I am glad hear the stories of life after tax LOL
Just wondering roughly how long after the last tax did folks start to feel better? I’m due no 5 next week and usually starting to feel a lot better by now and although mouth and bowels have settled down I feel completely drained and still weak and wobbly although no as bad as last week.
Lulu x
Hi Lulu,
Sorry to say but I definitely found the TAX cumulative. 3 days in bed with the first, 5 with the second and 7 with my third. However on a positive note, I stopped having to take to the couch in the afternoons, around 3 weeks after it finished.
Are you having 6?
Laurie x
Hi All
As I am receiving TAC, I think that means I’m getting Tax along with a couple of other ones… I’ve found it accumalitive, I seem to be getting more and more tired as it goes along, but I can mostly sleep at night and still feel tired during the day - as an average I get about 8 - 9 hours a night. Maybe I’m sleeping too much! I am having my 5th dose next Thursday but I’ve managed to do some work this week (I am working from home and it’s a sit down job, but I do need to concentrate and that is sometimes difficult!). Maybe the dose isn’t as big when it’s not on its own, I know it takes an hour to drip through.
Weme
Evening Taxers…can’t keep away having said goodbye just this morning!!!
Lulu you are amazing, You remain cheerful after so many Tax- three was enough for me even if I did tell my GP only tonight that it wasn’t too bad…I must have chemo brain!!! It is six weeks since my last dose and only this week have I felt energetic…but I am an old lady!!! Well old- perhaps not a lady. I think it takes a long time to get over this treatment and many of us return to work etc too soon. If you can, give your body a rest. The worst employer re making one feel guilty having time off sick is the NHS. It is so stretched in places that you feel guilty letting collegues down. A strange kind of emotional blackmail takes place and we don’t give our friends the rest we would ask our patients to take.
Claire as a mother in law myself I think you should get your OH to tell his mother that you need time to rest whenever you want without anybody else in the house. He could tell het it makes you feel guilty to do so when she is downstairs with nothing to do. Anybody in your space for more than a day is too much, especially when you are on Tax. You need looking after in a relaxed way, and that is with your own family. Then the odd temper outbreak and lack of communication is not regarded as a criminal offence. If she wants to help give her the ironing, or get her to do a weeks meals so all her son has to do is put them in the oven. She will probably be relieved to have an excuse not to come so much…unless she is like my MIL who would come to " look after me " if I was sick - I had to get out of bed to cook her lunch plus clear up after she had gone.
Laurie lovely to have you back on line. I agree re the injections awful but worth it . You went back to work quickly. How did you manage?
Libby it is fantastic to see you are now so upbeat. I was told by the radiotherapy team NOT to lose weight until they had finished with me. So the diet is on hold for a few more days!!!
The most positive thing about Tax is the help from others who have had it. Many thanks one and all
Cackles
Lulu, I had 6 Tax and found 1-5 the hardest. No. six seemed easier, whether it was because it was the last one I don’t know! Certainly between 3 & 4 I spent most of the time in bed, if not sleeping then resting. Now 3 weeks+ past last one and fatigue and joint ache are the worst things, but I have lupus too and the symptoms are similar. Hang in there, how many have you got to have?
Liz xx
I’m having 6 tax and carboplatin… Think the SEs from carbo are minimal though although It can cause nausea but iv not had much of that… No 5 is due next thurs… Like a few of you I am feeling much more tired physically but not sleeping much even though I’m knackered lol
My joints aren’t so achy just now but ribs on affected side are very sore and wondering if it’s where I broke m ribs about 12 years ago as broken bones do seem to be more painful… BCN says i have to discuss it on thurs when I go for chemo in case they wanna and me for a scan but only had one in sept and I was fine.
Lxxxx
Had my 4th and last Tax today, what a relief! No more chemo - I hope. I left the unit with a smile, well a grin actually, it was sad though saying goodbye to the Unit Receptionist, and the Chemo Nurses I’d had contact with as they were all lovely. Six weeks to build some strength in prep for my lumpectomy 23rd Feb, then I’ll be getting nearer to the end of the journey, not sure how many Rad’s I’m having.
Liz, you must feel relieved to not have to go back to work just yet. It’s not a good idea to return too soon as can set you back. You do sound tons better though than last month, and that’s so good to hear.
southernlucy, I’ve picked up from another thread that you are having Rad’s at the Bexley Wing, which is where I had my chemo and will be having my Rad’s. Is the Rad’s Unit well organised, are you kept waiting for long? Is parking free for Rad’s, it was for chemo and clinic appointments. Any tips you can pass on will be gratefully received. I won’t be starting Rad’s until around beginning of April, has to be a walk in the park compared to Tax?
Cackles, good to hear your energy levels are improving, I’ll be happy if mine take six weeks - I’m an ‘oldish lass’ too. Good luck with your diet when you do start, keep us up to speed with how you get on. I’ll leave it until after Rad’s, I think it a good idea as I can’t see me being very focused before then anyway, have you lost any weight since finishing chemo? I’m blaming most of mine on steroids, but maybe that’s unfair to ST Eroid??? Yes, I am more upbeat than when I first ‘met’ you, I think I was almost suicidal the day I made my first post and you, Supertrouper, Liz, Laurie, and a few others were so supportive and pulled me out of the doldrums. I don’t know how I’d have coped without that support. Lulu too has been a massive help with her informative help.
Well all you wonderful Taxers, take care and wishing you all improvements over the next while.
Catch up with you later.
Libby x
Hello everyone
I hope you don’t mind me posting on here every now and then? I’ll be having TAX x 3 after FEC x3 ( had first on tues 10th this week)
My biggest fear and phobia is nausea and sickness, which I’ve not suffered much with so far - does TAX make you nauseous too?
When I finish chemo it’s rads for 3 &1/2 weeks, then herceptin for 12 months followed by tamoxifen for 5 years - anyone else on this tremendously long journey too ?
I had a picc line put in on Monday and my arm is really starting to hurt since Tuesday’s chemo, guess it’s normal?
But due to the year of herceptin and not so good veins it was prob my best option!
Xxxxx
Morning all,
Libsue fantastic LAST ONE…on the up and up.
Wineoclock I think you will find the Tax doesn’t make you feel sick. You are fine for three to four days then the “tax Truck” hits you. A feeling of pure fatigue, perhaps breathless on exertion, wobbly heavy legs, the odd dizzy spell and a taste like cornflour or a lining like lard in the mouth…it all sounds awful but it goes . The best advice I can give is listen to your body and rest. It is a bit like flu …the back and legs ache and you can’t get comfortable. I just took to my bed and let the DVDs run. Food is tasteless but a GT or Scotch and Ginger taste ok. You will get a craving for carbohydrates. Cheese goes down well as does Lemon Drizzel Cake, chocolate and rice pudding. Copious amounts of Grapefruit Barley Squash and fizzy water saw me through the night. It you have GCSF injections your bones ache++ BUT this is the first Tax and you get used to what happens and take pain killers as needed.
Later on your toe and fingers are sensitive to light touch. I found wearing socks in bed stopped the electric sensation that occurred when the duvet was touched . A pillow in the end of the bed kept the feet free.
It sounds worse than it will probably be. I remember spending a lot of time making cakes and apple chutney. As for painting your nails a dark colour. I did my toes but not my fingers both are fine but I think a toe nail is growing out .
You will get to love your Puc. They take time to settle but are worth it. I had a Hickman and I quite missed if when it went.
Best wishes for your treatment…
Cackles
Dear Wineoclock
Yes I’m on the same trip as you. I had my third FEC two days ago, starting Herceptin for one year in nearly three weeks and also Tax (one day after first Herceptin)and then a mastectomy, followed by radiotherapy and five years Tamoxifen (if spared and “well”). It seems a long journey, but I take everything they’ll offer me, what other possiblities do we have? I also have a PICC line in since 2/12/11 and it’s very good. I asked the chemo nurse on wed how long I need the PICC in for and she said probably only till chemo is finished, I wouldn’t need a PICC for the Herceptin if I have good veins, which I have. Herceptin is no trouble to the veins unlike chemo she said. The thought of going to the chemo unit every three weeks for another whole year from February is something else. I’m very thankful though my cancer appeared now and not a few years ago when Herceptin wasn’t available on the market yet. I see it as my possible life saver, a very important drug for us HER2 + girls.
Lots of love and strenght from Christine xx
PS Cackles thanks for the good description of your Tax SE’s, I’m scared of losing my nails, hate the thought of this very much. So hopefully this won’t happen to me. When I mentioned this to the Clinic specialist nurse who I normally see instead of the onc (don’t ask *I roll my eyes*) she said “you’re reading too much”
I just want to tell my finger nail story…I first read about nails coming off on this site around the beg of april last year… thought it was an april fools… well its not. I painted all nails ‘midnight blue’ and just kept adding more layers as it chipped, my tax took place over the summer months and i kept socks on all the time, (not in bed). My nails stayed healthy but I noticed the ridges,3 one for each tax. it was mid Nov when the top of my nails started to come off, that was the first ridge lifting, took about 2 weeks for them all to fall off ( not toes they seem totally unaffected) At the mo thew second And third ridgesa are coming off. As each layer comes of I have the new nail underneath… all grown up and waiting to shine. I had very strong nails before all this and this might have helped me keep them long enough for the new nail to grow under… basically if your nails do come off its not that bad, new ones are growing ( not like my boob!)And Tax in general well the 1st one was tough but when you know that you survived once you know you can do it again, and your body isnt so shocked by the effects for the 2nd and 3rd
Good luck all x
Just have to say, Wineoclock - great name!!!
x
Hi all present and past taxers
Now two weeks since last tax, taste mostly back, I just hated the lard/cornflour combo. Nails lifting from the top down about a third so far, nail beds look normal, toe nails seem fine. Catching the odd nail which makes me swear. Walked the dog (joyful Golden Retriever) yesterday, legs feel as heavy as lead on any incline and even brought my old pony in from the field and fed her to give my OH a break so things must be improving.
Libsue the radiotherapy at Bexley wing very effecient, planning took about 20 minutes and I went in early (info said to allow 2 hours) and parking is free if you can find a space with radiotherapy as well.
xxx
southernlucy, thanks so much for info, very reassuring. The Bexley Wing is fantastic isn’t it? Had my last chemo there on Thurs and happy it was over and done with, I left feeling privileged and grateful to have been treated in such pleasant surroundings by compassionate and friendly staff. Pleased to hear things are improving a little for you, it’s good you are heading in the right direction and I hope your energy levels rise soon. Know what you mean about heavy legs, mine feel like lead weights being pulled through a swamp. But, we’ll get there in time and have summer to look forward to. Good luck.
Day 3 post Tax, had my 1st injection of 5 last night and feeling dizzy today. I did sleep OK though last night, from 4.30am - 11.45am - a massive bonus as usually the St Eroids make me toss and turn all night. I enjoyed a lovely dinner last night cooked by OH, mouth still feeling clean so making most of food before chemo mouth takes effect.
Loving your new pic Laurie, how is your hair growing?
Hope everyone’s doing OK.
Wishing all a good weekend.
Libby x
Hi Libby
Wooohoooo last TAX for you! There is light at the end of the tunnel. I’m 8 weeks post my last one and I’d say I’ve been ‘back to normal’ for about a week or so now.
My brows and lashes seem to be taking forever to come back and I’m still pencilling in the brows. I did try to put on some false lashes but found it difficult and ended up looking like a bloke in drag!
My hair is coming back in a strange kind of way as described by others. Normally it grows like a weed. I did shave it after my first FEC and again after my first TAX as even though it had started to grow, it was still falling out. I have about 1/2 inch of owl fluff over most of my head which has joined up in places. Worryingly, the front hardly seems to have grown at all. It just looks stupid - like the cartoon character off the confused.com advert. Think I’d rather be bald! Longing for the day when I can ditch the wig and hats…
Had a scan CT scan at the Marsden last week and get results on Monday. Feel like I should be a bit anxious but I figure there’s nothing I can do about it. Hoping the mets have shrunk and I can get a bit of a run on hormones before I end up back on chemo.
Hope everyone is having a SE free weekend!
Laurie x
I am now over 8 weeks since final TAX and so far have lost 4 finger nails and will probably lose more. Finger tips are still numb and cold and I have pains in legs and hips especially first thing in the morning. Tiredness comes and goes but I am sleeping well at night. Hair on head is coming back - I shaved head for the last time on New Years Day and 7 days later had about half a centimetre of growth but some bald patches - today (14 days later) the bald patches have gone and the growth is all over - and I don’t need a magnifying mirror to see it.
I still have Rads to get through but have been looking at booking a holiday for the end of May - somewhere warm and relaxing.
So happy to see that this thread is helping people get through the dreaded TAX - I read it every day.
Keep smiling - and remember…This too will pass
Hi Laurie, it’s encouraging to know you are ‘back to normal’ after less than eight weeks post Tax. I remember how you suffered during chemo so great to hear you sounding more upbeat.
If your hair does look stupid (but bet it doesn’t) at least it’s growing, and 1/2inch sounds good to me.
Hope you get a good result tomorrow, Laurie, please let us know.
Tax S/E’s have visited me, hope they bu**er off soon - don’t some visitors know they overstay their welcome! Unable to enjoy my food, feel dizzy, not sleeping, peeling skin on feet, sore fingers which drop everything, chemo brain etc, but, hopeully in a few weeks the cumulative effects will have abated.
ST, your hair sounds to be growing well too, are you still applying Emu Oil? I’m trying Castor Oil and my eyelashes and brows are growing back, hair not doing so well…maybe about only 2mm. Pleased to hear you have a holiday to look forward to.
Hope all had a calm weekend.
Take care.
Libby x
Bumping thread for Libralady.
Laurie I really wish you good results from the scan!!! I do think of you often as it must have been so hard when you got your DX, hugs to you.
I’m due to start 1st Docetaxel (after 3 x FEC) two weeks today. I kind of sailed through FEC, yeas some SE’s like sore throat, furry mouth, no taste, bottom issues (the worst SE to be honest) and quite a bit less energy now, but I’m DREADING Tax, just because of the sore mouth / throat.
Christine xx
Hi Libby - yes I am still rubbing Emu oil into my head before I got to bed at night and am pleased that my hair is coming back slowly but its there! Holiday is booked for the end of May - Rads planning week tomorrow and boob replacement fitting next Tuesday.