Hello Again,
Will all three drugs I was at the unit from 9.20 until 4.20 on Tuesday - long day. THere was a delay getting started as they had all Bank HOliday Mondays patients to deal with as well!
Hi Bright, my periods have stopped now, at least temporarily, and I am getting loads of hot flushes. COld one minute, hot the next. Have just started taking evening primrose oil, hoping it will help.
Feeling very sick today with both chemos and the herceptin. Just about to have a lay down for a little while.
Take care all,
Snoogle x
Hi all,
like you had a very long day yesterday re 2nd dose of TAX…same problems re bank holiday back log. Hubby gave me my jab today and so far so good but am expecting things to kick in soon. Feeling a lot more positive now…had a really good chat with my onc health people yesterday who really put things in perspective…weepy days are normal, chemo is a shock to the sysytem but there are loads of things out there to help. They gave me a relaxation tape and studies show that in most patients it actually helps boost WBC. They don’t know how but it is good to set aside an hour a day with the phone off and a bit of peace and quiet.
Bright…I have hot flushes whilst on the steriods but they seem to go away after that. I suffered really badly from them all the time on FEC so it just goes to show how we are all different. Periods stopped after dose 2 of FEC but mine too had been a little eractic before DX so at least it is one less worry to have now.
Wigs…a necessary evil but don’t underestimate the effect hair loss has on you. Again this is a perfectly normal reaction and it WILL grow back.
Hang on in there girls.
Julie xxx
Good evening ladies
Thanks for advice on hot flushes - I’ll try the evening primrose oil. I had a really bad one this morning and it just felt so embarrassing to be out, as I was sure my face was bright red and covered in perspiration. So far escaped night sweats… but can see a time.
I have been using the cold cap - so still have hair. I lost very little on the FEC, but more on the tax. But as I have only one more to go think I should still have a full covering at the end. We do have a huge number of hairs - in the region of 1000,000. So even if I lose 100 a day, it should not make as significant impact as it might do.
I have a hickman line for chemo as my veins couldn’t cope, so had to go to hospital today to get it flushed. It is a 10 minute job, but when I arrived - they told me there was at least a 2 hour wait… couldn’t bear to stay that long, so rebooked til Monday. Came home, did some work and spent the afternoon making a goulash for dinner.
Have a good evening ladies.
Bright x
Hi All,
Day 3 after last EC,struggling abit,no energy or appetite,but I know I’ll feel better in a few days.Going to LGFB afternoon next Tuesday which I’m looking forward to.
Saw my oncologist briefly & I mentioned my fears about starting on Paclitaxel,namely permanent hair loss,peripheral neuropathy and nails coming off.She said,hair loss would be more severe (only brows & lashes left anyway),but would grow back and the p.n.should only last 3-4 days after each chemo,didn’t comment on nails but said I’d be monitered carefully!
It was only when talking to the chemo nurse that I found out I have anti-sickness drugs,then have to wait half an hour before the Tax which takes 3hrs! She also said to stay indoors…didn’t say for how long…feel like I’m not being given all the advice or info I should,and if it wasn’t for this website and the valuable tips etc from you ladies I’d be even more in the dark.
Still feeling very apprehensive about Tax.
Lots of love,
Helen x
Hello Everyone
Well I did the necessary task and the hair is no more! It was actually such a releif and I have enjoyed trying out all my new headgear since. Have had a few moments when out where I feel everyone is looking at me with a knowing “she’s got cancer” look but after just three days I’m getting over it.
I’ve also had such a cold, courtesy of my 2 year old, and after a horrid time at A&E when my temp went over 38, I seem to be almost over it. I’m just a bit worried I may not be able to have my second tax on Monday unless it’s totally gone, anyone any experience of such a situ?
Helen, I’ve never heard of having to stay indoors, I certainly didn’t. I think there is alot of info/advice, sometimes too much, and most of it conflicting. I have picked up the best advice and tips from here, I also find it much more helpful to read the real experiences of others and take each day as it comes. The first few days post tax were the worst for me with aching joints and nausea then of course the hair loss but I have had at least a week and a half of feeling good just a bit tired. Good luck and enjoy your LGFB day.
Hope everyone is OK and you ladies who have just had tax number 2 aren’t having it hard.
Take care
Kirsten
xx
Good Morning All, Well that was horrible. Had third cycle last week with carboplatin added into the mix. Have had constpation, diahorrea, sleepless nights (even tho I took sleeping pills!), added to the bone aches and all the other SEs that I got the last two times and have felt the worst I have ever felt in my life. Will speak to oncologist when I see him next as it may just be adding in the new drug and may not be so bad next time. She says hopefully!
About going outside. I have been told about making sure I wear a high factor sun screen, don’t stay out in sun too long and also to keep a bald or balding head covered. Apparently the skin is more likely to burn. I also have experienced the difference in the attention I receive from others between wearing buff and wearing wig. I guess we just look ‘normal’ when we wear our replacement hair gear.
Sent off for my disabled badge last week and have got a key for disabled public toilets, although a friend says they aren’t always that clean! YUK!
Have a yoga class at the local cancer centre to look forward to later in the week. First time I will be going so hope I feel up to it.
Love to all,
Snoogle x
Hi All.
Sorry you’re feeling so bad snoogle, hope you pick up soon, good luck with the yoga.
Just to let everyone know, Tesco do a great factor 50 face cream, it’s a matt fluid and is only £3 a bottle, apparently keeps away the wrinkles too!
Keep going everyone!
Kirsten
xx
Hi ladies, hope you’re all okay and coping with the TAX. I’m over 5 weeks post last chemo and the SE’s are better but still ache for England and a bit breathless. Hair is growing a bit better now, altho eyelashes are still absent which plays havoc when I’m out as I look like I’m crying all the time! Rads is must gentler than the chemo, haven’t had any probs so far but slapping on aqueous cream like there’s no tomorrow! Wish everyone all the best and you’ll soon be done with the chemo and that’s a really nice feeling. love Pat x
Hi Pat,
Just wanted to ask you, when did your hair start growing? I know i have read on this thread earlier that some peoples started whilst on Tax. Was that true for you?
I lost most but not all of mine on FEC and the hair i didnt lose on my head seems to be growing but there doesnt appear to be any new growth and that includes rest of body. I hope i am being a bit impatient and that i need to wait until tax has gone out of system.
Linda
Hi Linda, I lost virtually all my head and body hair, apart from eyebrows and lashes while on Fec. Head hair started to grow on Tax altho lashes and eyebrows still absent! Everyone else tells me my hair is growing quite quickly now - 5wks post chemo - but obviously it’s not quick enough for me! It’s quite patchy but I can see a dark hairline now which has only been visible in the last few days. Remembering how traumatic it was when it fell out, no wonder we’re desperate for it’s return. My mum tells me hair grows faster in the summer - not sure if that’s right but nice if it’s true. When do you finish TAX? x
Hi
Penultimate one tomorrow so last shud be around 3rd June. I had very thick hair before chemo which is probably why i didnt lose it all, was left with a sparse comb-over in the manner of Bobby Charlton. Rather than shave it off, i cut it all very short and can see that hair has grown and stayed in place but cant feel any new growth yet.
My legs and arms are great, smooth as baby’s bottie, but i do have hair in a couple of other places (very sparse).
My hair always appeared to grow very fast so if it starts growing in July, should have a reasonable growth by Christmas.
Hair we go!!!
Linda
hi all - I had first tax last thurs and was fine till t time sat when I felt like I’d been run over by a truck…felt horrible yesterday and just came up and down the stairs on and off, very achey, mouth felt odd, headache, period/cystitis like pain, indigestion and then had jaggy pains in feet overnight…gerenarlly knackered! Have got dressed etc now and feel a bit more normal…could do with lots of space but have little un home after his op this week and daughter only going in for gcse’s - although they’re both very good and no trouble…yesterday I had this urge to go swimming and felt if I could get in the water I’d feel so much better…no chance with the hickman…mary x
Hello again mary,
I had the urge to sit in the Sun and i did but found out on this thread that u shouldnt really as chemo can make it easier to burn. However with a high protection factor and vitamin d to boost the immune system naturally why not? And not of course at hottest time of day. If its nice on Thursday, i will be out there.
All my symptoms similar to you, apart from jaggy feet thought they were all due to granocyte, maybe not.
I was told not to go swimming because of immune system and being honest, i dont fancy it with one boob as i think it might be really obvious. The mastectomy costumes are really expensive. I might create a pocket in one of my old ones at some point…Before Hols.
Anyway ciao for now
Linda
hang on there everyonr,
just to reassure you, six days post tax 2 and almost feeling human again. Mouth still yuk so food intake is a problem, nerve endings sensitive and still a little tired. Having said that compaired to last week that’s real progress!
Very wary after ending up in hospital last time round but off to my LGFB session this afternoon and really looking forward to that.
It seems that most of us are having similar symptoms just to different degrees. Going to get a second wig on Thursday as, although I will finish chemo late June, from comments here it looks like it will be some time before it grows back to any decent length. I lost most during FEC but kept eyebrows. Under Tax the head hair seems to be trying to come back but eyebrows and lashes have gone. I always hated my eyebrows as they are very thick and a real pain to pluck but now I am missing them. Hopefully the LGFB session will show me how to use an eyebrow pencil.
Hope the sun continues to shine for a few more days for you. I know we should all be careful but there is something special about feeling the warmth on your face even if it does have to fight through the factor 50!
Julie xxx
Hi Julie,
Was just wondering where you’re going for the LGFB session,as I’ve got mine this afternoon at Parkside Oncology Clinic,Wimbledon.
Hope I’ve got the energy to get there as I’m looking forward to it.
Love Helen x
Hi all,
Just to say Helen and Julie, i really enjoyed the LGFB session when i went. Mine was held at Barts and there were only four of us there and i got into the first one i booked into. The goodies bag is great and the beauticians are very knowledgeable. Enjoy it - we are worth it!!
I am leaving for my tax soon, bit peeved i have an afternoon appt but i should have checked when my booklet was filled in (had always been a morning before). The reason i am peeved is that i will have to travel home from London to Essex on central line tube in rush hour. Not much fun at best of times let alone worst. Will stress today to nurse that i do not want an afternoon appointment.
Julie, i keep too mulling over a second wig. There are some nice reasonably priced ones on internet but snag of not trying on. Although i like my wig (see photo) i think it is too tidy and would like one a bit more well messy. I will have to think about it…
I am finding tax hard mainly because i am still so tired which by end of week on FEC i wasnt. Even today my energy levels are way below what they were. I am also suffering from recurrent heartburn but i have asked for meds for that. I know i have only two to go and that is keeping me in good spirits…
Oh well, off soon for the find the vein competition, actually now FEC is finished they are starting to feel a little better…
All the best to everyone
Linda
I am booked into LGFB on 21st July, in fact my husband did the booking. I had prevously asked about it but all the dates they had available clashed with my chemo days and I got to the point of thinking I just wouldn’t bother. I have now made arrangements for a babysitter that evening as when he booked it my husband was told he should take me out afterwards.
An appointment for my next CT scan arrived in the post today. 19th May at 7.10am! I will have to find an early rising friend to drop the kids off with by 6.30am. 
I face it with hope of good news and trepidation of bad.
Love to all.
Snoogle x
Hi Girls,
Well that’s me completed a week after Tax no 2… feeling a lot better than the last one. stomach has been behaving itself, but the mouth is playing up a bit… doing my best with corsodly, Nystan and salt water… toungue is swollen and rough with spots, but as yet no ulcers(please No!!). Not looking forward to the next few days with temp. trying to eat all things good for white cells, doc advised me home made chicken soup, honey and 1000mg vit C every day… will be interesting to see if it works.
Kirsten, How have you settled into no hair? I’m quite used to it now.
Snoogle, Hope you’re starting to feel a bit better, you will enjoy the LGFB session, I loved it.
Linda, Hope all goes well with Tax today.
Julie, I can sympathise with the mouth… The taste thing is really awful and I hate not being able to taste my food, I can taste sweet things but Doc said to avoid if have thrush as thrush loves sugar!!! (Typical!!).
Mary, I had all the same symptoms as you first time round but they have been much milder 2nd time round.
Does anyone have a Maggie’s centre near them? I think they are great. If anyone’s got one they should try… wonderful people and lots of support.
Well keep well ladies
Hugs
Fiona xxxx
hi all,
Tax went well and i have two days to look forward to before se’s kick in. I am prepared for them which makes me think they wont be as bad this time. Fi, are you not on the marrow booster jooster stuff like me (granocyte)? Hate it but it does keep the white cells and neutrophils high. I like manuka honey, thats supposed to work wonders and mixed with lemon juice and a bit of ginger in hot water tastes pretty good too. Interesting about vit c as i have seen somewhere you shouldnt have it during chemo because it works against it. I think that was an American site i saw that on and could be just a theory… I think i read far too much, i have even been trying the flax seed mixed with cottage cheese (on the American equivalent of this site) because it is supposed to fight the cancer. I figured i like cottage cheese and cant taste flaxseed so might as well try it. Shouldnt do any harm should it?? Will probably find another site saying it does. i really should stop it!!
one more day of steroid madness to go!!!
Linda
HI ladies thought I would chip into your gang. I’m having taxotere too , had my second one last Friday so just startig to feel a bit better. Has anyone else got a gross white tongue…I cant bear it…its bad enough that all food tates of cotton wool you shouldn’t be repulsed by your own body!! Having said that that is pretty much How I’ve felt during this whole experience. I feel so fat and bloated I dont look anything like me…none of my clothes fit and I dont want to go out and spend a fortune when I’m not working!!! The lack of sleep and bloating from the steriods are the pits…have any of you girls any tips. Seems daft to drink wine when you cant taste that either so no point trying to drown sorrows!!! Are you all being given automatic anti biotics and anti thrush pills ( 2 weeks worth) after each tax as I am??? Is anyone’s hair growing back…seems like some people stop losing and start growing during tax?? I’ve got daft cold cap hair…not sure it was worth the bother as I think it makes me look old and ill. Anyway ennough of my self pity and probs would love to chat etc to you all
lallyxx