Need positive posts about TAX

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Christine I’m sure it’s just a fear of the unknown… If you think back to before fec you were very worried too but it’s been manageable and will be the same with tax I’m sure… And it does go past very quickly… Can’t believe that’s me 5 down and only 1 more to go. Jus listen to your body and call your unit or GP if you need any meds to help.

ST and Laurie I didn’t shave my head so I have what my sister calls baby monkey hair… Very short wispy and fluffy with baldy patches across the back and a tiny tufty fringe… Eye lashes are thinning as are eyebrows but still visible… One fingernail is half off my middle right hand but all the others and toenails seem pretty intact… Didn’t have the strongest nails before treatment anyway.

Libby how are you doing a week after your last swamping?

Lulu xxx

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ST, great news about the holiday, think I read on another thread you are going to Corfu? It will do you a power of good and looking forward to it will be a tonic. Think I may try Emu Oil on my hair as mine’s not sprouting much at all, maybe I’m being impatient!

Oh Christine, do try not to overly worry about Tax. Keep in mind not everyone suffers …however, I flipping did. I’ve read some ladies accounts of finding Tax easier than FEC, and I hope you are one of the lucky ones.

Lulu, you are getting ever closer to the end of chemo, only one more…that’s great. Wishing you mini S/E’s this cycle. Today my energy levels are better, no upper body aching bones, but still dizzy, horrible mouth and not enjoying food, the worst S/E for me is my aching legs and sore feet as I can’t walk for more than 10mins on the flat, I feel I have no quality in my life at all, so hoping that improves over the next few weeks. Psychologically I’m better, just knowing no more swamp juice is a lift, and think this may help me move forward soon. I haven’t been out of the door since last chemo, but tomorrow I’m at the Hospital to give blood for a trial I took part in so it will be a test to see how my mobility is from car park to unit. I shall be frustrated if I’m in pain as the Hospital is in the city centre, and I’d love a short walk round the shops, I’ve nearly forgotten what shops look like. I’m jealous of your baby monkey hair, wish I had some. I was sat this evening in my bath robe, wearing glasses and sporting my baldy head, and my witty (not) hubby said to my dau ‘when mum’s in her robe she reminds me of the Dalai Lama’ ‘cheeky’ said I, and then we all burst into fits.

I’m hoping for some shut eye soon, up at 9.00 tomorrow.

Take care all.

Libby x

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Christine

You’ll get through it - the anticipation is the worst. Definitely make the most of days 1-3 of TAX before it kicks in and be prepared to batten down the hatches if the TAX truck should hit (although actually, it more comes on gradually)

Make sure you have painkillers (Co-codamol 30/500 was good for me) for aches and sleeping tabs are also a good idea to have on standby (Zopiclone 3.75mg)

I think the absolute worst side effect was the loss of taste and appetite. I didn’t have any problems with my mouth or throat and in fact had lots of mouth probs on FEC.

The other thing that got me down the most was the sheer exhaustion, not only how it affected me physically but emotionally. I didn’t feel ill at all before chemo and then had 5 months of feeling like an old crock, getting upset because I couldn’t get out of bed to see the kids off to school, or get out to walk the dogs or do the shopping - I felt utterly useless and a drain on my family.

Looking back now, I’m amazed I am back to normal in less than 6 months after the whole chemo thing started.

Thanks for asking about my scan results. I think I may have said something on another thread but can’t remember (DOH! Chemo brain lingers on…)

To be honest I am none the wiser really as the only scan they had to compare my CT to was my first staging one back in June when they found the mets. In the meantime, I had had a breast MRI (again nothing to compare to as it was my one and only and done 1/2 way through chemo) and a liver ultrasounds which showed progression after FEC. It was a bit like trying to compare apples with oranges. The onc said there were “No surprises” so I’m taking that to mean that they didn’t look at it and say “Dead woman walking - quick get her back on chemo!” She was going to go over the CT and my TM’s with me but with one thing and another (I had to get my Zometa) we didn’t get round to it.

They’re going to discuss me at the MDT today and call me next week so I will have my question book with me at all times so I can fill in the blanks. Hoping I get a bit of a run on Tamoxifen and AI’s before I have to go back on chemo but time will tell.

Lulu - You’re nearly at the finishing line now! I’m so impressed you have been able to withstand the 5 so far.

Libby - The Dalai Lama has a twin living at my house LOL. Good luck with the walking today and hope you manage to squeeze in a bit of retail.

Lx

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Laurie, any update from the MDT? How’s things with you?

Hope everyone else is OK. I’m now two weeks post last Tax, and S/E’s lessening. Wish my taste buds were 100% - we are visiting friends this weekend and my friend is a wonderful cook, hope I am able to do her food justice. It will be the first time I’ve been away from home since my treatment started, I’m a little nervous, particularly about the journey as it’s 3hrs, but OH has put a pillow and a quilt in the car for my comfort…so hoping I sleep most of the way.

Wishing everyone a good weekend

Libby x

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Hi everyone

It is now nine weeks since I had my last Tax. I still have numb finger ends and toes and still losing finger nails 6 out of 10 so far but the new nails are growing. I shaved my head for the last time on New Years day and I am pleased to report that the hair is returning and there are no bald patches. This week I noticed that my eyebrows are just starting to show through and today I spotted some teeny tiny eyelashes! So exciting to see things returning. Taste buds returned very quickly, and chemo weight gain has gone. Energy levels much better but still need to rest.

Next stage for me is Radiation x 15 - starts on Feb 7th and then active treatment will be finished! Holiday booked for May and then the rest of my life to look forward to.

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Southernlucy and Libsue, I also am in Bexley Wing for treatment - and I agree about the quality and care.
Maybe we should start an old pals’ group!
Mujum

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Evening girls. Just popped back to say Tax is such a distant memory that I can’t imagine feeling sooooo exhausted. I finished Radiotherapy ten days ago. Three intensive weeks and lots of people warning me about blisters and weeping skin areas. So far so good. A nightly thick coat if Aqueous Cream allowing it to soak in and 300 mgs of Asprin to help inflammation have been ace so far!! ( I thought about taking the Asprin because it is recommended if you have sunburn to reduce the inflammation . I felt it was worth a try) )
I have not had the fatigue with the DXT that I expected. I fact I am full of energy and do not sleep on alternate nights but have no tiredness… Odd woman!!!
I miss looking at all your postings every day, but again doing that is very much a chemo thing. With the fatigue and odd side effects life is so much more secure knowing somebody else has the same problem. Now normality could be the next step, if my bone scan is ok.
I long for my hair to grow but it is about one inch white with black spots. Dalmatian rather than Cruella or Gollum now. My nails are all intact so the dark nail varnish / creaming has proved to be equal!! Forget the dark paint girls.
Thank you all for being there for me. If I can be of help at any time PLEASE P.M me
Hold on in there
Cackles

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It’s a small world mujum, I post in the October group and another two ladies there are from Leeds. We are fortunate aren’t we, Bexley Wing is so state of the art, and the staff wonderful.

ST and Cackles, great to hear how well you are doing. Both of you were very supportive to me when I was distressed and feeling desperate, I’ll never forget how much you helped me through the dark times.
ST, good luck for 7th Feb, I’m sure you are prepared for it and want it out of the way! Yes, you can then look forward to living your life, how exciting! I know you’ll definitely embrace life, go girl! Now, hair, eyebrows/lashes are making an appearance they will come on leaps and bounds, be lovely if you can ditch the wig for your holiday.
Cackles, I’ve taken on board your tips re rads, thanks. Wow! steady, all this energy you have - certainly gives me hope. I wish you a good result with your bone scan. One inch white with black spots, sounds good to me, I’d be happy with an inch of yellow and pink spots…I want hair, any colour!

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Hi all.

4 weeks today from last Tax and although quite euphoric at 10 days when my taste came back now I am still finding my legs ache when I walk up the slightest incline and still get breathless. Have started on Letrazole and managed to fall down the stairs (luckily on my well padded backside) so not sure if that is the cause of the aching joints. So feeling a bit miserable that I haven’t bounced back as the old me. Does that ever happen. Although Cackles you give me hope with that one.

Libsue and mujum it would be nice to meet if you are in Leeds, I am along the M62 near Halifax but have my rads at Bexley wing and have been indulged at the Haven, very nice aromatherapy massages.

For anyone about to start Tax I did find it miserable but mainly due to the fatigue and how it made me feel emotionally plus the disgusting mouth which just takes away the taste of everything and converts the texture to wallpaper paste. But no sickness and although my nails look a bit ropey so far they are intact. Each post tax week you just have to remember it will pass, it’s one nearer the end and us ex-taxers are all willing you on.

So far so good with rads but then I’ve only had two lots. Hair grey 1cm and standing on end, good startled baby monkey impression. Can see some darker stuff coming through. Have so much hair envy it’s not true.

Julia x

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Hi mujum and southernlucy,

I have started this thread re Leeds/W.Yorks.

share.breastcancercare.org.uk/forum/viewtopic.php?f=40&t=35625&p=630586#p630586

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Hi Taxers

I had my last TAX on friday, tastebuds still with me at the moment but i suspect they will be deserting me soon. I got a little mouth thrush with the last one…disgusting!! Onc prescribed me some nystatin this time to coat the tongue which im using religiously along with the difflam so hoping to avoid that this time.

Anyone have trouble with twitching in the eyes? i got it occasionally but seems to be more this time, so annoying!

Most of my lashes have done a runner but still have a few brows holding on for dear life not sure they will hold on for long!

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I got twitchy watery eyes whilst on Tax - along with dripping nose. Charming eh?? Couldn’t go anywhere without a pocket full of tissues which just wiped off the eyeliner that was supposed to hide the fact that I had no eyelashes!! But…eyebrows are beginning to return and eyelashes too.

So remember…

THIS TOO WILL PASS!!

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Thanks ST yes ‘it will pass’ im determined not to be bought down on this one im just so pleased to be on last chemo cycle, thought it would never get here! x

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Clare

I’m so glad you mentioned that! I have spent the weekend aware of my twitching right eye which I have had since November. It doesn’t do it all the time and it’s very subtle but definitely there. Guess it’s a side effect that only people who have been on it know about. Bit like the breathlessness - noone told me about that and it took until 6 weeks after TAX for it to go.

Great that you have finished and hope you get over this one soon.

Laurie x

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Wey hey Clare… You must be pleased to know this is nearly the end of the SEs.

I get a twitchy left eye… Also feels like I have twitchy hands… Like I have the shakes but not really visible to the naked eye ut do have a bit of dropsy.

My eyebrows are still there but the look better than they have ever looked as they have thinned and are a really nice shape… Just hope that I don’t lose any more now… Eye lashes are mostly still there but have lost a few.

My mouth has been awful this time, taken even longer to get back to normal than usual and still not right yet… Was on double dose fluconazole, got nystatin, difflam and bonjela but still rubbish :frowning:

My nose is crusty, running, bleeding, red, scabby, spotty, snuffly, drippy… Everything!

Still constipated… Iv gone a few time but still bunged up and got sore tummy and mega wind.

Not been as breathless since stopping my water tablet 6 weeks ago, but still utterly knackered walking or climbing stairs and heart rate still feels fast.

Finger nails seem to have stopped coming off now, but none fully off and only two whole ones… Finger tips quite tender and feels kinda tingly.

Bones still aching especially left ribs, fingers and through my feet… Which also are tender at the nail beds but not lost any toes nails.

Also get a muscle pains in my legs… And feel sooooo achy when I stand up.

Feeling much tired this time tool… Sorry I know it’s not positive but just a kinda round up of current SEs… This is day 11 of tax no 5.

I know it will pass too and I’m just glad that I only have one more tax to go…

Take care ladies hope your all recovering.

Lulu xxxx

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Lulu - 5!!!

You are my new hero! I can only imagine how urgh that must be. You’re doing brilliantly!
Hang on in there…

(((hugs)))

Laurie x

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Evening girls…so lovely to read your posts …You all sound like ladies having Tax.!!! The twitches. The yuck mouth, dripping nose,the legs that give way , the tingling nerve ends etc etc…Hair envy, missing eyebrows continue. Somebody out there is having a joke. I have just shaved my legs for the fourth time and the hair is black.never have I had black hair!!! What is going on. It is not an attractive look neither is the half inch of white with black spotted fluff sticking up from my pate…
Laurie, lulu, Clair, Libby,Julia, mujum, Wineo’clock, It really does feel ok after six weeks ish but it takes time and still bites you on the backside every now and again.
It is lovely hearing that some of you are near Leeds ans will meet up. My son went to University there and I love the area. Starting Chemo in August girls are meeting in Warwick in Aoril. All are welcome to join us. Just add your name to the list.
Thinking of you all
Cackles

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Thanks Laurie, its good to know the twitching eye is a normal se and not a new problem but is very annoying

Oh my goodness Lulu, 5 x TAX!!! I nearly gave up after 2. You seem to be suffering with all the SE’s hope they all pass very soon. I also have dropsy syndrome, i was clumsy before this but i am ridiculously clumsy now and have been blaming chemo so glad you said that hehe. Just yesterday was out with hubby getting a few bits and he gave me a yankee candle to hold…i was like nooooo ill drop it

Hugs to all x

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Hello all, now 6 weeks past 6 x Tax, it all seems a distant memory. Still get very tired, but breathlessness eased after about 4-5 weeks, as did jelly legs, although I do know if I have overdone it.Eyebrows seemed to start growing back, then disappeared again and look very sparse. Eyelashes too, I have lost quite a few and cannot wear mascara on lower lashes as it just goes all over my face! Dripping nose and eyes still a problem, any eye make up I wear just gets washed off. Hair growing slowly, but surely, although seems to be growing faster on sides than on top! I am with you, Cackles, with the hair envy, I am desperate for a full covering and am also obsessed with other people’s eyebrows - there are some very peculiar ones about but I would be grateful for any! Fingernails are awful, ridged and yellow from nail tip to about half way down, toe nails are perfectly normal! Would rather have it the other way round, but hey ho.
Love to all you current and past Taxers, it is doable, although after the first one I was ready to run to the hills. After about six weeks the awful memories WILL fade! Occ Health and GP will still not let me go back to work yet though, which is getting me down a bit because I keep psyching myself up to go back and then someone else puts a spanner in the works!
Hang in there girls, you can do it.
Liz xxxx

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Liz

I’ve only just found this, 8 months after I finised 8x tax… I would say listen to them about returning to work, I went back far too soon and it took forever to sort it out. In fact it took 6 weeks off followed by 2 weeks of holiday after surgery to really get myself sorted.

My eyebrows/eyelashes are still not really growing properly so I have had them tattooed! painful but so worth it. My hair is really doing it’s own thing, its all different lengths, it’s curly and yet it’s straight in places. CRAZY! Today I think I look like David Essex, last week it was Kenny Dalglish!

Issy