Thank you so much for the advice. I will certainly ask (can I insist?) Chemo is bad enough without vomiting all the time. I realise you get side effects but just didnt think the vomiting would be so severe. Is it worth me ringing the hospital first to ask if I can have the tablet so they would be prepared. I am trying really hard not to get myself worked up about it but I just keep having flashbacks of the Wednesday night and thursday morning and thats all I can see. Is a runny nose normal? sorry for all the questions. Hope you are feeling ok.
Karen
Yes I think you should ring and ask for it - I actually said that if they wouldn’t give it to me I would pay, but it didnt come to that. I think you start asking politely and get firmer if they try not to offer it to you. I know it sounds a bit pushy but if you don’t push you don’t get. I would have liked to have thought that they offer it to all that had a bad experience with vomiting the first time round. It is possibly a cost issue (I don’t know).
I am not sure about the runny nose - I think it is a side effect. I know that it can be when the hairs start dropping out (including any nostril hair!!).
Don’t worry you will feel better soon I am sure but be strong, take control of the situation and ask.
Lynn
My brother got held up at the bank so he was 3 hours getting my anti -sicks - got ondanesetron for few days and anti-histamine cyclizine stopped the domperidone and started these. I have evil PMT type symptoms now ranging from being understanding wife one minute to needy, ratty, snivelling jump down your throat nasty woman the next. My OH suggested I went to bed at 5.30pm. So I did - in a rage - but I just wanted him to cuddle me and tell me everything would be alright! No such luck. I woke up at 8.30pm and he had gone out (I had told him to when in understanding mode) and my brother was actually quie understanding about how I feel - from the amount of drugs in my body. I gradually felt unsick enough to have some lentil soup. T
ried to talk to OH when he came in but it’s like his body is paralysed he can’t seem to be warm and cuddly with me and still did not talk - just listens smpathetically. I have offered to give him helplines and things - why have I got to make all the effort!
I have arranged for us to visit friends in Cornwall next weekend (we live in SE London/Kent so a long drive) - if I am well enough - will I be ok to go to Eden Project or should I avoid because of immune system? I will be on day 13 (panic/hairloss???).
Do I sound like a mad woman - I feel like it - slept from 12-30am - 4.30am and been on here since - will start taking more drugs soon. Love to all - another rant over - Lyn xxx
HI Gemjunkie et al - or should we call you Madwoman from now?
I had my second FEC yesterday and am now in mid-bleuuuuch feeling. It’s so awful. The first night is the worst although I did manage to eat something and forced lots of liquids down. I slept ok except that I took senna to prevent the dreadful constipation I got last time from the ondansetron and it woke me up through the night with awful cramps and the rest. We can’t win, can we - dammed if we do and dammed if we don’.
So now drugged up to the eyeballs with the sickness held at bay but lurking in the sidelines ready to pounce. Taste buds have gone already and I’ve got a dreadful headache.
My onc prescribed lorezapam for me yesterday - he said it helps with anxiety and can calm you so the sickness doesn’t feel so bad but I haven’t taken it yet - I feel I’m taking so many drugs I don’t really want to add to it unless I have to.
My onc also said that I am currently having pretty much the best anti-sickness cocktail but that there is another better drug available - but only privately, not on NHS unless you can get the GP to prescribe for you. I don’t know the name but it might be worth asking -if it’s not too expensive it might be worth the cost.
If you are actually vomiting there is no way you should put up with this - the nurses should refer you to the ward doctor or your onc to get the tablets adjusted. I have ondansetron (antisickness)for 5 days (but don’t take for 5 days), metoclopramide (antisickness) for as long as I want (all three weeks but I only needed three days), dexamethasone(steroid) for 3 days, lorazepam for sickness/anxiety (haven’t taken this yet), Fluconazole and Nystatin for thrush (which I hope won’t come back this time) and omaprezole for indigestion, plus paracetamol for headaches and whatever anti-constipation drug I can lay my hands on. No wonder I feel like a walking drug cabinet! Are we all on the same drug combinations or do we all take different things? I feel it often depends on the NHS trust and the individual onc.
Hayz - that comment about walking home from school did make me wonder if you were a 14 year old! I hope the OH didn’t get too much of a shock with the bald look. LOL at looking like your brother, that’s a scary thought.
My hair is still holding on but only just, it does fall out quite a lot and I’ve got acne all over my hairline and my scalp which is annoying. My onc said it would all fall out by the end of treatment - thanks for the encouragement and support!
Keep your chins up and may all your side effects quickly pass
Helen - I had been thinking of you yesterday - Well done, you sound quite yukky but quite perky. You were asking about if we all got the same drugs, mine are exactly the same as yours except I didn’t get metoclopromide. Helen I found that taking the lorazepam the night before and the morning of the chemo quite helpful (that’s the only time I’ve taken it). It is a short acting drug but it helped with sleep the night before chemo and it reduces anxiety by lowering the adrenalin on the day of chemo (I took it late morning on the day of chemo and had the chemo pm).
Gemjunkie - and anyone else that had a bad time particularly with the vomiting, I have been talking to Karen also who had a bad experience with this I think the tablet you are talking about Helen is Aprepitant or Emend. I only found it initially by trawling this site and then googled it. It is not widely publicised - as I said in my previous posts this may be a cost issue. I was given it (because I have a phobia of vomiting) and it worked. I was nauseous for 3 days but no vomiting. I would urge anyone who has had a bad experience to ask for it. When I spoke to the pharmacist I thought she was not particularly empathetic - she said something like ‘it is rather unusual for you to be getting this drug, it is normally not given out routinely’. I felt like saying you have this bloody cancer then and vomit all night long! (I was close to saying it but didn’t).
Helen - hope all the side effects improve quickly for you
Gemjunkie - forgot to mention, my nephew had a non-hodgkins lymphoma and was having 2 years of chemo. We all went to Cornwall for a holiday together a few years ago. He unfortunately developed a temperature at the end of the holiday and had to go into hospital there. I would say go and have a good time - but if you needed any back up it’s Truro Hospital that dealt with him and they were great.
Are you able to get emend on prescription from your GP or is it only available from the hospital? My consultant is not very approachable in fact I found him quite rude on my first visit to him. I have the feeling that if I suggested this tablet to him, I would have the response of - Im the consultant you have what I prescribe! thats how he comes across. Instead of focusing on now Im panicking about the 6th Oct with the dreaded 2nd Fec. Hope you are feeling ok and side effects are not too bad.
Karen
I am not sure whether you could get it from your GP - you could try, but if you find your Onc unapproachable then why don’t you ring your BC nurse and have a chat with her (it would be better to sort it out sooner than later). I wasn’t overly impressed with my Onc’s lack of empathy but you have to be brave and ask. I would urge you to try the nurse first on Monday morning - you have nothing to lose.
Thanks - all my side effects went on day 8 - just tired from lack of sleep.
Lynn
Morning my lovely FECers, hope you’re all feeling perkier today? Sounds as though we concur that nausea, vomitting and woolly mouths are evil?
When I was at day 1 and was reading comments by those of you about day 5, I wondered how on earth you could all be so bright and well sounding. At the time, I had firmly resolved that I would stay in bed until January. Now that I am at the beginning of day six I feel quite different - thank God!
The next challenge we have is getting our butts back to the chemical pie factory in order to subject ourselves to more of the same. I guess tho that with each passing day we’re another day stronger (so more able to cope) and another day closer to leaving this all behind?
Can’t say I’ve had many chemo brain moments but sent a panic text to a friend last night appologising that I hadn’t let her know I wouldn’t be at her 30th birthday party which I thought was this weekend- despite knowing in my head that she’s I America. Her reply was very sweet and wonderfully tactful, as she gently reminded me that her party is in October!
Hope you all enjoy your weekends and that you feel well.
Hi everyone, I can’t tell you how much happier I feel after reading the posts here. I start FEC-T this coming tuesay and to say I feel terrified is an understatment! I’m trying to work out how I am going to be able to voluntarily submit to the chemo chair when I feel so good and know it will make me feel so bad!!! I am 7 weeks post surgey (mastectomy) and really feeling like I’m ‘me’ again. You all sound normal and sane so you’ve given me hope!!!
Is anyone taking any supplements that are helping them? I was very keen to try astralagus after reading Suzanne Olivier’s book but the hospital has said no to that and to vitamin C. I feel like I want to be proactive but I’m not well versed in alternative aids. Any thoughts much appreciated. Thank you all!
This site has helped me enormously too, you just feel you are not alone in this awful process.
I have read a lot of stuff too and been on the canceractive website run by Chris Woollams - he is very much into helping the body and boosting the immune system through natural plant supplements. However he does rather advocate rather a lot of supplements and it actually leaves you feeling a bit confused. I have spoken to the pharmacist at my hospital about supplements but everyone is so non commital (I think it’s because they just don’t know). She said just a multi-vitamin would be ok. Unfortunately there has not been enough research into the benefits of plants because you can’t patent plants and therefore there is nothing in it for the greedy pharmaceutical companies. My feeling too is that the medical team look at your treatment from one angle only - ie the drug angle. It’s a pity there are not more oncologists that have an interest in herbal/plant supplements that could run alongside chemotherapy! I was keen to try a few things too - one being a honey called Life Mel. The bees are fed on herbs and plants rich in vitamins, minerals and flavanoids and they claim that if you take this honey twice a day 5 days before chemo it can help prevent neutropenia. I have been told however not to take it as it might interact with the chemo they are giving me. Having said that after taking so many anti-sickness drugs in the first 3-5 days it’s nice now not to be taking anything for a while.
I am not sure this really answers your question really! But good luck for Tuesday.
Lynn
HI Tess
you have my sympathy - I found it very hard inflicting this chemo on my body after I felt fine and back to myself after surgery. On day three of my second cycle and feeling awful - sick and washed out and totally fed up. Thinking that by cycle 5 I might be totally sick of life altogether. The only glimmer of hope is that I might start feeling better in another couple of days like I did last time around.
As for supplements - I don’t really believe in them. Some of the books I have read - and they are all so contradictive - are very against supplements as not having the full power of the plants that they come from. And who’s to know what they are actually made from - can you trust packaging? I think it’s much better to just eat a very healthy balanced diet - loads of fruit and veg, wholegrains etc. I borrowed a series of books from the library when I was diagnosed - the Jane Plant book, The breast cancer prevention diet, nutrition, foods to fight cancer, coping with chemotherapy and they all effectively say different things other than we should all lose weight as obesity is the biggest known factor in breast cancer! I don’t really know what to believe any more - should we eat dairy products or not? Are phytoestrogens good or bad for us? To be honest, I’ve eaten my five a day for years including a lot of the so-called superfoods and soya products. I’ve never smoked, don’t do junk food or drink loads or binge drink, I’m fit and healthy and I have no history of any cancer in my family and look where I am? Who knows why I contracted breast cancer? It’s all very difficult to understand and somewhat depressing.
Sorry to be gloomy - let me know if you find anything good which works for you and maybe I’ll try it too. I’m finding it hard to be enthusiastic about food when I can’t taste any of it!
MMmmm I know what you mean Helen. I think it is luck of the draw, there are so many factors that don’t make sense. It doesn’t seem to matter what you do. I think it’s just how we get through it that counts and trying to enjoy our life as much as possible!
Seems a lot of people have been feeling unwell, i suppose the good thing is that is passes and you feel fine again, which make the whole thing about going back in to be made ‘better’ and ‘ill’ at the same time more distressing! Have been at work all week and doing ‘normal’ things, going on the tube, eating out e.t.c. It has been fantastic, don’t want to go through the nastiness another 5 times, but we have to i suppose, and it’s not forever!!
Thanks for all the information about the drugs, when do you get to see your onc? i only see the registras and i don’t know how much they can decide. Can you just phone up and get to see them? If anyone is in London and fancies a night out at the theatre this week to cheer you up, PM me !
P.S Sorry, i didn’t mean with me!! The show i work on has some free tickets going this week (better not say which one could get in bother!) but it’s good ! Would be lovely if it could cheer a couple of people up! xx
Hi Trumpet, what a lovely idea to go to a show. Don’t think I’m up to it this week though, trying to cope with side effects at the mo. I might take you up on the offer, though if it is repeated at another time!
I see my onc every three weeks - just before I start the next cycle. He checks how I am, how the side effects are and what drugs might need adjusting. Either he or the chemo nurses check my bloods and then off we go to the chemo ward. I do everything all on the same day, which makes for a very long day, but reduces hospital visits.
Depressed today as I’m going to have to give up one of my new jobs - I was offered some design work having been made redundant during diagnosis and recently set up my own business. But I just can’t keep to the deadlines, the chemo week just washes me out and I have no concentration and although I can work for some of the time it is no good to deliver work to people. I was tossing and turning most of last night (amongst night sweats) worrying about it and I just don’t think I can do this. I hate letting people down but the stress just doesn’t go well with chemotherapy so I think I’ll have to stop. If I still had a job I am sure I could still work quite well for 2 out of 3 weeks but this isn’t working. I’m feeling the pits, got no money, no job and not much of a life. And I’m bored! Having worked all my life I don’t have a set of friends to meet during the day or to go and visit. Day time TV here I come.
Sorry for moany rant, can’t quite get it together this morning.
Did anyone follow the Katie Price forum and watch the comments on BBC breakfast this morning? I have been following from the start and was glad someone finally spoke up about the inappropriate use of plastic inflated so-called celebs to promote breast cancer awareness. You can follow the thread on the ‘your views’ forum.
Helen…chin up Girl…this won’t last forever & we’ll be out the other side before we know it x
I wanted to work 2 weeks out of 3 during my treatment (I only work 17hrs pw), but my consultants have advised against it & I s’pose I have to listen to them! I don’t imagine I’ll feel quite so human by the time I’ve done 4 FEC & 4 TAX either, so prob for the best that I stay off!
Having 3 kids I work evenings, so daytimes aren’t too bad for me, but I do miss my work colleagues. I need to sort out a social life & get out the house more…too much Nick Jnr & Playhouse Disney right now!
I have my second FEC on Thursday & am starting to get a little jittery about it…can’t wait for it be over…am dreading the nausea & stomach cramps that are sure to follow…ooh & the furry mouth!! I have my freezer stacked full of ice poles & every flavoured jelly available ready to make on Wednesday! LOL . I’m going to ask them to change my meds this time, as I don’t think the Domperidom (spelling?) really had any affect…maybe the Champagne of similar name would be better ;o)
I also had bloods done on Weds & have the huuuugest blood bruise on my arm. It’s not caused by my haematology condition, so it must be the Chemo wrecking my veins…already!!..I’m not looking forward to 2 lots of needles this week…need to stock up on the Arnica…& need more Aloe Vera too(I’m keeping Holland & Barret going at the mo! lol)…I’m slapping the stuff on my spotty skin like it’s going out of fashion! Does the job tho!
Anyone been or going to the ‘Look Good Feel Better’ Workshop? I’m going tomorrow, so that’s a wee something to look forward too. I’ve heard it’s really good & you get a fab wee bag of goodies to take away! Will let you all know how it goes. I’ve heard the wee woman up here looks a lot like Dame Edna Everidge so it could be interesting!!
Trumpet, I would love to have been able to take you up on that offer…a night out to the theatre would be fab…trust me to live at the other end of Britain!
Re the Tickled Pink & KP thing on the other thread. Yeh, I’ve been following it & posting from the start. I wrote to Asda after watching What Katie did next. I only watched it to see what all the fuss was about, but I found her comments upsetting, purely because they were made during a shoot to promote BC awareness. I posted the response I had on the thread also…think I was the first one with the mass produced reply!! Also watched the wee video on the BBC24 news…didn’t the ladies do well!
Anyway…off to stick on a scarf & go get my boys from school. Can’t do the bald look in this cold, windy weather!! Like a bad ice cream headache, but without the ice cream! Anyone else looking like a baby chick? I wish the whole flipping lot would just go! I look like a patchy GI Jane!! LOL…and what’s with people rubbing your head??? PMSL! My husband does it all the time & so does my oldest son!! Bizarre…they don’t even realise they’re doing it!
Hayz is right Helen, don’t be too hard on yourself. You’re in an astonishinly adverse situation at the moment. I was hoping to do two out of three, but my first cycle put me in bed for a week, so this week I’m recovering from that! This leaves me one good week to put in some sort of an effort…possibly
You’ve obviously got balls, so maybe you could just do enough to keep you stimulated but not so much that you have bad nights? Bit tricky for me to envisage how your business works, but you’re obviously good at what you do, and if your clients are worth having, they’ll keep you in mind for when you are firing on all fours.
What’s the deal with jellies & ice poles? Do they get rid of the fury mouth? Mine is still horrid in so far as I can’t taste anything. Also anyone know when their immunity drops…I’ve been told days 10 - 17 but I’ve also been told days 7 - 14. Any symptoms other than a bit of fatigue to look out for?
Not fluffy on the bonce yet, in fact I’ve been so bold as to book an appointment for a trim next week. Keep imagining I’m going to get up in the morning and there will be a hairy outline of my body laying on the sheet; and I’ll be pink and shiny all over! Perish the thought!
Trumpet - would have loved to have gone to the theatre as have been feeling pretty good since day 8 - but just when I am ready to exercise, play a bit of tennis etc I’ve gone backwards again. I am really fed up - my Onc asked me to get the mirena coil removed prior to chemo (I had it for very heavy periods) and for the last 3 days I have had uncontrollable bleeding. I have now got to see a gynaecologist this week and have another general anaesthetic in between my chemo treatments! I am SO fed up. Just when I thought I was feeling better I now feel floored again.
Helen - hope you feel better soon
Hayz - good luck for Thursday
Trumpet - thanks again for the offer of tickets.
Sorry for moaning - gggggrrrr
Lynn
Immunity is at it’s lowest from days 7-14 then starts to pick up again. I had my bloods checked on day 14 & my white blood count was way low…hopefully it’ll be back up again this week in time for my next dose of Eugh!
Touch wood…I’ve had no more SE’s since the end of week 1, other than the odd spell of feeling tired. My taste buds have gone a little again over the last few days, but nothing like they were during the first week. All in all physically I’ve not been too bad…just hope that emotionally I can sort myself out!
Jelly & Ice Poles?? LOL
I’m rubbish with liquids & barely managed to drink anything for the few days after my first Chemo, so I had the worlds furriest tongue by day 2! I ended up living on soup, ice poles & jelly until I felt better. Those were the three things my Chemo nurse suggested as they count as liquids too and they worked fab, within a day the carpet had gone from my tongue!!
Lynn, I had to have my Mirena out too…by a MAN!! PMSL! I wasn’t chuffed…after having nothing for almost a year I had the period from Hell alongside the worst case of acne known to man!..all in time for week one after Chemo!! What fun!!
I have to say tho that it has crossed my mind that it may have had a part to play in my cyst changing to a cancerous tumour, as the timing seems to fit, but then I s’pose I’m just looking for a reason for all this to be happening. My BC isn’t even Hormone Receptive!
