair loss (no big deal - got scarves, etc)

Bone weariness (well, I just sleep more)

Brain rather foggy (OH says no change there, then!)

Sore mouth and slightly swollen tongue (but nothing too alarming)

Peeling hands and feet (slapping on the prescribed cream)

But my worst problem is thrush - just about everywhere you can imagine and few you might not.

My onc seems reluctant to give me anything with Nystatin (which I've always found to be incredibly effective pre bc) in - is there a reason for this, does anyone know? I've got some other stuff to take orally and am using bicarb and Betadiene (at his suggestion) topically by the ton, but this seems to be resulting in little more than damage limitation,

Any and all Taxol-side-effect-specific tips gratefully received!

X

S