I had to go back to hospital yesterday when I told them I had been having a stitch like pain/niggle for the last week in the opposite side. Very nervous but after various checks inc a water test it was confirmed I have a upper urinary tract infection… back on anti b’s but my runaway brain is relieved. I have been told to be more positive, think I may need some help with it so going to purchase ‘Emotional support through breast cancer’ a book a lot of ladies have recommended on this site.
Funnily enough I mentioned the clothes/sick thing to a nurse yesterday and she gave me the technical term for it, I had it after pregnancy as well as I was that sick then as well. She did say I can ask for the best stuff, the name began with an A but think its the same as emend, I think emend is just one manufacturers name. I was told I woukd take it one in the morning and evening for 3 days after treatment.
I did the shave last night, now a grade 1 although patchy as where its missing totally is visible, I cried but feel much better than the clumps falling everywhere. Was scared what the kids would say but they have been fine. I have a wig and a couple of scarves for indoors, sleepcaps for bed. Im a fussy customer, need matching nighties to match the sleepcaps!!! My hubbie just smiles at me and looks as into say shes crackers but I love her !!
Well next round Friday so start the dreaded steroids tomorrow… hate them, but at least no coldcap.
Kirstie hope you are feeling better after your fall, just brings every emotion to the surface, hope any pain has eased.
Hi ladies, at least your mind not racing too much loulou1262 now you know the problem! And yes I was also told to stop " over thinking " by my chemo nurse- easier said than done!
Re: sick meds: I was told for 1st fec most people are started on a " base line" of drugs and then see how they are; then they change accordingly
My 1st chemo I had metaclopramide, ( which made me feel worse!) ondanestron and steroids and I was sick and felt very sick for about 5 days
I told oncologist and she immediately changed me to Emend , as well as the ondanestron and also cyclizine to be taken if needed- Emend made a huge difference- I wasn’t sick at all and lot less nausea too, I found if I ate small sweets like wine gums it took it away! I went back to work part time 4 days after my 2nd session
I was told Emend is very expensive and not always available in all areas so I think you have to ask for it !
And yes Rosie I think a night thread would be quite busy as I think we are not alone in trips to loo and insomnia!!
Louise, I found most of my hair came out 17 days after 1st session so now have wig/ sleep caps etc, it is upsetting but once it has gone I think in a strange way you just get used to it, although I cannot keep it uncovered for too long!! And yes I am with you on matching sleep caps!!
And a bizarre question - when wearing your wigs ladies do you have them over your ears or behind them- I have quite a short bob wig and tried both- but not sure what’s best- behind ears is more comfortable but doesn’t feel as secure, over ears digs in more secure but uncomfortable!! What a dilemma and one I thought I would never be in ha ha! X
Loulou, you’re right Emend is the brand name for aprepitant. I had terrible nausea and vomiting the first cycle. Then I was given Emend for cycle 2 and it definitely made a big difference. Have to admit I still felt nauseous but was only actually sick once and most of the time it was like when I had morning sickness, in that although I felt sick I was confident that I wouldn’t actually be sick. Made a big difference to me, made me feel that the whole thing was doable.
Now feeling absolutely normal except for slightly sore soles of my feet. I wore my Birkenstock sandals the other day for the first time since the autumn. I think the skin has worn away and now my feet feel tender. At the moment that is my only gripe, so feeling quite blessed. Hope I’m not jinxing myself saying that!
Re the going to the loo. I’m the same. The first few days I go to the loo loads. I feel like a cow when it pees! It just seems to go on for ever.
I really admire you ladies who are working or looking after pre school children. My kids are 10 and 13, so fairly easy to manage. I just have to sort out some lifts for them for the first few days after the chemo.
Hi all. Sorry been a while. I am generally ok very tired now with cumulative chemo managing to work 1 week in 3.
Starting to read up / look ahead / plan and prep for tax I will have my third fec next week then 3 weeks after this I will be on tax
I am planning a list of questions for the oncologist as I am concerned over new side effects and also how the body reacts on changeover time
Have any of you either moved to tax or is anyone like be about to change over and has anyone been given specific advice etc. concerned over nails / pins and needles and weight gain. In general seems a tougher drug. Also if I can keep working.
Hi there, I haven’t posted on this thread before but I an due my second fec on Saturday. I haven’t suffered anywhere near as badly as some of you ladies,but on Saturday my hair started falling out in handfuls. There were lots of tears. For a few days I have been to scared to brush it because I wanted to keep some for my sons birthday party. However was left with a mangled mess this morning and lost tonnes more. Can’t do anything with what’s left, but can’t bring myself to shave it off…how do you ladies find the courage??? Is there wine involved ?? Also can’t seem to feel comfortable in scarves, i feel as though i look stupid!
I too like the thought of matching caps, I can’t bear the thought of my husband or kids seeing my bear head… How do you manage???
I would also love to join the night thread as sleep is a distant memory since my initial referral.
I have stage 2 invasive ductal carcinoma with lobular elements too. I also have positive lymph nodes. I am having 6 x Fec-d prior to surgery with Herceptin too.
sorry for ranting!!
Hi Rachel 01, me too! I also have grade 3 invasive ducat land Her2 positive! , I just waited until most of hair fell out as couldn’t face shaving it either, I then cut remaining wispy bits off with scissors! I haven’t shown anyone my bald head except my husband, but also sleep in sleep caps( hats for heads on line) have great pretty Paisley print ones!! Also like you having chemo before surgery.
And same as lots of other ladies on this thread I too have 3rd fec next week, followed by change to tax which I am also dreading, some ladies have said fec is much worse for nausea and in general, but I suppose we will all find out soon!
Hope everyone is ok today and Kirstie hope your leg isn’t too sore today and you are a little better .
Hello ladies,
Louise3721 you are hilarious & totally agree with lots of your posts! When I had my head shaved I just thought well its not forever & its not my right arm being chopped off! Hope it goes well for you Fri - I joked with my hairdresser & said don’t go inscribing something rude on the back of my head will you?! So hope that doesn’t happen to you! One of my chemo nurses is all prim & proper & she kept saying FEC all the time - I was trying not to grin & look immature!
Kirstie77 I hope you are back on top form! Don’t blame you for having a blip! What with how things have gone for you! Like smokeclouds said - we were like this a few wks ago & all the ladies in the support group I went to said they got ‘chemo blues’ on 2nd & 45th cycle so totally normal on top of your injury etc!
I am also changing to tax for 4th cycle. One lady has said the same as just read on here - you don’t get the nausea but feel like you’ve got the flu & it doesn’t kick in straight away. Also get pins & needles in fingers so hard to do things up,& will prob loose eyelashes & brows.
Sorry to hear you have a uti loulou1262. Not nice on top of everything but at least you know what it is now. I hope you get the support you need to keep you going & feel more positive.
Its funny how the ones on metroclopramide has also found it awful! I am on emend & ondamestron also so hopefully cut the nasty one out for next time!
Good luck for tomorrow rosie14, will be thinking of you. Sorry I meant to come on here & tell you about the her2+ thread when I found it a few days ago!
I am booked on a lgfb course next Tue so looking forward to that:). Talking of nice things to plan ahead for - there is a website called willowtree foundation? Does little trips for ladies in our situation apparently xxx
Hi ladies sorry to read done if you have been having a tough time I really hope things get better. I feel a bit oif a fraud as apart from z nausea a couple if days after chemo and constipation I am doing fine still and have continued to work full time throughout and have fec 3 next Wednesday. I am really tired and keep waking with hot flushes every couple of hours but manage to go back to sleep straight away afterwards. Rachel sorry you find yourself here, I started losing hair on fec 2 day 14 and it had all fine by day 20, I have a £300 wig I can’t be bothered to wear and wear scarves for work, I walk around the house bald in front of family and friends including friends of my children, I cant be arsed quite honestly and would happily go to work like this but the some of the 500 odd people in my building are struggling to make eye contact with the scarf as I hadn’t made my diagnosis public knowledge firvgheclatt 4 months but now there’s no getting away from it. I completely understand your feelings and you have to do whatever works for you and your family, I’ve found that with mine thst me not making a big deal of it has not made it one and yes there was wine involved in my shaving and we tried to turn it into a bit of fun with giving me bowl cuts and Mohawks before the final shave. Xx
Bless you jackie09,like rosie14 says she will be back before you know it! I don’t like being fussed over like Louise but its nice to have their company isn’t it. I think all of this makes us more emotional out of the blue generally even if nothing really triggers it so the fact that your mum has just left is prob the icing on the cake. Hopefully you will feel better when she gets home & you can give her a ring.
I kept my head covered the whole time at first too - was determined my hubby & daughter would not see my head at all! But my daughter walked in the bathroom one morning & didn’t bat an eyelid & my husband see’s me now & points out my new patches! I had really long,thick hair before but its surprising how you do just get used to it. Happy birthday for tomorrow - I hope you get spoilt - you deserve it x
My positive is that I’m getting my wig tomorrow ready for my girlie Chinese & night out sat night - so if I don’t like it we will be staying in & playing twister! xxx
Hi rachel01,
Im sure this forum will help you out. We are all different when it comes to losing our hair. For me they told me when I was DX end of Jan that I would defo lose my hair & kept reminding me so by the time I started chemo 2months later I had got my head around it & had already decided that when it started coming out I would take control & shave it rather than leave it. It really wasn’t that bad - I had it done in a private room at my hairdressers & my best friend held my hand. We to had a giggle like suzie68. I know we all see hink differently but I just kept reminding myself that its not forever & kind of the least of my worries with what’s going on. I donated my hair to the little princess trust (wigs for children). I never just wear scarves on their own - I wear either a black or navey plain cotton hat,then tie a little scarf wired hair tie scarf (that’s in fashion at the moment) or a little flower from Claire’s accessories - whatever matches my outfit at the time. Have you heard of the ‘look good,feel better’ courses? There are lots of ladies on here that will tell you how helpful they are! I’m going to one on Tue. I am also her2+ so will be on herceptin also,there is another thread on this forum about that. Glad your first chemo went well. Good luck for round 2 sat:) xxx
Jackie 09: good morning and happy birthday! Hope you are a little happier today, enjoy your day and hope you can do something that makes you happy!
Morning to everyone else too- went late night shopping with my mum and sister last night( braved the germs as knew it would be quiet!) it was nice to just do " normal " things, amazing how tiring shopping for clothes is tho!!
Eam28, sounds like you have the scarves etc sorted- they sound really pretty, enjoy your girlie night out on sat and hope the wig is ok!
Jackie09 happy birthday to you hope you have something lovely planned. I bought some lovely scarves from Annabandanna on the internet they are v comfy and v reasonable x
Happy Birthday jackie09! Hope you have a briliant day! If your struggling - just think this day next year you will be looking back on all this s**t!
Thank you love wine,yeah my district nurse comes every week & says it looks really stylish & better than real hair! I was speaking to a lady yesterday who has really short hair anyway by choice & said she would wear them herself!
Hope you all have a good day,will let you know how I get on with the wig. Xxx
Hi wildpurl,glad you like your wig & your hair is looking pretty nice still. Hope work goes well for you today. I am day 15 of 2nd FEC also & hair was coming out as of yesterday (same point as last time). I feel totally normal now too. Think I will have to have a little play with my wig. Its a bit darker than my brunette col & got a fringe which I’m not used to but most people like it. But I like the length & people have said it looks natural. The other one I tried was curly & a copper color so really didn’t suit me! The other one hadn’t come yet & that was also curly so just went for it with this one as have already been waiting 5 weeks! Will only wear it for nights out anyway I think.
Hope you are doing well rosie14? Thinking of you xxx
Hi rosie14, hope you didn’t stay awake too long last night: how annoying for you! Eam 28 I am also on day 15 of FEC round 2 and also feel normal! Bit annoying when you know this time next week we will feel crap again!!
Wild purl and eam28 glad your wigs are sorted,I have been wearing mine now fir 2 1/2 weeks and it’s amazing how quickly you get used to it.
Hope Jackie you had a good birthday and Kirstie hope your leg is healing ok?
And everyone else too hope everyone is ok , I like your idea of a positive post Louise for each moan!. My one is I still have eyebrows and lashes( but a bald head!) x
Hair going today as I said before it’s no great loss. Good news my friend attends steam punk conventions you need to Google it words can not convey . She is leaving me long SILVER curly wig Yipee Barberella on steroids or a fat lopsided mermaid depending on mood !
xxx