Hi All,
I am starting chemo today an am very nervous. I am having 4xTaxotere.Just thought it would be nice to share our thoughts etc and keep each other going.
Love
Brenda x
Hi Brenda,
I’m a bit further down the line than you as I’ve already had 4 Epi/Cyclophosphomide, but am currently on 4 x Taxotere with number 3 on Wednesday, so perhaps we can keep each other company through the taxotere bit! I know from reading some of the threads that Taxotere can sound quite scary, but everyone reacts differently, so I think you just need to see what it is like for you. It is hard when a side effect starts as you tend to think it will last for ever, but often things come and then pass quite quickly. One easy tip you may want to follow immediately is to start taking Manuka honey, as taxotere can give you a sore mouth and seriously affect your taste buds. There is a separate thread about it on this site, and I am a new convert, but it seems to work for me.
Good luck for today - let us know how you get on.
Best wishes,
Julie
x
Hi Julie,
Thanks for replying. Hope the first part of your treatment was not too bad for you, I know people have different reactions but I like to prepare for anything!!
Where can I buy Manuka honey? Do you just take it from the spoon?I will definitely have some in,just in case.
Will look forward to your company, hope everything goes well for you on Wednesday.
Love
Brenda x
Hi Brenda,
You can get Manuka honey from health food shops, although it is pricy (can be £16 for 250g!). You need to look for the UMF factor and I was recommended for chemo to choose UMF 15+. I have no scientific proof that it works, but it makes me feel better and even if it is psychological I’m happy to take that! I have a teaspoon a day, straight from the spoon, but other people rcommend it spread on toast or in hot water with lemon - if you type Manuka in the search box here there are some threads which discuss it.
Good luck!
Julie
x
Hi Brenda,
I start chemo next monday so not long to go. Not fully sure what yet as going on the tact2trial - find out this afternoon.
hope your first chemo goes as well as it can!!
finger crossed.
I start 3 x FEC/ 3 x Docetaxel on Friday 28th - I have mixed feelings about it, hoping I will cope quite well, but then heared stories which say otherwise - the hospital thinks I will be ok as I am young - not sure that makes a difference - I guess its the unknown - once the 1st one is over with I will have more of an idea. I just keep thinking after the first 3 are over I’m half way there!!!
The annoying thing about it all is that I have alot of Xmas and Birthdays comming up in the next few months and I am keeping everything crossed that they will fall on a good week, and that I don’tpick up any infections if I am able to go - I guess people will just have to understand! and I’ll have to make it up when I am better!
Hi All,
Well I went for 1st chemo and feel fine as I couldn’t have it! My onc forgot to prescribe steroids on Friday so got them today and have to go back tomorrow.
I am really devastated as had thought about it all weekend and felt prepared today. I will probably be awake all night now as steroids apparently keep you awake.
Brenda x
Oh Brenda, what a rotten start to your chemo experience!
The steroids do keep me awake a bit, and also make me hot and flushed, so don’t panic if that happens to you too.
Hope all goes well tomorrow, and best wishes to Mandy and Snottrags too,
Julie
x
Well done on starting the thread Brenda!
Sorry that the unit messed up for you - after a w/e of being anxious it’s not at all helpful is it! Like Julie I too had a red face and sometimes a racing heart too. I also stayed awake at night - I’d go to sleep ok but wake up at about 2 and that was it. In the end I decided to simply not plan much for steroid days and rest up then - though I had so much energy that didn’t really happen either!
Anyway, tomorrow shouldn’t be too bad - the drug doesn’t hurt going in and you’ll have some strong anti-emetics to help with the nausea (well I did, but I had A & C too - you’re having C, so you may get it) and anti emetics to take home too. I took them regularly even if I didn’t feel sick and never did really.
If you get nauseous try sucking ice chips until it passes and drink very cold water.
Take care and think about beating the C!
Love Td x
Hi Ladies,
Thanks for your support I am OK about tomorrow I just wanted my first ‘experience’ over. I am waiting to take next tablets in about 10 mins.
I have had palpitations already and wondered if it might be the steroids. Because I didn’t take first lot until 4.15 at the hosp I cant take them until
8.30 so expect to be awake half the night.
Still tomorrow is another day and I am determined to get through this.
Love
Brenda x
Hi Brenda, Julie, Mandy & snottrags
Hope you are all as ok as you can be in ths situation and still finding something funny every day. I’ve been saughing today painting christmas cards - a mate of mide thought it would be theraputic to do this so bought an acrylic set in The Works for us to have a go. Well, I have to say it threw a whole new light on my 4 year old’s efforts! She is truly an artist; I am not!
Did you get any slep last night Brenda? Steroids + expectant waiting are not the best way to go into the night, but hopefully you will at least be so knackered today that you will sleep tonight. Don’t forget to DRINK plenty, even if you feel sick.
How many Tax have you had Julie? I think you’re coming up for number 3? Is your hair coming back at all? I have a ‘five o’clock shadow’ effect, but i’m quite proud of it… though I’m not so happy about all the other lady hair coming back!!
Mandy - you’re starting your chemo the same time as I’m starting my herceptin - I will have 18 doses 3 weeks apart, so that accounts for the next year! Hope my veins will hold out… I have to be an inpatient for the first one - quite looking forward to a day of no kids & no cooking!
Snottrags (think we may need a first name here - maybe the tissues are needed less now than at first registering with the site!) - when will you know which arm you’re on? My mate is on the extended arm, and has found it not too bad at all…
Stay warm everyone! I may have to put a hat on top of my wig if this weather carries on!
Big love Td xx
Hi Ladies,
Hope you are all Ok. I believe you are right Td you can find something to laugh at each day, I am sure your 4 year old keeps you laughing!
I eventually had my 1st TAX yesterday and all went well. I didn’t sleep much the night before but even less last night! I am sure the steroids kicked in quickly.
I haven’t felt sick,taking anti sickness and drinking loads water.From what I’ve read the side effects will kick in big time around Friday??
I am waiting for appt for Hickman line as had bilateral surgery,although node involvement on one side and had gland removed and all clear. They used my ‘good arm,’
yesterday but my onc is not happy to keep using it as I am waiting for bone and CT scan,so more injections, I am really dreading waiting for results of scans but my BCN has convinced me to have them or I may regret it in future.
I have been really positive throughout this but finding it hard at the moment,probably because I am spending most of December at the hospital! My OH works away Mon-Fri and I celebrated our 30th wedding anniversary yesterday having chemo!!
Well should have a laugh today as going for wig,my daughter is coming with me I think she may try to convince me to go totally different colour/style etc so think we could be a while!!
Sorry to have off loaded today,must be the lack of sleep and all these thoughts going round my head at 3 this morning, I’m sure you know how it feels.
Lots of love
Brenda x
Brenda, glad your experience was not that bad after the mess up. what a bummer having to celebrate your wedding anniversary in chemo. hope you can do something nice for the weekend. Chemo nurse said champers is best for sickeness!!!
waitingangel, I got arm 1 too - 28 weeks!!! takes me right upto the end of may and thats if I 'm not ill. I went for the pre-chemo talk today and they took the bloods in readyness for monday morning. They have suggested I get the wig ASAP as they try to match to your own hair! not sure going to use it but if its free worth a go and gives me options.
one downer is epi is not good with red wine so my birthday night celebration will be a sober occaison - for me anyway!!!
hope you get a good nights sleep, I’m not sleeping well now - can’t imagine what it will be like when I get the steriods!!
take care
vicky.
Vicky, don’t worry champers on ice although an nice nightcap would go down really well tonight aftr 2 nights 'broken ’ sleep
Hope you find something to celebrate your birthday night maybe white wine spritzer? Possibly without the wine!
I went for wig today which was fine it is ordered and get fitting next week,he has promised to make me look more glamorous,really didn’t
want to ask him who paid him to say that
Melly, what treatment you having? Best wishes for Monday
love to all
Brenda x
Hi everyone,
Congratulations on 30 years Brenda! My husband and I will been together for 19 years tomorrow. Glad to hear that the first dose went ok, despite the mix up with your steroids.
Good luck for for your upcoming treatments Mandy and Vicky. What stage are you at Td?
I’m just back from taxotere number 3 (and trips to John Lewis and T K Maxx - I’m pumped up on steroids and full of energy, so making the most of it!)
The frozen gloves were painful for my fingers again, and I don’t particularly enjoy sucking ice cubes for an hour too, but if it all helps then I guess its worth it. I’ve splashed out on Manuka honey 20+ and am upping my dose to 2 (goodly!) teaspoons a day in an effort to reduce the mouth problems that have plagued me in both previous cycles. Td is right about drinking - I struggled to find anything good to drink (couldn’t manage fruit juices, canned soft drinks or coffee and even water tasted slimy with an unpleasant aftertaste) so I just sort of lost interest in drinking and then ended up headachy, I think through mild dehydration. In the end I found weak squash was the least unpleasant thing to force down!
The hair thing is really weird - I have a soft, downy covering of about 1/2 cm all over my head now (which is partly grey but also looks very WHITE - hang on, I’m still in my forties, so what’s with the white???), but my last few eyebrows are falling out now. I’ve read that you can lose hair after number 3, so I’ll let you know what happens.
Getting really excited now as my family are coming back next week. We live overseas, but I am back in the uk, living alone in what is normally our holiday house for the duration of my treatment. Can’t wait to see my husband and children (14,11 and 9) again. Mind you, I’m not sure what my husband will think of his taxotere wife who now goes to bed with her feet smothered in E45, tissues at the ready for the runny nose and eyes, buff on the head to keep out the cold and legs propped up on a pillow to reduce the swelling in her ankles! Hopefully absence has made the heart grow fonder (and I can keep the lights turned off!!)
Lots of love to you all,
Julie
x
Hi ladies,
Seems like you will have spent anniversary on your own Julie,my Oh works away Mon-Fri so he was not here for ours. We were supposed to be on a cruise but I spent the day having first treatment ! Hope you have a celebration when your family comes to the UK.
Feel really tired today, had loads of energy yesterday, went for wig and shopped for four hours,think I am paying for it today. I bought some Manuka honey and have taken some this morning, mouth is Ok (touch wood) but thought would start and take it.
Melanie, I am having bone scan next week and waiting for CT scan, I too am really worried but it does appear to be routine to some areas.
Have a good day
Brenda x
Hello all
It’s 3am on friday and I’ve no idea why I can’t sleep as I’ve been sleeping fine since the chemo finished . Maybe it’s the prospect of starting Herceptin today - got to be at the hospital by 10am and will have to stay until 8 hours after infusion finishes… but I don’t feel worried about it so am suprised I’m not asleep!
Sounds like things are going ok Brenda - fantastic! You’re right, the symptoms get a bit more ‘serious’ after today, but for me it never all happened at once and therefore was copeable. Bowels seems to be one of the big issues with any chemo, but at least tax doesn’t give you the wind that epi does!!
Julie (& all) - I’m finished TAC x6 now - last dose 7 weeks ago - and am having rads and herceptin. I had widespread DCIS high grade, a grade 3 tumour and 4/14 nodes. I’m ER- PR- and HER2 +. I had a mast & LD flap recon which is not yet finished - implant to go in sometime next year when rads settle down. I’m 45, have wonderful husband (last one wasn’t!) and 3 children, 16,13 & 4. I work as a community midwife but am off at the present time. Life is good!
Vicky - sorry about the red wine!! I haven’t been fancying ANY alcohol at all since starting chemo - and I’m still not really.
Hope your wig experiences have been good. I have a lovely kiwi head now - it’s taking it’s time coming back… but the plus bit of that is that there is still no sign of any other lady hair! except I wish my eyebrows would stop falling out and start growing again! I have 3 wigs now, and like them all - they’re all dark brown but vary in length. One of them is a ‘fringe’ which goes all around my head - it was great for the summer to wear with hats and scarves - hats mess up wig hair and it begins to resemble Barbie hair. I’m getting a second ‘NHS’ wig - it’s a hothair wig like is sold in Debenhams so great quality but free in Bristol - Iknow some Trusts charge an orthotics charge…
I could go on here, but I must go to bed as it’s now 3.30 and I have to be up to orchstrate the school run in the morning - Harry has his Mocks and if he misses the train I’ll have to drive him to school and that’ll really mess my day up!!
Have a good w/e all!!
Love Td xx
Hello all,
Seems like insomnia is rife just now!
You do sound to be coping well Brenda, and as Td says, the side effects come and go and not all at once. I know the prospect of bone scans and CTs can be scary for you and Melanie, but for me I have always wanted to know as much as possible about my cancer, and was very relieved to have a clear CT report (haven’t been offerred a bone scan).
Funny how treatments vary from area to area. I got a wig on prescription, and bought another myself, so I have one shaggy dark blonde one and another longer reddish one, both nothing like my own hair when it fell out, which was long and (dyed!) blonde. I do enjoy ringing the changes, and the looks of surprise when people don’t recognise me! I haven’t come to terms with headscarves (they just seem to shout “cancer” too much for me), but I do wear hats and buffs. Looks as though I’ll be carrying on with these for quite a while as white/grey regrowth after the EC chemo is now falling out! Still, showeres are so quick and easy these days (although the water goes in my eyes much more due to lack of eyebrows and eyelashes…)
My cancer is lobular, and was quite diffuse when it was discovered - 2 tumours and 2 positive lymph nodes - so I went straight onto chemo, and will have my surgery in January. I’m interested to hear how your Ld flap reconstruction is pogressing Td, as that is one of the options for me. All a bit up in the air at the moment, as we’re not sure if I’ll have radiotherapy or not and so whether to go for immediate reconstruction or wait a while. The good news is that I had another mammogram and last month, and both tumours (one was 6cm) have virtually disappeared with the chemo - so it is all worth it!! Won’t change the treatment - will still need full mastectomy, but the outlook is apparently much better for me now.
My children are so excited about coming home - we haven’t had Christmas in Britain for 10 years. The youngest two particularly are desperate for it to snow, I’m just desperate to see them all.
Well I’ll go any try to sleep again (5,20am now), but best wishes to all - and perhaps sometime we could all share some f that champagne you were recommended Vicky, evey if just virtually on-line!
Oh, hope Harry’s mocks go well too - my three children (and husband! have just sat their grade 3 piano exams, and we are waiting for their results on 13th Dec.
Love to all,
Julie
x
It’s saturday morning and I slept well last night! The Herceptin ( I feel it warrents a capital H as it’s so expensive - 32k for a years course!) was fine, no side effects yet… I’ve got CT of chest and abdomen today, and like you Julie haven’t been offered a bone scan but may ask for one…
My ld flap went really well. (if you’d like to see photo’s Julie, PM me yr email address!) I had all the ‘ground work’ done at mastectomy and will need it finishing off when the effects of the radiotherapy are finished (sometime after about May). Do consider that if they do a ‘skin sparing mastectomy’ then you will get a much better result ultimately without visible scarring when dressed… worth discussing with yr surgeon…
Hope you are all managing - you are in the worst few days now Brenda - it’ll get better soon!!
Keep drinking!!
Td xxx
Hi all,counting down the weekend to monday!One good thing getting my chicken fillett fitted aswell on monday just before.No more sooftie and looking lobsided.Melaniexx