Rooner - I found my feet were the worst with T. They were fine for cycles 1 and 2 but I could hardly walk for one day about a week after 3rd T as the skin on the sides of my toes went sort of raw, so hurt if the toes touched each other. I moisturised them madly and bought hideous toe socks to stop the skin rubbing and they are now much better. Hands were dry but not so bad. The rest of my skin I treated as usual, moisturised but not as much.
I always got a furry white tongue for the first week - which I thought was why food tasted so bad, but it went once I started the Fluconazole. Don't know if it was thrush or whether it was just time that changed my tongue back to normal (or semi normal).
At the risk of TMI - I always had constipation first few days, so was told to start the Movicol (laxative) either the day before on on the day of chemo "to get things moving". That helped for cycles 2 and 3.
I also found my aches were in my legs, especially thighs - have never been sure if the chemo or the bone marrow injection (can't remember the name of it). Hideous while they lasted but mercifully relatively short lived. I don't want to sound flippant, I know what you are going through and want to reassure you they do pass. Hang on to that thought. Curl up under blanket, with cats etc and get well.
Rooner - I just had some dried pineapple. Amazing! Tasted exactly as it should! I might be picking the frozen out of the 'yellow smoothie mix' later.
Cookie - yes, I was aching yesterday and the day before (days 4 and 5), mostly just below my knees and above my ankles, although a bit in my thighs too. Wasn't sure if it was the T or the filgrastim (which is new for me this cycle), but it's just a niggle today so guessing T. Painkillers and a microwave heat bag helped me.
Evie - interesting that you had a sore throat too, seems to be quite common, which is good in a way. I am checking for white stuff on my tonsils but no sign, just a furry tongue.
I am keeping notes of the SEs so I can go through them all with the onc before the next cycle and see how many more drugs I can get out of him *sigh*.
Had a horrible nights sleep last night too, kept needing the loo despite thinking I hadn't drunk enough yesterday. Do steroids make you hold on to water? Because I think they let go... I know they can make you puffy.
Busy thread again. Sorry to hear the T effects are kicking in. As you have all so kindly advised and reassured me about FEC may I offer my T experiences to you. Days 4 and 5 were always the worst for me so far as the aches and general yukness were concerned. Hang in there and they should ease and go after that. For cycles 1 and 2 I felt much better generally from day 6/7 onwards.
Taste - the first week was the worst. I was just eating for the sake of eating, but nothing much tasted of anything. Taste started to come back for some foods after a week, but strangely enough sweet things didn't taste good (I guess my body teling me something!) I think I may have said that I developped an addiction to tartare sauce as that was one of the only things I could taste.
For all 3 cycles I had a sore throat and neck aches for some of the first week. The first cycle I actually had tonsillitis on top (and some strong antibiotics as a result), but I still got the sore throat for the other 2 cycles too. Again it just disappeared during the first week.
Fiddlercrab - thank you for your reassurance and good advice re FEC, appreciate that. I am taking WMJ's advice and not looking further ahead than today. My exciting day has been taxi driver for my daughter, then going out with her while she trains for Race for Life (I walked, she ran) and the highlight is a heating man coming to fix the heating.
I am out of sync with most of you as I don't have FEC til Friday - so am sending you all lots of get well hugs. Great photo Agarside - gorgeous cat/panther and onesie!
Mine are going too. Stuff tastes normal-ish at the back of my mouth but everything is weird on the tip of my tongue. Currently sucking M&S sugar free rhubarb & custard sweets which are OK so long as I keep them in the middle of my tongue. My own lips taste weird!
Cookiepuss: Frostie is actually quite small - we have a half Maine **bleep** "Jerry" who is much bigger, but he doesn't like me anymore... 😞 although usually a very affectionate cat! My DD2 has set up a FB page for cat lovers "living with cats" it was part of a homework and is all about our 6 cats!
Day 5 post chemo is Big Mac night!! the one thing that still tastes like what it is supposed to, I am still on FEC so hoping it won't be too bad on T, family will be gutted, only time I buy Maccy D's...Lol!
Have got some work done this am, now for NCIS...:-)
Lol I have the house to myself.... but being constantly "hassled" by one of my 6 cats... Frostie!
He never really took any notice of me before chemo, but now constantly by my side and wanting to lie on my chest... weird lol...
Yes, I've stayed at home. I am not allowed to actually go to work because of the risk of infection, so I am working from home when I feel up to it, and getting quite a lot done! I had plans for this week but I will put them off for a day or two. My work are pretty generous with sick pay but I am anticipating needing more time off when the surgery comes around, so saving it for when I need it (although I could have just gone off at diagnosis and no one would have minded, I'd have gone nuts though!)
I to had an awful nights sleep, but I really want to do something productive today so fire lit and on sofa in my "Snowflake" Onsie! I think it is my ears and sinuses, fluid seems to be moving about a bit causing the left side of my face to ache, think this was keeping me awake....
Ref sick pay, have a look at https://www.gov.uk/employment-support-allowance/overview details given to me by a fellow member on this forum, I put in claim for 1st Jan, only to find my emloyed employer (I am employed and self employed) decided to pay me SSP for 6 weeks, but it means I now have to redo the whole thing again, but should be entitled to this as well after SSP is finished...
Have a good day
I hope you have stayed home fiddlercrab, you definately need to rest. I had an awful sore throats and dry cough last week, but no temp so hoping you will be okay. I was assessed before my chemo and told it was viral, which takes it out of you at the best of times. So please rest. I too have dreadful wind, feel sorry for my OH, just keep saying sorry about that hun must be the chemo! Lol.
Running girl 53, sorry to hear you had bad night and your cold maybe returning. Sleep can be a bit of enigma for us all and makes the days long when you are not up to doing much. Hope you manage some sleep and enjoy a restful day. I know you are not complaining but I think it is awful you are no longer getting any pay when off sick, this isn't just being off sick as far as I am concerned, it goes way beyond that and no way you should have been feeling guilty. You ladies who manage to get into work whilst going through this are heroes.
Hope we you are feeling better today Jacquie48.
Remember ladies one day at a time, although it could be an hour at a time or even a minute, as things ( how we feel physically and mentally) change quickly for us all and for a variety of reasons.
Jacquie - Sorry you are still in hospital but at least they seem to be making progress, the scaly peeling skin on top sounds nasty.
I didn't make notes and now I can't remember who else I wanted to reply to!
I attempted a short walk yesterday but the weather was miserable and fiddlerkid was whinging, so I gave up and went back to my heat pack on the sofa. Then I cooked a curry with homemade naan/roti/bread. Not sure if the terrible wind I have had all night is the result of T or tea...got some digestive 'issues' too... I had a sore throat yesterday (can't remember if I said) but temp stayed normal so they didn't want me in. Feels a bit better today but will continue monitoring temp. Might sign myself off sick today and watch a film or three.
Evie - I won't deny FEC was hard for me, but everyone I have talked to says that either one or the other is hard for people, so if T was hard for you, it might be that FEC is not (although I am sure there are people who sail through both and people who struggle with both). Take each cycle as it comes and allow yourself to be ill.
I am booked on a LGFB session in March (it's a week after T2, so that's assuming that I can make it there). I am mostly in it for the freebies! I also have an 'education and support' session with the BCNs at some point soon. Not sure what to expect from that one.
Have a a good day, everyone
Hi Jacquie - good to hear from you, but obviously sorry that you are still in hospital. At least they have an explanation and are treating it - really hope the antibiotics work quickly for you. The chemo itself is punishing enough without added extras like infections. Also hope the dermatologist can sort out your skin.
I have heard that T can make us extra emotional - I know it has with me. That's not much of a comfort I know, but may explain the emotional roller coaster to you and help you know it won't last - especially if you are able to change drugs. Maybe paclitaxol is kinder to skin too?
I'm probably not the best person to remind you why we are all going through all this, given my earlier post. But what I do know is that chatting on this thread really helped me this afternoon. The support and advice was invaluable to me - including your kind comments just now. You have done the surgery, you have done 4 out of the 6 chemos. You have gone so far down this hideous road to recovery and beating this. Hope we can all send strength to you to get you back on the road again.
Love and hugs to you. xx
Someone asked if I was taking anything for these pesky periods, Yes! Mefenanic acid and Tranexamic acid..
(They do appear to be working everything normal)
Thank you so much Agarside, WMJ and Cookiepuss for your tips and reassurance re FEC. So so appreciate that. WMJ - you are right about taking one day at a time, I must do that. I try to, but do need reminding. This whole thing is too big if you look too far ahead. Thanks all of you for that support and understanding. I'm here to offer any advice that anyone needs for T.
LennyGK - I was prescribed Fluconazole and antibiotics to take for 7 days starting on day 8 for each cycle of T - automatically given and told I must take whether or not I have any symptoms. Don't know if I will get with FEC or not. Again it seems we all have such different advice and drugs.
Agarside - I've not had breast surgery yet so can't comment on the stabbing pains, except to say that I did have a few stabbing pains after my port was put in and they used it for the first time - got the pains for a couple of days after that. Don't know if that helps at all? Doc didn't seem concerned.
Looks like Snail888 has won the most exciting day I think! I can't top that. I have managed to actually leave the house for a walk but that's as exciting as it gets...although close call with the ironing and paperwork. We are going to feel so free and liberated once we are through this chemo - trips to the shops etc whenever we want, with no mask, wow.
Rooner - you sound happier today, than a few days ago, glad to read that. How exciting about hair growing back.
And prize for best comment today to Agarside for making us all feel better about being forgetful. I forget what I am saying mid sentence sometimes.
Love, Evie xx
Evie, When asked, you get traavel sick, you had sickness in pregnancy and get it all!! Emend, Ondasatron and Domperidom, they all worked well for me - the latter two are given out like sweets on our chemo day ward. Beware if taking Dex, you could spike a temp with Ondasatron and get "hot red face" which is not pleasant. My sympptoms have not been too bad, it is the "other" underlying problems that I had that have exasparated the situation... my first FEC was not too bad at all... periods and gue ear, then my back pain.... all have added to discomfort with the next two cycles. But Days 1-4 are pretty sh*t but after that you can get back quite well.... good luck, we are all here to help get you through - as I am sure I will be needing support for my 3 x T's... although I *think* they will want my Hb back to normal ranges, for me, not just "normal"...
Jackie, thoughts are with you... hope you are improving as we speak!
I am booked on a LGFG day, sometime in May.... Whether I go I am not sure I will need it, would prefer someone going through this who actually needs it to have it.... But interested in online tuitions - but do have a 13 yr old DD who is up to date with all this stuff.. I take it my lashes and brows are going to go in the T cycles... I still have patches of hair all over place that hasnt all fell out...
A couple of things I have noticed this cycly, where my lumpectomy scar is, i have been getting a lot of sharp shooting pains and tingles in this area, also in the lymp node area... each cycle has got a bit worse.... wondering if just me??
This time my chemo vein is very sore, feeling bruised.... luckily no sore mouth or ulcers.
I got to see all my bloods charted and the lowest my neutrophils went is 1.3 and that was with my cold!
Family is cooking the Sunday roast, so looking forward to that, and catch up on all the TV I couldn't watch these last couple of days as looking at screens and phone send the room spinning!
I have just filled in my freedom of information forms, to get all my mamogrammes from 2015 (2) and the one from 2016 with all the doctors notes, to compare - will be interesting to see if I have the fastest ever growing DCIS/G3 tumour ever....
WMJ - my husband just asked if I wanted to pop to Wickes with him for some DIY stuff but I declined his kind offer!
My most exciting moment was going to Currys yesterday for a new kettle.
I might pop out to the dustbin in a moment to put out some recycling stuff 🙂
Good to see you back with us LennyGK. Hoping you are just being superwomen on a part-time basis at the moment! X
I know it is easier said than done & difficult Evie-S but try and take each day as it comes and leave Friday to Friday. Otherwise you are going to work yourself up into such a state and be far too anxious. Remember everyone is different and we all react differently, furthermore we react differently at different times to the same drugs! Sometimes times we are okay with a drug and then other times we are not. Be kind to yourself Evie-S.
Hope everyone is having a reasonable day, it has been very dark here today and bitter cold. My treat today was I went in the car to the local tip with my OH.....Gosh my life is so exciting. Anyone else had an exciting day like mine?
Bit of a miserable day here so no inclination to head outdoors and just keeping warm and comfy inside. Still feeling a bit woozy/light headed and have come out with the odd sentence that makes absolutely no sense. I am just doing my online shopping order but am not convinced that I will end up with what I intend! Could be an interesting food week. Feeling a bit achey and a slight sore throat and food tastes of nothing. I have just had pizza with a load of jalapeno peppers piled on top for some taste but it has just given me heartburn.
Anyway apologies if the following is just as confused.
Rooner - thanks for the tip re the Opi nail varnish; I have ordered some and will give it a go as it does get good reviews.
Running Girl - thanks for the You Tube link and I will have a look at that when I can focus a bit more! I did have a look some time ago re doing eyebrows but for some reason it seemed to be a lot of drag queen make up demonstrations coming up! I was looking at the WonderBrow demos but it would take me longer to do the brows than it would for me to put a full face of make up on! How do people find the time.
Agarside and Jacquie - hope you are feeling much better today.
Tor - I am getting Herceptin and Perjeta with the T for 3 cycles. Once the T has finished I will then have Herceptin via injections every three weeks (a total of 12 injections so 15 lots in all) so you don't have to have it through a drip/cannula. My understanding is that it's a 5 minute job to have the injection. I am not sure why Perjeta is only for 3 but will ask my oncologist next time.
LennyGK - I got Fluconazole with Nystin as standard for my mouth.
Finally, Evie, you will be fine on the FEC. Just make sure that they give you the anti-nausea such as Emend which worked really well for me. If that doesn't agree with you there are other meds they can try. Please feel free to come on and ask for tips/advice as you go through it.
Morning everyone. I am starting to get really anxious about FEC on Friday as several of you have said T is proving easier than FEC. Yesterday I too was ready to walk away from it all. Feel like my body can't take any more.
Agarside - sorry to hear about your passing out and period. Hope you have a lazy day planned.
Running girl - kind of you to share that make up lesson link. I have just watched it - the lady who does it is very good, though not sure if I have the same steady hand! At the moment I'm struggling with make up as my eyes water or I cry so often and the tears sting. But as soon as chemo over I def want to try her tips.
JoJo45 - thanks for the varnish tips too. Given my eyes it is prob best for me to do the LGFG course after chemo like you are.
Tor, WMJ, LennyGK - sounds like lots of us are in hibernation and desperate to get out into the real world again. I know I'm terrified of catching something after the horrible bug I got during the first T. It's very hard for others not going through this to understand what we feel like going out/hibernating etc, it's so good to be able to share on here.
LennyGK - I had a white tongue every time with T, but GP said it wasn't thrush. It disappeared once I started the Fluconazole so maybe it was or maybe it was just time?? Taste also started to come back a bit after a week or so.
Love and hugs to everyone on here. xx
Morning WMJ - thanks for asking about me 💕I've been reading everyone's posts but just can't seem to get it together these days to post myself! I know what you mean about wearing a hat in April - it's much easier to pull on a hat in this cold weather when everyone else is wrapped up too! I have to say I'm finally starting to get used to my wig - I've been wearing it with a woolly hat over it and I think it has flattened and looks more natural now so wore it to get my chemo on Thurs on its own and it didn't seem so bad.
I got my first T on Thursday - no nausea which was brilliant but yesterday the bone pains started (although I'm not sure if this is the chemo or the neulasta injection that's causing them. I haven't had the injections before and my oncologist said I just get one on day two from now on). It feels like jaggy pins and needles all over and I hardly slept all night. I also woke up with a furry white tongue so guessing that's the oral thrush kicking in.
I really can't wait until this is all over - I hate getting this poison put in me and having my life on hold.
Big hugs to everyone - I see from recent posts that a lot of you are dealing with an awful lot on top of this rotten chemo and my heart goes out to you all xox
So sorry too hear about the problems you have been having Argarside....Those dam periods are a nightmare. Can't they give you something to stop them, I realise it is more drugs, but passing out etc is just awful. Going through this is bad enough without the added issue of periods. Hope things improve for you soon.
Tor sorry to hear you are feeling so low at the moment. I am with you there about feeling as though in hibernation, I see very few people and furthermore avoid them as don't want the pity, sympathy etc. This time of year so many people have colds etc. I still managed to pick up a virus even though in partial hibernation, thankfully it didn't prevent my treatment going ahead. Strangely enough I was chatting to my OH and our son yesterday about going to 'normal' places once the chemo is done. I was saying I don't want people seeing the effects of chemo before me, I don't really think they got what I meant and wanted to reassure me as best they can. I do have a wig but not wearing it at the moment. IF I go out I just wear a hat, much easier in the winter to do that. Not so easy to do that in a restaurant in April though.
Jacquie48, hope you had a good night and are improving further.
LennyGK, no news from you for sometime, hoping you are doing okay.
T day 5 and not aching as much as yesterday, so far at least! Definitely not as bad as FEC so far! I have fluffy fuzz on my head but my eyebrows are definitely thinning more.
Tor - I am having Herceptin but not Perjeta. I asked the oncologist about Perjeta and he was rather vague because it hadn't been discussed and approved at the MDT, he didn't know if he could add it in. It didn't appear so I am assuming for some reason I won't get it... something to quiz him about at my next appointment I think. At least I get it as an injection though, they are struggling with my veins now.
Hi everyone - I've had the first of 3 T's following 3 Fec's, and have also started Herceptin and Perjeta which will last one year. I'm having a picc line put in just before my next dose because my arms are black and blue and painful, and I hadn't realised that the double dose has to be intravenous - can't deal with that for a whole year! Anyone else doing the same? My concern is the weekly flush that is needed, which sounds like a real bind - I don't know if it can be done at home by a partner? Also I'm desperate to get back to some sort of normality and want to travel, not be tied to home. I've still got to face mastectomy and rads, but hope to reclaim my life by June. I'm dealing with the side effects of T ok - not nearly as bad as the Fec, except tired and a bit achey, but anything is better than nausea and dizziness. Silly things like a very dry nose (vaseline helps a bit, sore throat and black nails, and eyebrows and lashes disappearing fast, which I'm finding very hard to deal with as I look like Gollum on a good day, and still find having to wear a wig difficult and feel very self-concious, even though everyone says it looks lovely. Best boost so far was from a young lad (16) who said to me "at least you haven't lost your hair!" Bless him, I nearly cried. And my 3 year old grand daughter still calls me Curly Nanny and tells me to take off my hair (my wig is straight). I feel like I'm in hibernation, with everyone keeping their distance for fear of me catching anything, and when I go out I may as well carry a flag declaring Chemo Patient, to excuse my looks and grumpiness if anyone coughs near me!
Best wishes to everyone out there.......!
Ladies, so good to see the support on this thread.
Side effects on the T are slightly different to those on FEC, nausea is much less. Just watch out for the bone pains and tell the ontology team of anything you are not sure about, I've found my team very supportive. Unfortunately my side effects were severe on the first T so they reduced the dose for the second round, much better this time 🙂, I had nosebleeds a lot on the first which left my haemaglobin levels a bit low.
Nail varnish, 💅🏻 I've used so many over the years! Currently I'm using coconut infusions by Barry M, they claim to nourish the nail and don't need a base coat. They certainly seem to be working. I find if I apply in the evening and sit watching TV or on iPad I don't smudge them 😆😆 the last ones lasted a week before chipping. Just redone today.
I've just booked on a LGFG course at our local cancer charity but I couldn't get one until March, I'll be finished chemo by then but still worth doing.
Hugs to all 🤗🤗🤗
ps my hair is growing back, definitely stubble coming through 😀 However eyebrows and lashes have nearly gone 😕
Hi Rooner - so glad to hear you are feeling good and can enjoy your son's birthday - a very happy birthday to him. Thanks for the varnish and Look good feel better advice. Am def going to look into it now. xx