Fairycakes you will be fine, the fear of not knowing is worse then having it.
Antisickness i had emend, domeridone and one with a n sorry cant remember the name, they work but still felt sicky. so maybe i need a different one. I had lots of se 😞 now have difflam for my mouth.
Now have a terrible cough was hoping to be well before 2nd chemo next week.
i am now day16 and sadly now losing my hair, spent yesterday crying as i am dreading losing it. i have a lovely wig and scarfs etc but i have always had long hair which is now short. i know its only for a while and everyone keeps reminding me but your a live which i hate keep hearing i know its true but you know when you just want people to keep there mouth shut and they dont.
i really hope se dont get much worse i have really suffered these 2 weeks and really dont want it to get worse, dreading having anymore as it is 😞
Thanks for the information, I shall download the leaflets you have suggested. Also thank you to the member who pointed out that I might not feel ill until day 3, I had assumed it would be the same day as the chemo.
I made a trip to Boots today and bought some of the things people have suggested like the Lanolips and Difflam, although I'm hoping i won't need them. I do feel less tearful now and ready for tomorrow. Thanks for the help.
Just want to say thanks to Flopsy for posting the useful info on anti-sickness meds - I am due to have my Picc line fitted on Friday ready for 2nd chemo on Monday so this will be very useful in discussions as I suffered terribly with both vomiting and nausea on round 1 and need something better prescribed before I can face the next one !
Hope everyone is coping ok
hi all, well had my first FEC today after much ado trying to find a vein. they have referred me for a PICC line which I'm not keen on but probably no choice. Staff were lovely and the experience was no where near as bad as I thought it would be. Did the cold cap thing too. Didn't seem very cold or painful as I have heard others describe so not sure if it will be of any benefit, time will tell. Feeling a bit woolly headed tonight and tired. trying to divert my thoughts from the anxiety of waiting on something happening.
sorry to hear some of you not having a good time and sending all my best wishes and hugs to you all.
Also meant to mention, I noticed that my FEC is listed as 80 and not 100. Does anyone know why this would be and what it means for me.
Hi everyone, sounds like we are all having such a tough time at the moment. I started getting excruciating head pains, temp 39.8 and shaking all over on Monday, managed to drag myself to the hosp for my ct scan results appt and was swiftly admitted with suspected sepsis. My boob had inflated to twice the size and was so so painful at the wound site. They drained it but it's already started to fill back up again and throbbing pain. Put on IV anti biotics and have been able to come home this evening with more anti biotics.
im so so fed up of being in pain and it's scared me so much I'm on the verge of tears all the time. I'm due for my 2nd FEC on 4th Nov and I can't face another 2 weeks like the ones I've just had....
was due for wig fitting today even though I am cold capping so I have a back up if I do lose my hair, I know it will be this weekend if it does start to shed and I'm already feeling very low.
i literally had just 2 days of feeling ok again. This is so much harder than I expected 😨
Love & Hugs
Flopsy, Thank you for such a detailed description of all the antiemetics....
i'm on metoclopramide and, as Sue has also said, it hasn't worked for me either. My daughter suggested I ask for ondansetron. My nurse is coming to see me tomorrow and I will ask her...
for me the nausea is the biggest thing. I know that compared to some, I'm relatively lucky re side effects and shouldn't complain too much 🤕👍
You asked about sickness. I've finished chemo now but still have residual nausea.
I was sick all through my 3 FEC's and most of my T's. In my case I did need to make a fuss and stop them fobbing me off.
There are at least 5 different pathways in the body that can be tackled by drugs to stop nausea and vomiting. You may need to keep adding drugs together from different groups to get the nausea under control as I did.
That's what I had to do. My clinic was very bad at this.
They expected to give me drug A and if that didn't work drug B etc. I needed to take together drug A. B and C in the end. ABC were only found through trial and error. It was more like A, D and F.... I had to print off as list and then start working through them.
Hope this helps. I used the list on this page
Thanks for the response to my question re Xmas Dinner, it is a very expensive meal and has to be confirmed and paid (my ex boss always pays) by 14/11 which is obviously way the before the actual date, so have decided not to go, would hate the thought of all that money being wasted, thinking about going early and having a drink with everyone instead.
Hugs Mary x
7 days post first chemo ( AC regeimn), feeling quite ok. Mouth soures now, but not that bad. Little restless at night until i eat any anti-acidic medicine. Liking fruits alot speacially pomegrante, but not liking spicy foods any more. Over all i am doing pretty well and my daughter did not take any off so far from work (which she was assuming she has to , to take caare of me 🙂 )
Stay stroong ladies, this too shall pass. Prayers and love for everyone. I am still looking to see if i can drink milk , or it will disturb my stomach.
So glad you have someone looking after you, as the further through the cycles you go - I am sorry to say - fatigue really does get the better of many of us.
As to eating out - it has to be your decision - and you may wish to think about when in your cycle it is, too - i.e. preferrably a couple of days post your treatment (whilst still on steroids) or post day 14 of your previous treatment. Perhaps also no hugs and kisses...If anyone has sniffs or a cold, you may be more likely to pick them up. You might wish to check whether the restaurant has a food hygiene rating. If it has, if may give your husband more confidence.
I still ate out post chemo 2 without any ill effects. Post chemo 3 - I was simply to tired, but did go for the odd pub lunch. Try and stay away from soft cheeses, seafood and salads, preferrably no alcohol, although the odd glass of bubbly might be a good 'pick me up'.
It generally is not about not eating out - just about taking care that they are hygienic places and not eating food, which is more likely to carry specific bacteria, which we might not be able to deal with.
Hope it is of help and hope you feel well eough to go.
After my 3rd session I did not feel like doing anything because that was the day my side effects kicked in and they get worse as you go along. BUT you can tweak your steroids and take a lower dose for longer if you really want to go out.
If it has to be booked and paid for in advance I think I would decline because I would hate to put anyone to that expense and the chances are I would not be going.
Your side effects get worse because you blood count gets lower and lower with each round of chemo. Mine got so low they had to stop chemo early.
I started very late in September so am more in line with this group. I'm at Day 9 of cycle 2 of FEC.
I would make sure your children know that you might feel reasonably OK on days 1 & 2; at least that has been my experience. I feel worse on days 3 to 8 so they need to be aware that if you seem alright at first, you may need more support later.
Compared to others on here, I have got off quite lightly thus far. My couple of tips are:
Wear warm clothes to the chemo. Unless you have a line in, they will need to cannulate you and being warm makes easier access to veins.
Drink loads......during my first chemo I visited the loo 4 times in 3 hours! Probably a record because I was also very nervous but the nurses didn't mind at all even though the drip stand squeaked embarrassingly every time I wandered across the room..........It is good to flush the chemo through as fast as you can. Keep drinking when you get home. It may mean you have to stay in but I'm sure all that through put helped my body cope with the chemo.
I was terrified and the session really wasn't as bad as I thought. Good luck and lots of hugs. We will all get through this and time goes quickly.
As this week is my Low Immune one am trying to avoid people and places where i might at risk, so as the sun is shining I am going to go out for a walk and enjoy it. I have had low points since my first chemo last week but like some of you not as bad as I was expecting (hope I haven't just jinxed it), no nausea but feel really hungover and woozy most of the time, got on the scales this morning and have lost 5lb in just over a week although I am eating, is this normal?.
Sue H-S I am lucky in that there is always someone willing to come with me and on a good day the hospital is within walking distance.
A question, I have read that it is not advised to eat out during Chemo because you can never be sure re hygiene etc but I have been invited to a Christmas Dinner by my old Boss (i took early retirement in March) and would love to go, the restaurant is very highly rated and I would stick to hot food rather than the cold buffet, it is 3 days after my 3rd Session, hubby is saying no, what do you think ?
Best Wishes and Hugs to all
Hello all, I haven't posted here before but have spent an hour or two reading the whole thread and feel I know you all already! I have my first chemotherapy tomorrow and feel rather tearful about it. I am worried that my kids (aged 21, 24 and 28) won't really look after me if I'm I'll. that sounds dreadful but, of course, they have never been ill in their life so really have no idea. My husband is away for work so I shall be reliant on their tender mercies. Of course they are busy, but the oldest is coming home to be with me for a couple of days. I so wish my mother was still alive.
It sounds as though most of you have had a lot of practical support from the chemotherapy team and breast care nurses, that has not been my experience at all. The nurses at the chemo unit have not made any suggestions to what to bring or how to prepare so I'm taking on advice here. Thank you to ask of you who have been so generous with your time and information.
so upsetting to read about the awful side effects some of us are experiencing (I know we're told to expect them, but it doesn't make it any easier to deal with). I think I must be getting off lightly compared to some! One week on, no sign yet of hair loss, I am still nauseous -my daughter is a paramedic and has told me to ask for a stronger antiemetic as the one I've been give 'is rubbish'! Having midcycle bloods tomorrow so will mention it then. Gracie, the yoga I'm doing - you don't have to be bendy at all, I'm 58 and have arthritis in my thumbs so I cannot weight bear on my hands, but I just adapt the routine to suit what I know I can do. A friend sent me the DVD via Amazon 'Yoga for Breast Cancer - from surviving to thriving'. I've done the routine twice now, and found it very helpful - gentle stretches (taking care of scar tissue), simple movements, nothing strenuous. I was actually so relaxed at the end I nodded off!! Worth a try👍
Liz, hope your first Chemo goes well.
hugs to all.
Oh my word, Sudzi, that sounds awful. I can't give you any advice, as I haven't started yet, but I feel you should go back to your chemo unit rather than your GP, as they will have the expertise. I hope they can quickly get it cleared up for you.
Jo, I think we've talked about the mastectomy or not issue before. I cant say I'm really determined - I just cant get my head around what all the experts are saying - that there is no difference in outcomes. It doesn't make any sense to me. I'll raise it again with my consultant. I'm pleased you are happy with your choice.
I had my first round of chemo two weeks ago. It was nowhere near ax bad as I had imagined it was going to be. So that was a bonus.
4 days later I had viral infection, big lumps/spots on left side of my face and neck appeared the next day, don't know if this was the virus or the chemo.
I seen GP but was not given anything for it.
A week after the first round I started to get a sore scalp, it was stinging and I had a lot of blisters on my head. Then on Friday my hair started to cone out and by Saturday morning I was completely bald. I can't wear my wig just now as it irritates my scalp, blisters have burst and now have lots and lots of spots on my scalp. Has anyone else had this?
My next round of chemo is on Friday and I have a head cold, will I still be an'll e to get my chemo?
Welcome Liz. I promise chemo will be nowhere near as bad as you think it will. Just be kind to yourself and allow yourself a few days in bed/on the sofa to recover and sleep. That's all I wanted to do anyway 🙂
sel84 - shaving my hair was actually very liberating and as with most things have been on this 'journey' so far, not as bad or traumatic as I thought they would be. And yes, I also had a very dry mouth and throat, I didn't find anything that made a huge difference other than just keep sipping squash and fizzy flavoured waters. I was told paractemol okay to take as long as you take your temp before you take them to make sure it's not over 37.5.
Gracie - I had a double mastectomy even though I 'only' had a 1cm tumour in one breast. I have a strong family history and couldn't get my head around the worry and stress. I had to push for it and have a psychological assessment but finally got one and am thrilled with the results and feel completely at ease with the decision. I would recommend pushing for a mastectomy if you feel strongly about it.
Sorry you are experiencing some of the more common side effects.
Whether you take Paracetomol or Ibobrufen, both are likely to mask a temperature. You only ought to take them, when really neccessary. Paracetomol would be better, as it is not so hard on your stomach.
Dry mouth - unfortunately the only thing I found helping were small sips of liquid on a regular basis.
As to the possible mouth ulcer - at this time it might be an idea to go for the over counter stuff. But it might be worth monitoring - particularly on the next cycle, as you may develop oral thrush. Ensure you have absolutely faultless oral hygiene and use a non alcohol anti bacterial mouthwash - that may help.
The headache may be due to your follicles 'going to sleep' and it shoud get better, when the hair is mostly gone. Although one may not think so - hair does have some weight - and it appears, that the longer it is, the more likely people experience headaches and sore scalps.
I had my hair shaved off a week before I started chemo - it rather suited me - and now when it is regrowing I am likely to keep it that way. Sinead O'Connor eat your heart out!
Hi all, it looks like I am going to be with you in the October starters after all. Following my chemo being delayed last week, I was seen at clinic today and good to start tomorrow. Obviously apprehensive but reading all your updates has been informative and useful for me. Fingers crossed for not too many side effects. Big hugs to everyone
Just to add, I start tomorrow. My port was checked today and the surgeon was very pleased.
I'm still a bit concerned about why I haven't had a mastectomy. I have had two different breast cancers in a year and I know this one is as aggressive as it is possible for a breast cancer to be. I really can't get my head around how it can possibly be as safe for me to keep my breasts as it is to get rid of them both. I find it a bit baffling.
Sam, thank you for letting me know how you got on with chemo whilst in ketosis. There seems to be some scientific evidence behind it (although my oncloncologist is not a fan), and there isn't any harm in it, so well worth a go. Good luck with your next chemo.
I was going to set out what it means, but I see Blueash has given an excellent explanation. For those of you who are interested, it doesn't mean you have to starve yourself, but you have to avoid carby foods, so no bread, potatoes, rice, pasta, cakes, etc. In fact, you really need to check the carb value of everything you eat, until you get the hang of it. Be aware that you will get headaches for a day or two, but once you are in ketosis, you can feel really well on it. A bonus for me is that it might help me stop putting too much weight on. I'm already overweight and was gradually losing weight before diagnosis. It's not about starving yourself at all - there are lots of lovely things you can eat - fresh cream, for instance!
Having said all that, it might not work for me and I may end up eating cake and biscuits all the way through.
Mary, your experience with that nurse was absolutely shocking. You are NOT being awkward. I'm pleased it has been sorted out for you.
Suebond, I have been thinking about yoga. I don't bend very easily, but I'm willing to give anything a go!
you are not being awkward at all! I am so glad to hear you have been able to put things into place.
Do you have someone who can take you to the relevant appointments? I do hope so, as further down the line, you might be too fatigued to drive - that is one of the reasons, why I had to fall back onto the community team. They were absolutely brilliant - not always on time (which is understandable) - but brilliant.
Hoping all stays well and that you are being treated the way you should be - i.e. with a lot of care. We so need it at this time.
Jo i started bleeding today too, i was expecting it all to stop so seams like having chemo wont effect either fertility or wont send me into menopause. your 2 days infront of me i aint started losing hair yet but know it will be soon.
Mary omg what is going on you do seam to be having trouble, one reason why i would rather not have a picc line as having it flushed seams so much a lot of hassle.
how is everyone else doing. xxx
Have had a call back from the MDCU re my Picc Line appointments, spoke to the Ward Sister she was so apologetic and said that it was totally insensative and out of order, now have appointments right up until the end of November for both flush and bloods, if the community team come up with something i can get to then I will go to them.
Still feel like I am being awkward, but thats me unfortunately, just hope nobody else is upset the way I was.
Ok about ketosis. If you cut back on carbs for about 48 - 60 hours your body will go into a state called ketosis. It is the basis of many weight loss diets including the Atkins and the South beach. The theory being that if you do not give your body energy via your food your body will spend what it has stored on your hips, thighs and tummy. You have to go below say 50 grams per day which is not much at all.
If you don't want to lose weight and want to limit chemo side effects you can fast for 48 - 60 before and 12 to 24 after then eat normally. You will also be in ketosis.
Now then if you want to lose a lot of weight you will have to eat something so you limit carbs for weeks or months. If you only want to stop side effects you can either fast (definitely works for me) or try limiting carbs which may or may not be as good as fasting depending upon you as an individual.
Low carb eating can be sustained for very long periods of time. Fasting cannot. Both put you in ketosis.
Put the name Valter Longo into a search engine and read up for more info.
welcome to the thread - mind you in some ways, you may wish to jointhe November thread, which was put up yesterday. I do not think anyone is on it yet, but at a good guess - will be soon.
However, you might the information, which starts the thread off, helpful.
I might be wrong - but I guess that the DH - stands for Docetaxel and the H for Herceptin.
So it might be that you are getting FEC-T chemotherapy - 3 x FEC and 3 x T And Herceptin injections?
It may be wrth asking your treatment team about this,
Here is a link to information about FEC-T - https://www.breastcancercare.org.uk/information-support/publication/fec-t-chemotherapy-bcc233
Please remember - you are unlikely to get all of the side effects - it is very individual and depends much on your age, general state of health and underlying issues. So you may not wish to over prepare.
I certainly would suggest some ginger to help with possible nausea and Senna to deal with likely constipation on the FEC. Drink at least 2 litres of water before your first session - and continue having 2 litres per day throughout your cycles.
You may wish to make decisions re cold capping or prepare for losing your hair. Should you not deide to cold cap, getting your hair cut as short as you possibly can, before you start your first chemo can be of much help. As it eases the symptoms of itching,soreness of the scalp and headache, when the hair follicles 'go to sleep'.
I hope all goes well for you - you are i a great place for support and asking all the niggling little questions you have, when you start your treatment. Please also post, when you are upset or not feeling well - we are here to help as much as we can.
Im starting Chemo on 31/10 - next Monday!! Eek it all seems so real now. Been told it's FEC-DH, not really too sure what that involves, but so glad to be getting the ball rolling.
Been told that I will be given bisphosphonates tablets too as well as injections to ensure white blood cells don't drop too low.
Feeling anxious but at the same time want to get it over and done with.
Good luck and hugs to everyone xx
Unfortunately I cannot answer your question re ketotis -I think that is something to do witha specific fasting regime, some people use.
I personally prefer to eat healthily and balanced and found lots of little meals, especially toast, waterbiscuits - i.e. carbrich foods, helped. However, I would suggest you have a chat with your chemo team, as they may give you different medication to help with your nausea. It should not last that long. Tiredness and/or fatique, unfortunately cannot be dealt with medically. It is, what it is in the first 10 days or so. The body has a lot to contend with, considering what chemo is and does- so it is quite normal to feel like it for many.
Rest as much as you can during that time and be kind to yourself.
So upset that you have to be treated like that. I think you need to phone your bc team, don't assume it will be sorted for you.
Sending hugs x
Just back from hospital I am so upset and angry right now I feel like screaming, had to have my line flushed at the hospital today as the closest Community appointment was a 30 mile round trip and forgive me but I am not up to driving that at the moment, asked the sister about my next appointment only to be asked if I drive so I explained about the distance and then told 30 miles is not that far and besides it's quite a pleasant drive, then to top it all the sentance " don't I realise every time they do Picc line flush at the hospital it takes up a space for a chemo patient", I just walked out in tears and realised when I got home that I have no idea who to call about a new appointment.
Of course I know it's not ideal doing it at the hospital but she has no idea about me or my circumstances, I have actually put off phoning the Chemo Unit a couple of times about things as I didn't want to waste there time, so what do I do, do I wait and assume she will pass my details to the Community Team who will contact me or do I ring the Chemo Unit in the morning and get them to sort it.
wow mary you lost them really fast.
i am day 13 now and well i have small itches i have not lost any hair anywhere yet just normal shedding totally dreading it thought, i know its going to be a cry all day day when it happens 😞 i dont know why i cant just accept it and get on with it. without my hair i am nothing 😞 i feel so naked. xx
the hair tends to go from everywhere - and I mean everywhere.....
Usually it takes about 14 days for the scalp to feel itchy and/or sore - which seems to be the sign that the follicles are going to sleep and the shedding is likely to start.
A good idea would be to have a sleep cap, light weight beany or something similar for going to bed. It might avoid having to find all the lost hair on the pillow and having to hoover the bed.
Some lose most of it towards the end of cycle 1 sometimes some of it hangs on until during cyce 2.
I lost all body hair, however another lady going through exactly the same regime - kept her leg hair, much to her annoyance, lol.
You are all doing so well facing this - I guarantee you - it comes back! Mine is growing again - all over - and it is not patchy. Slighly different colour - not blond, but dark and white, lol. I have eyebrows again (7 weeks post last chemo) although they are not growing in the right direction! - Taming required! And I have used mascara for the first time, since I started chemo. Very short lashes - but lashes all the same!
i slept/lounged most of the weekend too. Am day 6. Still nauseous, but got my husband to take me out for a quick lunch today - nothing huge, because I'm eating 'a little, often' with the nausea. Tablets helped at first, but don't seem to be very effective now 😒 Intend speaking to my nurse.
No hair loss for me yet, but I think it is 'early days', but am keeping my fingers crossed as I am cold capping.
managed a simple 'yoga for breast cancer' session today (at home), and it certainly helped wake me up a bit! Am preparing a base stock now in the kitchen!! Am normally very active, and finding it hard to 'look after myself' and stay at home. Trying to find the right balance.
hugs to everyone having a treatment this week
I've been reading this forum for a while but this is the first time I've written on it. I was diagnosed end August with ER+ and PR+ grade 2 tumour which had spread to 2 of the 12 lymph nodes that were removed.
My chemo is EC-T (so I don't have the 'F' of the FEC) with 3 cycles of EC then 3 of T. Had my first chemo on 6th October and, like you are planning, I am low carbing and was in ketosis for the few days before chemo and continued doing it after. I have keto sticks which you wee on which measure if you are in ketosis. I resisted all the snacks they bring round in hospital and had an omelette when I got home rather than anything to eat whilst in there. For me, I'm sure it had an effect as I've had no side effects at all, and have felt completely normal throughout. The oncologist was quite baffled in my follow up appointment! I've done loads of research on this since my Mum also has breast cancer and I'm the sort of person who has to try and find ways to complement standard treatments.
I've got my second chemo this week and have made sure I'm back in ketosis so I'm hoping for the same results. I wasn't going to post until after that in case it's not so good this time and the first time was just a fluke but seeing your post I wanted to give you the encouragement to try it.
Good luck for Wednesday!
Feeling slightly better today having slept most of the weekend (literally), spoke to the Unit this morning about the sudden change after stopping the steroids and they have said they will probably keep me on them longer with my next session. Have lost hair to my eyebrows, arms and legs and have thinned a bit on my head so far so good.
I did think about fasting but decided it wasn't for me, so will try small snacks and Miso Soup which I have heard is very good, strangley enough have completely gone of Coffee so just drinking water and fruit juices.
Hospital this afternoon to have my line flushed and then home to catch up on some TV, unfortunately my son is having day surgery next week in Liverpool and I live in Sussex, normally I would go (he lives on his own) and make sure he is ok (I know he'd probably rather I didn't) luckily the hospital have said he can have a bed for the night and then he will come down here for a while, happy happy joy joy (silly I know).
Hugs and Best Wishes
Thank you, Sue.
Yes, I'm sure you are right about the food, but I thought I would give it a go.
Just about everyone seems to think the risk to my right arm is very low as I had just the two sentinel nodes taken from the breast area. I had 19 nodes removed from under my left arm, so I seem to have plenty of them. I'm very very very right handed though, so am more concerned about that one. I have allowed blood pressure readings to be taken from my right arm. Should I make a fuss about that, do you think?