Hi Alto, glad it went well today. Second altos rock don't they (yeah, me too....) don't worry about the Morris dancing either - fully blown bell ringer here!!! (think we have team work, church fetes and pubs in common!
Love P xxx
Hello Cheryl and ChoccieMuffin! Although I'm quite tall I did choose my username because of my singing voice - second alto when there's a choice as I really don't do high! 🙂
I've sung in various choral societies over the years and now in our village church choir (four part, fully robed - we even chant the psalms and do proper sung Matins). DH is the organist and choirmaster.
DH and I used to sing together as a folk duo - he has a lovely high tenor voice and is going to sing the part of Marius in One Day More from Les Mis in a charity concert he's helping to put on in March. For cancer charities, of course!
And here's my guilty secret - I am a true folkie - we have an occasional ceilidh band in which I'm the drummer and DH and I actually met whilst we were both morris dancers, but I probably shouldn't say any more on that point! 🙂
I had my third EC dose yesterday. My hair fell out at Day 23 - New Years eve! although it had been falling out for a week or so beforehand. I was having a shower and my hubby just came in and pulled it out for me! My head was lovely and warm and I didn't feel a thing 🙂
I wear my wig to go out, but love my soft fleecy ski hat indoors - I even wear it in bed and sulk when it goes in the wash. I've got another beanie and a cool ski buff which is soft and great. Look up buff head wear on google and ebay, theres a great dem on you tube to help you see the different styles and the different ways you can wear them.
Hope those thoughts help.
(Psst, Cheryl, a word in your shell-like... I think our Jane might have been making a reference to her being a teensy bit on the tall side...)
Seriously though, have you found that all the treatment has affected your voice?
I'm glad you've got off to a good start, Jane. I hope it continues that way.
BTW, are you an alto? I'm a mezzo, and hoping to manage my first choir rehearsal since Christmas tonight. It's a long drive there and back, which my OH will do, but it means a longer evening than I've had for about a month.
Hellooooo folks! I am now an official, fully paid up member of the FEC club.
So far so good - didn't feel a thing while it was going in. Only SE so far is the red wee, but it's a bit early yet...
Decided not to use the cold cap - the big thing for me was having it cut short, and at the moment losing it seems small in comparison and I didn't want to hang around after the chemo was done.
I have a huge bag of pills to pop and an Ondansetron suppository for emergency use, so that covers both ends, so to speak. 🙂
The staff are so lovely at the unit - if it wasn't for the treatment it would be a really nice place to be! I was the youngest there by about 20 years though... sometimes life just isn't very fair.
Mazbaz, I have been using a toothpaste from Boots, Biotene, which has helped with the dry mouth thing. Though I must say I am so used to the 'felt mouth' feeling now (Fec1 day 😎 that I almost went out this morning without brushing my teeth! Just thought they felt normal, ugh ! They do a 'saliva' thing and a mouthwash too I think.
Alto, good luck today. I must say it's true that when you're feeling weak as a kitten after, it really works to get out and walk, even just a few minutes - seems improbable at the time but you'll feel soooo much better after.
Kaz, I keep getting itchy moments, and I just scratch! It's going to go anyway so ho hum... Most annoying when it happens at night though.
Been treated to a new pair of boots by OH after getting first proper falsie this morning :_))) What a difference to the bean bag thing, so happy! Also went round some show homes, not that we're moving, just being nosey!!!
Hope everyone is okay today, hugs and love to anyone feeling down.
Good luck, Jane. I've had very little in the way of SEs so far, so perhaps you will be lucky also.
Good luck Jane - here's wishing that all goes smoothly and you sail on through - there are plenty who do, so fingers crossed. Even the worst se's pass... honestly, so just go with how you feel, rest up and make sure you have servants to wait on your every whim. And then, once you feel great again, don't tell anyone, and string it out for another few days...
Sophie, I like you have never been into hats so this is a new experience. I love the idea of a bandana underneath the baseball cap, I'm going to try it later. Bright pink beret today. I mean bright! Hello world I'm feeling good this morning lol. Kaz this is day 14 for me and hair is steadily dropping. Good luck Jane! You might be the lucky one with hardly any SE's so don't feel fed up. This malarkey is very much one day at a time for me. Catch you later x
Oooh reading about all these SEs is making me feel even more fed up! Leaving for FEC1 very soon, so will post later depending on how I feel. Thanks for the tips you've all posted - my mind is buzzing with them at the moment!
See you all later,
Kaz, sorry to be bearer of bad news... could this be the one time in our lives we'd actually prefer to find nits?!!! Day 14 after first FEC seems to be pretty standard time for hair loss to begin.. mine was bang on schedule - and falling in earnest by what would be day 22, second dose day. Motheaten by Day 25.....
And it is horrid. I really wasn't fussed by the thought of it, but the reality, and not having any choice in the matter once it starts to come out, is different. A baseball cap is my new best friend - with a bandana underneath. And I hated hats beforehand...
Maria - it may well be partly down to the rads you had previously - but I do know of other women on here who have had to use the 'fake' saliva (mmm. doesn't that sound lovely?) during FEC - so I think a lot of it is a side effect. My mouth feels like it's been coated with felt for about a week post chemo, and tastes disgusting - my onc. prescribed Difflam mouthwash, which does help a little. Also be aware that the treatment can trigger thrush in the mouth, so if you get white patches too, get on the phone, they can give you mouthwash for that too.
Some people have found that sucking ice chips/ice lollies during chemo can help tone down this side effect - but I can't remember which bit of FEC it is that you need to do this during, C or F?
No saliva at all sounds very unpleasant, poor you! I hope that has settled. My dental hygenist suggested sugar-free gum to help promote saliva flow while going through chemo, but that may only help with 'normal' dry mouth problems, of course, and it wouldn't help at night.
I hope the new hospital works out for you,
Well day 14 fec 1. Think i,m getting to grips with this now. Am glad to be coming out the 'other side'. Only real problem i,ve had is that my saliva gland decided it needed a break and went on holiday i think. My mouth was completely dry - no saliva at all. Had 2 nights without any sleep because i kept waking up feeling like i was choking. i was eventually given artifically saliva and this seemed to help. I don't think this is a standard symptom of fec - rather a product of the radiotherapy i had to my throat some years back for cancer of the thoat. But i am frightened that this may become worse the further i get into the treatment.
On the good side, i've managed to find a wig that suits me wahoo! i had the cold cap and nothing seems to be happening so far so i may never get to use it.
Also i have changed hospitals for fec 2, so i hope i'm still going to get the injections. Going back to original hospital if not.
Good luck Jane for your first treatment, I found the build up was worse than the actual treatment itself. All the advice on this thread says don 't wait if the after effects are causing you discomfort. There are so many anti nausea drugs etc that you just need to keep asking until they get the doses / meds right for, don't suffer at all.
Re the White cell injection, I am lucky enough to have had it. It was 1 single dose that was injected into my stomach 24 hours after my 1st treatment. I am assuming I get it after each fec but didn't ask. It didn't hurt but I did get a friend who is a nurse to do it for me as i just hate injections. I am 42. I didn' t ask about side effects but saying that my back and neck have started aching a bit today though it's very mild, certainly no pain.
On the question of hAir, on what day roughly does it go? I am on day 9 after 1st fec. I had the cold cap and was hoping that it's worked, but my hair does feel strange and my head gets cold ver quickly now, which never used to happen.
Oh Sophie really sooo soon???? 😞 😞 And there was me thinking hey kaz this is a sign its not gonna full out!!!!! Oh well S... happens i suppose.....
Kaz - hope the funeral goes well (hugs) xx
Hate to say it, but the scalp crawling sensation sounds a lot like your hair follicles starting to shimmy... however, don't despair - it doesn't 'usually' all come out at once/overnight.. but be prepared to start shedding a little in a day or two. I only put up with mine falling for a couple of days because I couldn't stop running my fingers through it.. but once clipped, it didn't really come out in earnest for another week - the day of my second FEC!
he was 93 and has had a really happy life and went peacefully, we will certainly be celebrating his life.<<
I'm glad he had a happy life and a peaceful end.
Thanks Cheryl thats a really good idea
Thanku for saying sorry but he was 93 and has had a really happy life and went peacefully, we will certainly be celebrating his life.
Take a hat just in case and hope your hair goes slowly rather than dramatically?
More seriously, I'm sorry you've lost your grandfather.
Hee Hee, Thanks Cheryl I really hope it doesn,t go just yet i have to go to my grandads funeral next Thursday and i am reading a poem which will be hard enough with hair!!! Fingers crossed for us both
My head has been itching on and off for a few days and I don't dare scratch. Nothing dramatic has happened so far, but I find a few hairs here and there. That's my guess Kaz, that your hair follicles are protesting and getting ready to sulk.
Hope everyone is feeling ok
Jane i would defo agree with everyone else regarding drinking and snacks to take with you, my first fec was last Thursday and my appt was 10.30 and i got home at 3.45 (living 10 mins away from hosp), its a long day!!!
One more thing i would say is that when they put the red cocktail in ask them to put it in slowly....... It really stunk me when the nurse put it in so she slowed it down more and the stinking stopped!!!
OK i have i strange question for you all Has anyone experienced a strange sensation in their hair???? I thought at first that insects where running through my hair and got oh to check........Oh and NO girlies IT IS NOT NITS!!!!!! LOL Very strange.....
Good luck for you 1st fec Jane
Hugs to everyone
Hope everything goes well today Jane! Day 13 for me and feeling (pinch myself) quite good. Been out just 2 miles in car to parents house and to the cashpoint. Just normal things have really made me feel brighter. Handfuls of hair shedding so eldest daughter is on her way over with the scissors. Hope everyone is enjoying the brighter weather and feeling ok xx
Alto, loving the hair!
I was lucky enough to get on a LGFB session yesterday, it was fab. If you can't get to one there's a DVD and booklet you can order, think there's a donation option and P&P about £2.50.
Here's the link to thier new website for anyone interested:
Hope everyone has a good day, love P xxx
I agree about the injections - so much money might be saved from infections/prolonged treatment that it would probably balance out. The Onc did say that ironically it is younger people who suffer more from the cell drop precisely because they arey are younger and therefore their body produces more naturally - meaning that if there is a drop its felt more. Who knows!
FEC1 - my advice is drink, drink, drink - anything! I was virtually sloshing by the time i got in there and continued to drink all thru the next day. Not sure if it's just luck or because of the drink but I have not really had any SEs, not even felt sick really. Will be doing the same for FEC2.
The general recommendation is to eat something 'a few hours' before the actual treatment. You will have to hang around a while, so snacks are a good idea; remember it may be past your normal lunch time before you get home. There is a theory that cold or iced drinks help mitigate the effects on the inside of your mouth and throat in the same way that the cold cap helps some people to retain hair. Books, puzzle books, someone to chat to--the more occupied you are, the less anxiety, not that there's any way to avoid it entirely.
Drink a bit extra today and tomorrow morning, so you are well hydrated, and eat plenty of fruit and other fibre, ahem.
A supply of light snacks when you get home--having a tub of grapes, satsuma segments, apple slices, things like that really helped me, because I could just eat a couple of grapes and a slice of something and that was enough to settle the light queasiness I had. Plan on very light meals and frequent small snacks for the next few days and follow your appetite.
Good luck, I hope you get off as lightly as I did with FEC1.
Yes, I would eat something - if there are any side effects they usually don't arrive until a few hours after the chemo, so there is no point in not eating, and if you don't eat you may get hungry/dizzy.
Also take a few biscuits etc in case you get hungry there, although my chemo suite was great about bringing round coffee and snacks, and had a good drinks machine (free). Most people read, munch on snacks, chat. it's not as grim as you might imagine.
Best of luck
Ok, so I've got FEC1 tomorrow... eep!
Had the hair cut and got the cosy jim jams and fluffy dressing gown to live in if/when I get hit by the lurgy.
Any last minute tips? I'm in at 11am, so should I eat something before I go?
Getting a bit nervous now...
Perhaps they are less likely to be effective or perhaps the SEs are worse.... It would be interesting to know.
Perhaps this is one of the reasons the onc told me to stay on sick leave.
My wbc struggled to get back to normal between FECs 1 and 2. 0.5 two days before FEC2. Had to go back on day of chemo for another test and just scraped through. Same thing happened between 2 and 3, but this time wbc still too low so was deferred a week and told it was the injections from now on - the sort which are every day for five days starting on day 5. They were OK - OH administered them into tummy flab - could hardly feel it. Slight low back aches for a couple of days but that was all. I'm 58 by the way - not sure where that puts me on the young/old scale for them. I'm also pretty fit. Surely everyone who needs them should get them
Actually why don't they give them to everyone - it would probably save more money in hospital admissions and antibiotics than it costs to give them to all.
Must have worked 'cos the wbc was well up when fighting the bowel infection.
Cannot help thinking its a bizarre thing to offer young fit healthy persons the white cell boosting injections and not the older person whether fit and healthy or not....mmmm?
I got neutropenic sepsis on the last cycle but because my bloods recovered dramatically by day 14 no additional jabs deemed necessary!
Thanks for the information. I suppose I can wait and see how it goes, regarding the injections. I feel like a pincushion at times as it is.
Yes you can ask!
i had an allergic reaction to a particular chemo mix - couldn't breath, flashing lights. About 1 in 10 people have a reaction to this partic' type of chemo so not entirely uncommon.
It is the white cells that the injectios are for. My mum was with me when i was asking about the injections and the Onc said "We wouldn't be offering it to your Mum" She's 65. I think it's worth an ask to see if you can get it.
Couldn't make my hospital appointment due to upset tummy. The Onc rang me up and had a chat about the neutroponic sepsis at the weekend. She has adjusted my meds. I'm to have the single injection and some different sickness ones. I thought I saw somewhere that we couldn't eat live yoghurt but she said that is rubbish and she's never seen a neutropenic sepsis with a live yogurt culture, so go for it. It helps balance your tummy. So much information and different advice out there. Thank goodness we can all share what we know. She did say days 8-14 are the days to be really careful about germs and maybe check your temperature from time to time. I am feeling a bit better this afternoon so maybe the good days are coming. Yipee!! x
Some spices, like turmeric, have a mild antiseptic effect, but I don't know whether it's that with ginger or a counterirritant effect. We're all in 'whatever works' territory in any case. I've been using the Difflam regularly and so far nothing more than sensitivity. I am letting things cool more than usual and brushing with a child's toothbrush.
If I can ask, do you mean you had a bad reaction to another treatment and therefore it has been changed?
I was told that if my white blood count dropped below a safe level or if I developed an infection, I would be taken into hospital, but then I'm 20+ years older than you. Hmm.
Sorry, are we talking about red cell counts? There I was told I would get a transfusiion.
Hope you don't mind me chipping and joining you. I had 1st FEC on 10th jan (after 2 attempts with doxsetacsa (Spelling ?)and so far have only suffered with woolly head and walking slowly.
I was given the injections to boost the blood cells without having to ask. In fact i asked whether i really needed them as i was worried about un-necessary side-effects (aching bones, sickness). The Onc said that they were offering it to me because i was young (41) fit and, cancer aside!, Very healthy. I inject from day 5 for 10 days. So far so good, but obviously early days. I'm in staffordshire.
My mouth felt like it was going to erupt last night, but i keep drinking, clean 3x a day and sluice with mouthwash. Ginger squash seems to calm it too. Is ginger known for soothing? I know it helps with sickness.
Den42 - postcode lottery indeed. Some women aren't offered until/unless they have a nasty episode (neutropenic sepsis), some are offered it from start, and some (me included) are given it prior to starting TAX - but not with FEC. TAX is harder on the system, generally, than FEC - but if my bloods had been low with FEC, I would have been jabbed then. So far, all good.
Yup, on immunity - days 10-14 are lowest. You don't have to sit in isolation, but if you were due to meet a friend, and said friend had flu or stinking cold, or shingles.. then you'd want to cancel and maybe chat over phone instead. Also good days for pleading incapability if supermarket shop looming.. but in all honesty, most of us just get on with it. Did consider making kids wear SARS masks as modelled in Japan during bird flu outbreak, but so far kids have been unusually germ free.
Week prior to chemo is def. best week for just getting on and doing whatever the hell you want.. so go for it, all of you!!!
Not sure if the following is of use butI know there is mention earlier in this thread about the white cell injection. I am pretty sure that someone on this thread had it under the nhs though I think it may be a bit of a post code lottery as to who in the UK can get it. My nurse said it cost £1,000 hence the lack of offer I suspect. However, it would be worth asking about it as it may be given under extreme circumstances and surely if a patient has been in bed and when not in bed, in hospital hopefully and nothing else there is a case for giving it? Would be worth kicking up a fuss for.
Jan, sorry to hear your still poorly. I have managed to stop throwing up, but my walk today did puff me out somewhat. Hope they get you sorted better for next time.
Agree with Cheryl, my bumpf says days 10-14 is lowest immunity point too. Pack a thermometer and your "Go straight past go do not collect 200 germs from the waiting room" emergency admission card wherever you go...!
I do hope I can get out for my fancy meal at the end of Jan (wedding anniversary) it will be just before Fec2!
Love P xxx
According to the brochure, the low point for immunity is days 10 to 14, and then it starts to improve. I'm pretty sure I've read that people often do most in week 3, because they generally feel a bit better then.
Obviously if you feel unwell or get a fever or other worrying symptoms any time you should report them, but we need to keep our morale up as well. I think the general tiredness gets worse as we go through the cycles, so it may be now or never!
I don't think we have to stay in isolation unless there is a really good reason to. I hope it's true that the flu season is tapering off.
Hello fellow feccers
I was wondering if anyone can tell me when the danger time of low immune system is over. I am 7 days post Fec1 and have been very lucky as apart from feeling tired I have not been too bad. I am having a blood test on thursday (Day10)If this is ok then has the danger point passed and if it is still low do I still have to be extra cautious about infection or can I relaxed a little. I ask as me and my husband would like to get out and about a little if possible before Fec2
Thanking you in advance for your insights and best wishes to everyone
Poor you- hope they gave you something to boost your white blood cells so you start to feel a bit better soon. Will be thinking of you tomorrow - good luck with yet another hospital visit- let us know how you go.
Love Diana x
Glad you're back home Janipi. I hope they can give you something better for the sickness for FEC2. Good luck tomorrow.
Hello Fellow Feccers. just back from hospital.white blood cells took a nosedive and had a temperature of 37.6 Friday. Weekends are never the best in hospital as there was lots of bank staff and hardly a sniff of an oncologist. Felt very tired and washed out, still do.and this is day 11. Not had any good days yet. Hospital visit tomorrow so I shall be having a few questions as the next 4 months are stretching ahead looking bleak. I don't want to dread the Fec 2 but I haven't had a good day yet and the only outing I've had is to hospital. Moan over, I haven't been physically sick but feel yuk!!! I don't want to be a bedridden invalid for 4 months so will be asking questions tomorrow. Jan x
I'm sure the new hospital will get the records from the previous one and I seem to remember the chemo nurse telling me that my GP would get information about treatment and drugs.
I threw my packets away too.
just popped on to say hello, glad everyone seems to be feeling more comfortable.
i must say i,m impressed with you all - you all seem to know alot more than i do about everything. Me thinks i need to pay more attention lol. i,ve got no idea what tablets i had, but they worked - so thats good, chucked the packets away now. i wonder if that was a mistake cos i,m changing hospitals for the rest of my chemo. oh well never mind.
i hope everything remains good for you all
Thank you lovlies, confidence restored for the coming activities,and will be jumping up and down for better meds for Fec 2. Thank you all so much! xxxxxxxxxxxxxxxxxxxx P