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Docetaxel help please!!

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Re: Docetaxel help please!!

Hi Eileen. Thanks for replying and huge congrats on finishing your course of Dox. Your description exactly matches mine. Flying mind but exhausted body. I will ask my doctor about Ativan. Would just like a break for a few days to get back into a better sleeping pattern.  

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Re: Docetaxel help please!!

HI Multitasker!  I'm on my 6th Dox this week, (last one) and I mentioned to my oncologist on 3rd dose that i was awake ALL night on the steroids - I had been prescribed 8mg Dexamethasone twice daily starting day before and finishing on day after Dox.  He recommended that I halve the dose, but I'd had previous allergic reaction to Taxol 4 years ago so was nervous of same happening again.  So i cut the Dex to 6mg twice daily and it's a little better, and also the oncologist prescribed me Ativan for those few days which help a lot.  It's the agitation I find the worst - just not tired enough to sleep and my mind is flying.  The Ativan really helped with this (not sure where you're based?). I'm in Ireland.   Best of luck and each day is a day closer to being finished this awful journey. :

 

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Re: Docetaxel help please!!

Hi there

 

I had my first dose of Docetaxel 8 days ago. Previously 4 cycles of EC which I hated due to intense nausea for 24 hours. Amazing how different the chemo drugs are.

I have read thought the many very helpful tips in this thread to combat the side effects.

 

My question regards the steroids given before and during treatment. I find they really disturb my sleep at a time when I crave it so desperately. I take the second does around lunchtime as recommended but I am still so wired I only sleep for a few hours. I do not get any extra energy or appetite other people mention. The effects seem to take days to leave my system or maybe my body clock gets into a bad pattern.

 

Has anyone successfully reduced the level of steroids they take and did this help lessen imsomnia?

 

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Re: Docetaxel help please!!

Hi Linda thank you for replying so quickly to me. That sounds really hopeful😄, I will definitely be trying this with the lolly ices I will take some with me in a cool bag on the day, as I don't think they have any lolly ices in any of the cafes at my hospital.you are willing to try anything and everything !! I have also had this problem with the corners of my eyes I didn't lose my eyelashes until the docetaxe! On the plus side I saw my oncologist's registrar last Monday before my 6th treatment, and she said she couldn't feel anything and it has responded well, after my 2nd treatment on FEC she said it was 5cm,  initially 6cm but they did say the 2nd half of treatment would really kick in. I wish you well and hope your treatment is coming to an end soon for you 😄👍it was so kind of you to reply back to me. Thank you so much ❤ Vonnie X

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Re: Docetaxel help please!!

Hi Vonnie,

 

I am now recovering from my last Docetaxel and have a few suggestions that may help you with your last one, I hope they help.

 

I had indegestion badly after 5th round and my oncologist prescribed a tablet for this, no problems this time.

 

I had sore, watery eyes that felt painful in the corners, regular eyedrops that you can buy from a chemist or supermarket made this less of a problem.

 

As regards taste I feel that the suggestion I was given by the chemo nure has helped me. At the second Docetaxel infusion I told her about my mouth tasting and feeling disgusting plus the lack of taste or things tasting awful. She suggested that I sucked an ice lolly just before and during the time the drip was going through. Apparently there is research being carried out regarding this method. I had three lollies and my mouth recovered much quicker and was not sore, just had white coating for three days. During the last infusion I had five lollies and things have been even better. Day 10 and I am beginning to get much more taste than last time. May be worth a try.

 

Good luck, I know how awful it feels to not be able to drink and eat normally. I now have a list of foods/ drinks I am looking forward to and watching people eat and drink on TV etc. does not help.

 

Best wishes,

 

Linda

Member

Re: Docetaxel help please!!

Hi I am I know this is a late reply but only joined the forum recently. Hope you are feeling well. I am on the same treatment you have been. Being 4 x doses of Herceptin, docetaxel, and pertuzamab, this is my 2nd half of treatement, i have had my 6th chemotherapy and have my last 7th one on he 3rd September.initially I was on FEC, I coped ok but had to have Emend anti sickness too, which did the trick, still being given them with 2nd half of treatment and seem to work, no nausea etc on this one, but side effects are not nice, they kick in about day 3/4 after chemo, and go through to day 10/11when I start to feel a bit more human., but you have to just keep positive and focus on  the end. I have had the same side effects as yourself, aching, diarrhoea, sores in my nose, and tingling fingers, basically feeling like been kicked by a horse, but the worst side effect for me has been my mouth, I physically cannot eat from day 4 to day 10/11 and I am so hungry, I have to live on complain with ice in, and cold coffee with ice in too, I get terrible heartburn, I am taking  codomol and mouth washes and gargling with Asprin, I tend to get through it. I have tried every food, drink possible but it tastes foul, I have become obsessed with food!!! I just cannot explain how it is to anyone. I  have heard that your taste returns within 4 to 8 weeks of last chemotherapy, has this happened for you? I am worried it won't ever come back ☹️☹️. My surgery is scheduled end of September too. 

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Re: Docetaxel help please!!

Hi 

I wonder if anyone can tell me if this has happened to them and if so what treatment did you eventually receive? 

I had two rounds of herceptin,pertuzamab,dozataxol, and charboplatin. Following the first round I developed neutropenic sepsis so the dozataxol was reduced by 25%. However I suffered almost as badly in the second round so the dozataxol was discontinued. I finished my third round of the other three drugs 7days ago and intially thought I'd done well until day 4 when I the nausea started, I was on Emend so thankfully didn't vomit but despite also being on ondasterone I had terrible diarrhoea, thrush (despite taking prophylactic nystatin) and felt  just awful. Today is day 7 and I'm just about coming back to a semblance of normality, managing very small amounts of diet. 

Has anyone had similar and has anyone just been given herceptin and pertuzamab as a result? Encouragingly my tumour as responded well to the targeted drugs and shrunk to the point of being unpalpable. My surgery is planned for September after 6 rounds of treatment.

thanks to anyone who responds

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Re: Docetaxel help please!!

Am I pleased to hear there may be light at the end of the tunnel! I started with diarrhoea the night of my first Docetaxal, and, like you, had been relatively good on FEC. I’ve been put on tablets and mouthwash for oral thrush but have thrown up after the mouthwash twice. Today is my day7 so really hoping I’m the same as you and things pick up tomorrow. My tongue is green and I’ve never felt so minging in all my life! I have aches and pains and bugger all energy. You’ve given me hope, I may be able to take the dog out tomorrow! Thank you x
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Re: Docetaxel help please!!

Hi El Katrano, re the cutlery... my friend bought me some as she had heard it might help with chemo - I actually laughed at first but then had a strong metallic taste from FEC and noticed that it was even harder to eat foods with metal cutlery! I just put the fork in my mouth and it sent my teeth on edge. I swapped for plastic cutlery (which was kind of fun too!) and stronger flavours in my food like garlic/curry, and that did the trick for a few days xx
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Re: Docetaxel help please!!

Hi, I'm new on here but just thought I would share my experience. I'm coming up to my third and last Taxotere after having had three FEC. I came through the FEC OK with just the normal side effects such as nausea, sickness and mouth ulcers etc but nothing too serious. I was nervous about Docetaxel (or Taxotere as I thought of it) and with some reason! The first week to eight days of the first session were horrible. I had a bit of an allergic reaction but felt like something from the film Alien. I couldn't even pin down how I felt. Flu layered with sickness, total loss of appetite with nothing tasting nice. I'd always yearned to lose my appetite but definitely not like this! The whole thing was made worse because I had no idea how long it would go on for. As it was, on day eight I suddenly felt better and went out for a long walk. Felt much, much better afterwards and only had a severe bout of the runs to contend with. I think the Alien left my body then and I have to say I felt pretty good right up to the next one. At the time I thought I really couldn't do it again but I did and now know that there is an end and just want to get the last one over with on Thursday - hooray! Hope that this helps. BBB.

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Re: Docetaxel help please!!

Apolgies for joining this late on in my treatment but I'm here now! Just to say that I had my last chemo a fortnight ago. I started with 3 FECs followed by 3 Docetaxels and I know which of the 2 I prefer!!! OK - the FEC made my veins collapse so that I now have a sub-cutaneous port inserted as I am on Herceptin for a year, and I was sick on the 1st evening after FECs 1 & 2, and it did give me a headache, but compared to the 'Dreaded Docetaxel' FEC is a doddle. As I said, I am now 2 weeks after my last Docetaxel and the dreaded chemo gremlins are still hanging on in there! I have swollen ankles due to fluid retention which is making my legs ache and feel like lead weights, I feel and look like a barrage balloon, and my feet and fingers tingle like mad. I feel worse now than I did after each of my docetaxel doses, and my chemo nurse said that this is often the case with residual chemo effects hanging around for 6 to 8 weeks after the last chemo dose. My hair is beginning to grow back, albeit fuzzy so that I look like a 'fuzzy-wuzzy' badger! I will never, ever complain about having a bad-hair day again!!! However, my eyebrows seem determined to continue to disappear going the same way as my eyelashes. Who is this stranger that is inhabiting my body?

I start my radiotherapy on November 17th and am due to have 15 sessions, the last being on December 7th so at least I can look forward to all my treatment (other than the herceptin which is not chemo) being over so that I can finish 2011, my 'Annus Horribils' and start 2012 without the NHS pulling the strings!

All I can say is that at my very first appointment with my Oncologist way back in June I was told that the chemotherapy treatment I was going to receive was referred to by the initials of the drugs in question – FEC-T. For those of you who are fans of Father Ted I would say that never was a treatment so aptly named!

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Re: Docetaxel help please!!

Big Bump!

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Re: Docetaxel help please!!

Similar to Happy Carrot - but have almost forgotten about it already!Horrible taste was probaby the worst for me but that has gone now as well. Finished rads about 2 months ago and they were fine .
Hi Shar ---- Glad to see you have done so well too- seems so long ago now we were just starting and so apprehensive! Onward and Upward!
Margaret x x x

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Re: Docetaxel help please!!

Hi Supertrouper and all other Tax sufferers. I had my second dose two weeks ago and woke up day 4 SINGING! Yes, I actually felt like singing and noticed music again. This time I have coped better & knew what to expect. Shooting pains didn't happen this time but had terrible mouth and throat ulcers, plus felt generally bleugh. My tongue went almost white and that scared me a bit - thought it might choke me in my sleep! I think I am unlucky with the throat and mouth thing and don't think it affects everyone. Didn't help that I forgot not to eat citrus and had a few quarters of an orange. This went on for around 12 days with odd days in between feeling okish. Day 10 was worst, actually felt sick too but had an anti sickness pill and that did it. This time (I'm end week 2) have felt close to normal and even pre-DX normal these past 4 days!

The first one was quite awful, plus my neuts crashed and I ended up in hospital but I got over it well enough. The pains will subside after GSF injections but mine were taken over by very sore throat and mouth so eating was painful, taste was horrible, noticed bloody scab in my right nostril, left eye twitched like mad and had sensitive hands and feet. This lasted for around 10 days. After that I started to gradually feel normal again - but it did knock me for six! Only one left to go - yay! So far still have hair tho very thin, nails seem ok, put on a little bit weight. Mouth ulcers healing nicely and my head is clearing (was so out of it). About to enter week 3 and am feeling pretty energetic one day then rest the following day,and get last dose on Friday, gulp! Supertrouper you will gradually feel better and shrug it all off after about day 12. I know it sounds like a long way but you will be fine, just listen to your body, eat and sleep when you feel like it and try to get out for some fresh air and a little walk, it helps to get it thru then out your system. I drank loads of water and juiced carrots, apples and pears. All the best. Bella

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Re: Docetaxel help please!!

I am bumping this for me!

Had my first Docetaxel on Wednesday and really thought I would be okay. But for the past two days I have been practically bedridden with aches and pains just about everywhere - even my teeth hurt. My fingers feel like they have been shut in a car door and even typing on the keyboard is hurting!

I've taken pain killers, my temperature is fine but the I have no energy at all. This is day 4 - when am I likely to feel any better or is this going to get worse?

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Re: Docetaxel help please!!

Thank you Liz, how are u on tax, do u have rads, i had rads and skin healed so well, just now my nails started to go....... Shar x

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Re: Docetaxel help please!!

love to you shar hope you are well too
Lizz xx

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Re: Docetaxel help please!!

love to all you taxers, hope all is well for u all Shar xx

J01
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Re: Docetaxel help please!!

thanks shar need that J XX

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Re: Docetaxel help please!!

Hi shar

I had my last zap today! Start Tamoxifen tomorrow so moving onto the next chapter. Lost 4 nails in the end Smiley Sad and my legs and feet ache but other than that not so bad. How about you?

DaisyGirl xx

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Re: Docetaxel help please!!

hi how are all you taxers? today is 6 weeks post tax and half way thr rads. hope u all ok, tastebuds back nails still fab, so please find incentive in this if u are suffering, it really does get better

Shar xxx

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Re: Docetaxel help please!!

hope ur tastebuds back J i totally sympathise, lots of love cyber hugs Shar xxx

J01
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Re: Docetaxel help please!!

evening evryone

Thanks for the feedback on 'taste buds' post tax, I am now heading into (tommorrow) week 3 post tax2 so I will be keeping a watch on 'tastebuds' its hard to judge at mo as I have been subjected to another possible bug?? sick a couple of times fri night and the dreaded trots ever since...I have wondered if it'Ninja's 'tax trots' eeee what we have to pur up with Im with you ET 'what is normal' thanks dixons I am hoping for a swift return of my taste buds so I can taste all the Florida delights!!! I am hoping anyway it has been a long road it started in Jan with dx followed by 2 ops, then the chemo, I had booked hol last sept!! OH and me saved for 3 and a half yrs to take our kids, and on several occasions I was convinced I would have to cancel.... how do you tell a 9 year old autistic boy and his younger sis(7) ...sorry no holiday???? still gotta hope next TAX goes ok and then it will be all ok.... I will try not to think of the MX/Recon and RADS when I come home!!!!! And Dixons thanks for the reminder of the light at the end of the tunnel I can lose sight that even though I have been there before!

Gotta go kids to shower and get to bed.......hooray!!! love em but bed time is bliss xxxx

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Re: Docetaxel help please!!

hi dixons, yes i am pretty much like you, i have had a couple of days recently when i have felt exhausted, it creeps up on you doesnt it, i dont take things for granted now like i used to do, you know like jumping out of bed in the morning lol, now i hobble for a while instead,

great to hear you are getting there too, love and best wishes Liz x

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Re: Docetaxel help please!!

hi ladies i just want to say that there is light at the end of this long dark tunnel. I had last tax 14th april and finished rads 3 weeks ago. Currently on tamoxifen and herceptin. Taste buds back to normal and hair growing nicely. I never thought i would start to feel normal again, i have just painted my bedroom. i still get days when i am exhausted and scar site still sensitive from rads, have achey days and feel weepy and a bit down but each day i feel a bit better than the last. during chemo you don't think you will ever feel wll again but you do. Keep strong everyone xx

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Re: Docetaxel help please!!

I'm on EC and my taste buds return by week 3 .. at the mo (week 1) my mouth feels like fuzzy felt .. and a bit numb! Energy slowly starts to return in week 2, and by week 3, as everyone says, you try and cram as much in as possible - cos you feel normal. Remember normal? Can't believe how much I took normal for granted...

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Re: Docetaxel help please!!

my taste buds return for week 3....

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Re: Docetaxel help please!!

As you say El Katrano everyone is different. I started FEC in January and had my last Tax on 30th of April- that whole time my taste buds were shot. I didn't get my taste back in week three I still felt as if I was eating soapy cardboard. About three to four weeks after the last Tax things started to taste normal again. I just had to find foods that had a strong taste to try and get through the "soap" and drank nothing but sparkling mineral water.
All the best xx

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Re: Docetaxel help please!!

Hi J - seems again that everyones different, however most people OK by week 3, best time to plan anything is around week 3.
For the metallic taste I hear it's best to eat with plastic cutlery ? I've never had that personally, mine was like soap. It's worth a shot though it's cheap enough.
xx

J01
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Re: Docetaxel help please!!

hi all

Hope things ok for eberyone...I am now day 10 post TAX 2, and everything tastes like metal!!! I am fed up with it , I hope TAX 3 goes ok, as a lot of you know I am on holiday if it does!!! I want a concensus of opinion as to when tastebuds start to get better, I think week 3 after TAX 1 was ok ....but I can't remember!!!!!.....HELP, I want to go on holiday and I want to go with reasonable tastebuds!!!???
Love to all
Jeanette xxxx

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Re: Docetaxel help please!!

Nah GIJAne - shout it from the rooftops, I'm bl**dy ecstatic in week 3 with no SEs and taste back, I bounce about all over the place being so glad to be NORMALand I eat everything in sight too :-D I do loads in Week 3. Just had 2 terrible times on TAX, it doesn't personally agree with me but I've had unusual extreme reactions to be fair. Must be doing something right? If theres any cells left by the end of this then I'd be very surprised!

Enjoy those times you're not feeling like death warmed up xx I do!

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Re: Docetaxel help please!!

Nah GIJAne - shout it from the rooftops, I'm bl**dy ecstatic in week 3 with no SEs and taste back, I bounce about all over the place being so glad to be NORMALand I eat everything in sight too :-D I do loads in Week 3. Just had 2 terrible times on TAX, it doesn't personally agree with me but I've had unusual extreme reactions to be fair. Must be doing something right? If theres any cells left by the end of this then I'd be very surprised!

Enjoy those times you're not feeling like death warmed up xx I do!

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Re: Docetaxel help please!!

I feel I should say this VERY quietly.... I'm in my good week... and bouncing... and tasting... had fab LGFB session yesterday, lunch out today, and SO excited that Monday is my last treatment.... sending BIG hugs to all who are suffering at the moment - I will be next week, but for now, I'm enjoying this week..... big hugs...Jane

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Re: Docetaxel help please!!

Got on ok with the first two lots of tax, but the third one has been a s*d. Lot of fluid retention, upset stomach, several days of very rapid heartbeat, generally absolutely cream-crackered. Onc is seeing me next Tues with a view to possibly reducing the dose of the final one. Being a silly person, I'm still working full time through all of this of course (can't do a thing with me...)
Ann x

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Re: Docetaxel help please!!

Hello tax ladies, how are you all getting on? I'm due my fifth tax this week, only one to go after that. Se's havn't been too bad but over past few weeks I have had a very achey and stiff lower back, I was wondering if anyone else has experienced this?
I'm sure i was told before I started that lower back pain was a possible se, but getting a bit scared that mets in spine are back, had no pain for a long time after rads to spine. seeing onc tomorrow and will speak to her about it but in the mean time can anyone ease my worries?

pumpkin

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Re: Docetaxel help please!!

Hi Shar, and Claire, nice to hear from you both,

Shar did your onc decide on just 2 tax I thought I remembered you saying you were on for 3,

Claire, I have now finished my rads,

I dont know about you but I have a list of ses as long as my arm, I feel like a little old lady, lol, I am hoping that over a period of time I will improve, there is a lot of stuff I want to do but carnt, I will get there, how are you keeping these days?

love liz xx

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Re: Docetaxel help please!!

hi elizabethtracey, how are u? Im 2 wks and 5 days post tax!!! celebrating weds cos then would be next tax but having none and starting rads 25th July - Elkatrano se's will get better, i finally am getting some tastebuds back and ulcers cleared up feel like a new women!!!! Shar xxx

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Re: Docetaxel help please!!

TAX far worse for me than FEC was, however, mine was also a reaction to Filsgram Injections with agonising pains which saw me crawling about in tears. Once that was under control it wasn't as bad.
I also got oral thrush which was horrible.

This is all *touch wood* under control now, no injections for me anyomore and we'll see how I get on.

SE's are controllable, whats scary is not knowing how long it'll go on for if it's something you're stuck with that feels unbearable, but so far, nothing to be stuck with xxx

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Re: Docetaxel help please!!

Two tax down and two to go here, not too bad for me apart from the reaction to the Filgastrim injections which is extremely painful. I hope the remaining two are bearable.

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Re: Docetaxel help please!!

Tax finished here too shar, was monday.
Not having a good time, should stop playing with the traffic I think! fec was much kinder to me.

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Re: Docetaxel help please!!

hi everyone - tax finished!!!! how has everyone got on with it? I would rather have this than FEC and my nails stll long and strong!!!!! Shar sx

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Re: Docetaxel help please!!

Had my 3rd TAX 09/06 so now on day 15 of SEs! This one was really bad, I was in so much pain on the Sunday I just went to bed and cried, couldn't even sit in a chair until the following Tursday my legs were so weak Smiley Sad

Nails OK up to now sore but still there! Mouth & stomach SEs not too bad, but my eyes are driving me mad this time, very sore, itchy and watery but not so bad today and all other SEs fading.

Its my birthday on 17/07 and we are spending the weekend in Kingston Upon Thames where there are a couple of good gluten free restaurants and I am looking forward to being able to taste the food!

Starting Rads 18/07

Hope everyone is OK

DaisyGirl xx

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Re: Docetaxel help please!!

hi liz - found you on here - how are you doing with rads?

claire from rads qe thread

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Re: Docetaxel help please!!

hi shar, was wondering where you had got to, how are you getting on with the tax regime,

i am having my rads now, following 6 tax,

hope you are keeping well,

love Liz xxxx

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Re: Docetaxel help please!!

hey you fellow taxers,just wondered how u are all doing? I am having my 3rd tax next Weds and just wanted to catch up with everyone Shar xx

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Re: Docetaxel help please!!

Hi fellow taxers, had second lot of tax yesterday along with herceptin and zometa, a very long day!! anyway I nearly didn't get my tax as had reaction twice. After another two lots of steroids and antihystamines third attempt went ok, was vey worried as they said if it happenened a third time they would not continue.
just waitng for se's to kick in which they said might be worse because of having zometa as well, FAB!!

Hope you are all doing ok and se's are not to bad.

Daisy girl I asked them to prescribe me antepsin for stomache problems I hope that helps cos last time was unbearable, so thank you so much for posting that.

Pumpkin x

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Re: Docetaxel help please!!

Hi Everyone

Has my 2nd TAX yesterday and not feeling too bad at the moment. Armed with all my pills and potions from TAX 1 I am hoping the SEs will be short lived!

May the force be with us and SEs be kind to us all!

DaisyGirl xx

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Re: Docetaxel help please!!

Hi everyone
back from 1st tax everything is well so far
i wait for se to start in 24/48hrs
hope they are kind
take care everyone
maxine xxx

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Re: Docetaxel help please!!

i got twitch eye/face after TAX - i am nearly 5 weeks post last TAX and i am finding now that the twitching is lessening i think - more noticeable at night if i am tired so take heart hopefully it will go away.

claire

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Re: Docetaxel help please!!

Almost two weeks after final Tax and my right eye has started twitching and is very watery - I keep getting a tear running down my face. I thought I'd escaped that particular SE, but Tax has a habit of biting on the bum just when you thought you were safe!

Jane xxx