Hi Jacqs and Aley, regarding the mouth issues. I had a terrible bout of oral thrush, mouth ulcers and generally yuckiness when on my first T cycle. It also had a greenish tinge to it and was slimy and really sore and thickly coated. The inside of my cheeks had ulcers and I kept biting on them. I did end up in hospital that cycle as my neuts were very low 0.1 I think. I had a high temperature which was what prompted a call to the chemo hotline. I had some blood tests whilst in hospital and a chest xray to asses whether I had an infection but I didn't just low neuts. I was kept in for 2 days and given IV antibiotics. I also then got the ilfrastrim injections after each chemo to help keep the neuts up. I was put on flucozonale for the mouth thrush, 1 a day, and also used Nystatin (which I got from GP) for my tongue. Every cycle after that I got the flucozonale to take home with my usual chemo drugs and started taking it at a soon as my mouth started to feel sore, about day 4 and took it for 10 days regardless aand although my mouth still lost taste etc it never got as bad again. I also mixed up a solution of cooled boiled water with salt in and gargled with it after every time I ate and also inbetween, I think it did help. I was also told to eat pineapple as this cuts through the nastiness, I never actually tried it and still have tins of pineapple in the cupboard. A lady at chemo told me to freeze chunks of fresh pineapple on cocktail sticks and suck on those to help with the mouth.
Hope something helps with the mouth... it really was horrible.. but like everything else it does pass and now almost 3 weeks post chemo I have taste buds and a pink tongue!
Relieved to have my 3rd & final FEC today. Left with awful taste in my mouth. Nurse suggested eating pineapple, but would appreciate any other suggestions.
Aley - i’ve got a coating on my tongue with a greenish tinge to it. I mentioned it whilst having my chemo session today but nurse didn’t seem overly interested - didn’t even look at it. Wondered if this is what’s causing such bad taste in my mouth. X
Glad to see you are all getting along well, and finding those good days amongst the SEs. As for hair, mine started growing towards end of FEC, and now I'm finished chemo (almost 3 weeks ago) I have a full covering of white hair, its quite soft and downy like baby hair still but its hair at least. It started growing on the T part of chemo. Leg hair and elsewhere not doing much and the eyelashes and eyebrows not coming in yet, but they didn't fall out until 2nd T so last to go.
Luckily my neutrophils edged up to 1 from 0.99 (whatever that means) and so I could go ahead with the chemo today, which was a huge relief. Apparently the Carboplatin, which I had last week, has this effect. I'm also low on Sodium, which seems odd, but apparently it's nothing to worry about. I did ask whether I should be eating anything in particular to help bring that up again, but just got a funny look from the nurse. Oh, and here's a tip, maybe: another lady was saying that she is going to try putting olive oil in her nose to combat dryness - the nurse responded by asking if she wanted balsamic vinegar as well. Might be worth trying though (the olive oil, not the vinegar!).
It is amazing how one day can be so different to the next! Yesterday, Day 12 after 1st FEC, felt rubbish...a bingo card of SEs I was wiped out, felt crap, nauseous, dodgy tum, aching muscles....woke up this morning and feel like a different person 😁. Thank goodness! Sending good wishes to all those suffering today...it will pass...just hang in there and be kind to yourself.
Hi Aley. I would agree on both points. I’ve been told I look younger in my wig & I too loved my short crop.
I’ve heard a few people say they have some re-growth after the last FEC, buts it’s quite fluffy.
Hope you are all doing well.
Well after a weeks rest, i’m due to have my 3rd Fec on Thursday & I’ve already started with sleepless nights. Can’t help wondering what’s going to happen with this one.
On a more positive note I got stopped yesterday whilst out shopping with my hubby by someone complimenting me on my lovely grey hair. She said her & her colleagues were debating wether or not to go grey. I didn’t have the heart to tell her that it was a wig although it is the same colour as my hair was prior to losing it, so was able to chat to her about going grey originally. Made me feel more confident about the wearing the wig though.
have a good evening all xx
We all seem to have gone a bit quiet over the weekend. Hope everyone is ok?! I've had a bit of a rough week (at least by my standards). Too little sleep, lurching between diahorrea and constipation, slight constant nausea, food and drinks taste horrible etc. I had my second dose of Carboplatin last Wednesday and am blaming that; the weekly Paclitaxel doesn't seem to cause any serious problems as yet. Have been feeling rather low on energy as a result and so now am also feeling bored, without being able to rouse myself to do any sort of interesting activity.
I'm now also loosing my hair everywhere - don't mind it on my legs, quite pleased with that actually, but the other "bits" will take some getting used to. Have signed up for a headscarf workshop on Friday at my Macmillan Cetre - if I'm going to loose my hair, I might as well try to get some style in there somehow!
Right now the chemo seems a bit of a long slog. My lovely husband is keen to book a holiday for next year to give us something positive to look forward to, but I am so uncertain about the timing of my surgery etc that I am holding off for now. It's nice to dream about having a break somehwere nice next year though.
Yes, drippy nose and nosebleeds are definitely on my list of SE too. My consultant told me it's very common.
I've now had four bad nights in a row due mainly I think to the steriod, but am on my last batch of anti-nausea pills today, so will hopefuy start sleeping better. And despite the cold-capping I am now starting to loose lots of hair. I washed my hair this morning and tons came out. I'm still clinging on to the hope that it may just be thinning, but I've got a hairdresser appointment in 10 days and should know by then if it's a matter to cutting thinned hair shorter or going for the shave!
I've downloaded the Headspace app and am actually finding this quite useful. Only on the basic intro so far, but it's quite calming and each section is only 3 minutes, so very doable.
Hi galligirl, i had constantly running nose with Fec, it may be to do with losing your nasal hair! I then got very dry nose during T to the point of discomfort. Also very watery eyes, due to no eyelashes and an effect of the T chemo.. just another joy of chemo unfortunately. If it keeps you awake though perhaps check with chemo hotline, they may be able to help. Also watch out for nosebleeds, when mine got very dry i would get sudden short nosebleeds!
Good morning all! 9 days after 1st Fec and was wondering if anyone else had ‘nasal drip’ down the back of your throat. I seem to get it when sleeping and have to sit up and clear my throat. Soz quite hard to explain! It could just be me and nothing to do with chemo....
I phoned the hospital who advised a trip to the dentist. As a result, I've got some strong fluoride toothpaste on prescription which should hopefully help calm down the inflamation in my gums. No sign of ulcers or infection so that's good. If the problem persists I may need to look into a mouth guard - I have a big overbite, so my bottom teeth digging into my top gums making them sore. Not normally a problem but i guess the gums are a bit softer with the chemo.
Hope everyone else is OK today.
Hi Pulapula and Kip,
Thanks for all the reassurance, just what I needed!
I've been to one of the pampering sessions run by Look Good Feel Better. It was a lovely morning. Lots of brilliant freebees (my 17 year daughter was rather jealous, so am guarding my lovely stash of goddies!). Everyone looked a bit grey and apprehensive when we started and by the end we all had a lovely (fake ) glow and were smiling, laughing and chatting. Definitively worth going to.
Had a sweet card with a very unexpected offer of help from someone I didn't think of as a particularly close friend today. That sort of thing really makes my day. Sometime, in all this awful mess, I actually feel very fortunate - it seems to bring out the best in (most) people! Also had a nice snooze after lunch, so am feeling much more energised. Just put up a new shower basket that required a lot of strength from my arms - my workout for today!
Hi all, just wanted to pop in and say, don't worry we all have those horrible thoughts and worries at times, especially during the night when you lay awake worrying. I've had those kind of comments and worrying looks from people, even others in the chemo unit telling my their horror stories.. not helpful but it happens. Try to remember every case is different, everyone reacts differently and we all worry! Its normal, but talk to your nurses, use the apps, come on here and let it all out, it really helps. I've spent hours trying to work out whether the look on my oncologist's face was good or not! Daft really when I think about it but during the night it was a biggie! AVOID GOOGLE too, its so tempting but lots of it is out of date and its just scaremongering. My nurse said only go on Breast Cancer Care or MacMillan website.
Somebody asked about arm pain after chemo. I have had a sore forearm which pulls when I move it for a few days after each chemo, my nurse said its normal along as it isn't red or burning or swollen. Keep an eye on it and ask chemo hotline if you are worried. Lots of the ladies have PICC lines though and they seem to be really good for avoiding the constant issues with veins, so don't worry if you are offered one of those.
I hope you are all managing to get some SE free days, make some nice plans and do something fun...
Good Morning everyone,
Galligirl: welcome to this really lovely space - it's a great place to off load and get support and advice.
Thanks to you and ktk for the reminder about Headspace. I've heard of it but it completely slipped my mind as a possible tool to deal with anxiety etc. Will defintively download it today and give it a go. And yes, I'm definitely staying away from google. Usually I like to be well-informed and will google minor ailments, but with the cancer I've made a very conscious decision to trust my BC team, to ask them for information, and to avoid the often conflicting, ill-informed and scarry stories that I might find on the internet. Plus there is of course this lovely forum - I had never joined anything sort of group "thing" online before, I'm not even on facebook (due to work restrictions), but the support everyone gives here really has proved invaluable.
Jaqs: 2am - that's terrible! I hope you get a chance to rest during the day. I woke up at 4am, this time due to the steriods I think. Then started thinking about work - which I have actually had to give up due to the treatment, so why I start worrying about work issues now I don't know. Except, as you say thoughts and feelings are much harder to manage in the middle of the night. I hope your chest feels better this morning.
I've got a long list of things to do in the house today, so that should keep my mind occupied. I'm also signing up for a couple of interesting workshops on writing and jewellery making in the next couple of months, so using this time to explore a few new things. And yes, STAYING POSITIVE!
Have a lovely day, everyone!
First post, a week into FEC no.1...(for the second time!).I have found all your comments really helpful - just never been brave enough to post...but seeing some struggling with anxiety I just wanted to say...I have always had anxiety but nothing like I have experienced in the last couple of months. I did go to my gp and am on some medication to help with the ‘panicky’ feelings. It has really helped just calm the noise in my head. I have tried to do mindfulness- but struggled....although I have just started using the headspace app and found it much easier to use....just need to keep practicing! It’s worth a go....
Its currently 2am & i’m not able to sleep. Woke up with chest pain which is a result of the blood clot on my lungs, but it always feels so much worse in the middle of the night. I’ve had a few nights with horrible thoughts We’ve just got to keep positive & tell ourselves that we will get through this.
Someone suggested meditation & deep breathing to calm the mind - i’m struggling with this but maybe worth a try?
Hope you sleep well tonight. Jacqs x
I had a rotten night - nose blocked and am getting neosebleeds occasionaly. But the worst thing was that I had awful nightmares about only having a few days to live etc. I'll spare you the details, but it was horrible. During the day I can push the really horrid fears and thoughts away, but can't control my mind during the night of course. I think these particular dreams were triggered by a couple of well-intentioned, but slightly worrying comments from my oncologist ("that's really good the tumour doesn't hurt anymore, especially as it was so large") and a fellow patient ("Oh dear" - response to my TN diagnosis, followed by worried look). They were nothing really, but somehow difficult to put aside and clearly my brain needed to digest them a bit more at night Does anyone here have similar problems? Any tips on how to deal with negative thoughts?!
Hoping for a better night after spending all day in in the chemo ward (my drugs hadn't arrived, so I had to wait around for a couple of hours).
Sleep well everyone!
I have finished my chemo but did have a similar experience. The first treatment I described the tightness as discomfort but after the second it progressed to feel like toothache. Subsequently I had a Groshong line inserted and had my chemo FEC administered through this which was much more comfortable.
My, advice would be to speak to your ontology nurse again sooner rather than later.
I can do this.
The genetics test is very straightforward. It's basically just a bloodtest, and they only need one small tube. I also had to complete a table with my family's cancer history going back to my grandparents on both sides and then had a brief chat with my consultant about this. She explained the different types of genes they test for (there are 4 in total), possible outcomes, additional advice and counselling that's available etc. It was a useful discussion and I felt ok afterwards. Am trying not to worry about it now that I am waiting for the results (another 8 weeks or so). There is nothing I can do about this anyway - I've either got the gene or not. If not, great, if I do, well I'll probably try to reduce my risks of having any further cancer... Then there is the question of my children. Apparently, if I've got the gene, they wouldn't get tested yet (only 11 and 17, so too young), but would be ear-marked for an early monitoring programme that kicks in from when they are 30. All in all I'm glad I've done the test - it seems better to know. I am now just hoping that for once luck might be on my side.
Hi ladies doing FEC ... don't worry, FEC really does seem to follow a pattern and you have those few rubbish days but you pick up quickly again, just like KTK said!
Gene Testing - I'm not having that, but I am guessing there are areas on this site dedicated to genetics, also some of the ladies on the June chemo thread are/had the testing and have lots of info on there, might be worth a read, probably a few pages back though!