so good to read that you are feeling better. Dry itchy eyes - not so good...
Great to read that you have recorded your reactions to the Gcsf injections. It might be well worth discussing with the treatment team/oncologist - as they coud be allergic reactions. They would really need to know about them. That they are gone does point towards that.
Wishing everyone a good and restful weekend!
Cookiepuss - yes! I am waking up with a headache too. Some paracetamol, breakfast and caffeine seems to fix it 😉
Just been up the hospital with an annoying cough/cold and have come away with some antibiotics to take anyway because my neutrophils are less than 1 (it's day 11 so no one was surprised). I'm to take my temperature twice a day and before taking any paracetamol etc, and call them at the smallest thing. I am also to avoid other people for the next few days.
Plenty of room although I'm very sorry that you are having to go through all of this again having been clear for nearly 5 years. That must have been a horrible shock for you.
Hope your chemo goes well today if you decide to go ahead with it.
Best wishes and hugs to everyone today.
SALowery - I'm still working but avoiding busy places such as bars and restaurants just to be on the safe side. Whilst I would love to meet up with friends, this time of year is terrible for coughs, colds and norovirus and I don't want to take the risk of ending up in A&E. I'm trying to be careful without being too paranoid.
I'm having FEC-T too - 3 cycles of FEC and then 3 cycles of the T which will also be combined with Perjata and Herceptin. I believe I will then have monthly injections of Herceptin for a further 12 months once the chemo has finished and then probably be on Tamoxifen or similar for several years.
Runninggirl - I do know what you mean about the thought of all that poison being pumped into our bodies. I was debating whether to take some paracetamol this morning for a headache (I seem to wake up with a headache every morning - anyone else?) and then thought hey what's a paracetamol or two compared to all the other stuff!
A day in the Peak District sounds lovely especially if the sun comes out for you.
I think the next sunny day (fed up with all this cloud and darkness) I am going to get my OH to get the convertible out of the garage and go for a drive in the country and let the wind rush through my hair (if there is any left at that point). Obviously if I'm wearing my wig I will need to make sure it is well fixed.
Feeling a bit achey this morning which I think is the immune booster starting to work - they said this may happen.
I also have the indigestion/heartburn back - hopefully my new prescription will be here this afternoon to alleviate this.
Good morning everyone
Hope I am allowed to join this group - I am starting chemo today. I will be on Capecitabine and Vinorelbine. My appointment is at 10:30 at the chemo unit - I have been thinking all week about asking if I can delay starting until after Christmas. Not sure what difference 2 weeks will make in the big scheme of things?
Anyway - my name is Debbie, I am 60 years old, first diagnosed with lobular breast cancer in May 2011 and unfortunately rediagnosed in July of this year. I am a very positive mindful person and hope that there is a small space available in this group.
Best wishes to everyone and may all your side effects be minimal x
Hi SALowery & welcome, not we're you want to be welcomed but my goodness we all welcome the support we get from one another.
It is indeed a scary time and I really don't think anyone quite understands how we feel other than those going through it. This forum makes a real difference, I can't possibly imagine how I would have coped without it. Yes I am lucky as I have my hubby, who has been fantastic and he always uses the term 'we' when discussing anything as it is us going through it but it is still 'our' bodies and minds that is living this nightmare & by ours I mean us here who are willing to share and support one another. Read back through the forum and look at the things we talk about and you will see it doesn't matter what it is someone will be there to support and comfort you.
I am starting day 9 of cycle 1 in the 'chemo house', I am on E&C. I am keeping myself at home to avoid as much as possible bugs etc. Unfortunately a lot of my walk in support have the sniffles so haven't arrived... Well other than my Mum, don't get me started on that! It is difficult but considering the time of year the best way forward. I have to go to hospital for a bone scan on Monday which I am concerned about, not only as it is a bone scan & another wait but because It means injection, 3 hour wait & then back for the scan which can take an hour. I live to far from the hospital to return to the 'safety' of my home. THink it will be face mask, gloves and my Christmas jumper! thanks for the reminder.
Ladies not liking the sound of the blurry vision, I haven't had. I too noticed a bit of a rash developing over my chest last night, so will keep an eye out for that, but then we are on different chemos.
I had quite a restless night last night so after a good day yesterday I will probably be a bit tired today. HUbby is off so we had planned a chill out day together watching some Christmas films.....Oh more tears!
Hope your daughter is okay Snail888 and look forward to an update on the mouse situation.
wishing you all a good day.
Take care & keep well
Hi SALowery and welcome
you are among people who know what you are going through X
I had my first fec six days ago and will have two more fec then t to follow. I dont want to do this either but the alternative just isnt worth thinking about, I am determined to get through this even though it feels utterly barbaric and inhuman.
The isolation is starting to effect me today, I practically leapt on the other half when he walked in tonight for human converstation. Over xmas the family will be here, no idea how christmas dinner will go but my daughters are up for getting stuck in so it will be fine but I will miss being queen in the kitchen on xmas day.
Had a scarey time tonight when watching tv and realised my eyesight was noticably lacking, blurry and off, looked it up on hubbys insistance to find that chemo can do this..scared the pants off me and I had a cry .. not like me to be so soppy and emotional I keep giving myself a stern talking to ha ha
WMJ - how spooky, I said the same thing to my OH this morning that it has been a week since Cycle 1 but it feels like weeks rather than days.
With regard to the funeral, I didn't actually go to my uncle's although I felt terribly guilty about not being there. I was prepared to take the risk but my family and friends were really upset that it may have ended up delaying treatment so I bowed to pressure. I also spoke to my aunt who was also very insistent that I didn't attend. Luckily my brother represented us both which made me feel slightly better. I am sure your friends family will understand the situation but it is a really tough decision to make so I can sympathise with how torn you are feeling.
Snail - I can send my cat over to hunt down the mice if you would like. She is a voracious hunter (5 in one day is the record). She also is very good at the early morning jump on your head wake up call.
I too am missing socialising or just going out particularly at this time of year. I just want to be able to meet friends for a meal and catch up in person.
I can also recommend Corsodyl (alcohol free) mouthwash. It is very good - recommended by the dentist.
Agarside - nice haircut; how I wish I looked good with short hair.
SALowery - hi and welcome. I hate and detest the fact that I have this cancer and the impact it will and is having on my life but am determined to do whatever needs to be done to get rid of it.
I am feeling deprived - I DON'T HAVE A CHRISTMAS JUMPER AND I CAN'T GO SHOPPING TO GET ONE
Beginning to prepare... New haircut today.... Getting used to it now, going back in 2 weeks for more off to get used to gradually.... xxx
oops you did clearly say mouthwash to me but I managed to misread it utterly sheesh ...
ah well I was clearly having a blonde and chemo moment will sort the mouthwash next day or so too lol
OOPS - we got some crossed wired - it was a mouthwash I talked about, lol - not toothpast - I stuck to my usual one,, which is a Colgate Max white.
So glad to read you are feeling more yourself again.
Good on you wearing your Christmas Jumper Snaail888 🙂 You have reminded me I have one somewhere from last year & I am off to hunt it down. X
I counted the day I got the chemo as day 1 so calling this day 7, although not sure if that's right, who cares anyhow last Thursday it was definately in my system from around midday. My goodness it feels like 7 months ago & not 7 days. me & the OH were only discussing that last night.
Does anyone else think of big brother when they say day whatever? I do and I haven't watched the show for years. My OH can even do the accent and makes me laugh each evening by saying
How has day 'whatever' been in the chemo household? LOL we need a laugh girls.
Yes Andreaj, Daisy & all others feeling the same I too feel woozy, drunk or jet lagged! My headache is much better at the moment, well pain across the eyes. I am popping the paracetamols for that but may well have to contact my BC Nurse to see if I can take anything stronger as often they don't help. I drink loads of water too. However I am on these antibiotics, affectionately referred to as the horse pillsby my OH, which he cuts in half for me to take. I have to take them 8 hours apart so currently taking one at 6am, not usually an issue as I am normally awake. It will be a nightmare if I am not as we all know sleep doesn't always come easy to us all.
Snail888, I sympathise with your mouse issue my worst nightmare, well it used to be! Hope your little visitors go soon.
Thank you all for your messages of supprt re our best friend who passed away on Monday. I have learnt today that the celebration of his life is on the 29th Decemeber at 11am, at which point I will be having my second chemo cycle. I have to travel a fair distance for my treatment and they live away from us. No way I will be able to go, even if I felt up to it not sure I should go. Unfortunately my OH won't go either as he says he wants to take me and be with me at my treatment. It was his best friend & I feel for him. I was very sad about it at first but at the end of the day I did what I could while I could and I know he wouldn't want me risking my health in anyway. I have contemplated asking if I could delay the treatment by a day but I do know they generally are not keen to do this.I suppose if they do there is still no guarantee I could go or indeed my OH would. It never rains but it pour hey? Anyone have thoughts on this?
Wishing you all a bright day.
Morning all ( day 6 cycle one fec)
Blimey moses I think I might be starting to feel a bit human again! my woozy head cleared quite a lot last night for no apparent reason and we went for a 20 min walk which I enjoyed the numbness today is minimal and I feel more like me :)) so happy even if it is just for a little while I was wondering if this was going to be it for months and months
Other stuff my hair feels like straw and kind of slightly odd so Im guessing it is preparing to part company which is ok, Im ready for that and it comes back.
skin is dry and Im moisturing as much as I can. Feet are tender and backs of heels feel especially so, so paying lots of attention to them with moisturiser. cuticles are dry am sticking on stuff for nails too twice a day.
mouth still sore and some bleeding in one area but am persisting with difflam mouthwash and have the better toothpaste and soft brush recommended so ..
more energy is good but I still seem to be pretty all over the place wouldnt trust myself to go on ebay or amazon to do last min shopping as I feel I could easily muck it up and end up ordering all the wrong stuff ...still it might be funny to see what turned up lol
daisy .. yes feeling kind of drunk is the feeling I had/have too its going off now so I hope yours does as well, interesting that we both also had the numb sensations in our faces.
cookiepuss .. Yup Im up for that glass of mouthwash, we need something to look forward to lol good plan with the toothcleaning think I will try to start that as well as long as I do it gently it cant make things worse I guess
Sue .. Got the toothpaste at least I hope so it doesnt say pro but says everything else colgate total 12 hour anti bac etc and no alcahol so am using that now .. thankyou 🙂
well thats my report folks
I managed to wrap five presents yesterday .. pathetic but progress and who knows today I might make six woop
Agarside - I think the views of the oncologists vary; mine was quite OK about me working but I am in a fairly low risk environment with few people and my own office. However, I have said that I won't be in the office from Friday for a few days as that is when I expect my white blood cell count to plummet according to the info I have been given.
WMJ - I am so sorry to hear about your friend; it is hard enough coping with losses like this at the best of times but when you are feeling a bit low it is much more difficult. I unexpectedly lost an uncle about a week before chemo and it knocked me even more sideways.
After feeling pretty crap yesterday with terrible indigestion/stomach and feeling very woozy (would not have felt safe driving), I have felt much better today and managed to work from home for most of the day. I managed to go for a 20 minute walk which really helped clear my head and inspired me to do a little housework too. Tender skin has worn off slightly but head a bit tingly. Mind you I was due to have my hair cut this weekend but cancelled as didn't think there was any point but it looks pretty awful at the moment - no life in it at all.
Have just started on the mouthdrops and am religiously cleaning my teeth after every meal.
Looks like 29 Dec is a key date for a fair few of us either being new starters or second/third cycles. Perhaps we can raise a glass of mouthwash to see in the new year!
So sorry to read you have chalenges caused by the injections. However, it could also be a combination of the both. Tingly head - yes, this is usually a sign that your hair follicles are getting ready to 'let go' - so you might be prepared with a head scarf or buff turned into a cap, when it starts to get going, so you do not have a bed full of hair every morning.
It will come ack - I promise! I have had my first, tiny haircut this week after finishing my chemo on Sept 1.
a little birdie told me, that you should be starting your chemo quite late in the month....
I shall be starting the January thread around Christmas - so you might wish to be on that monthly thread, too.
Feel free to pm me, re work, as the 'little birdie' had a few more challenges, than I did.
I did manage to work, but there may be some limitations - will be happy to share off forum.
Hi Sue thanks for your reply, I am not having gsf injections so at least it is not a side effect of that. The numbness in my face and lips seems easier than it was this morning but still uncomfortable and weird especailly paired with the wooziness which is pretty much there all the time now and I dont feel Im exerting myself really.
Will get hold of the toothpaste all being well tomorow. No white flecks that I can see though my mouth just feels rough inside so Im keeping a close eye on it and doing all I can to avoid thrush or other infections. Got a soft toothbrush and using diff mouth wash..fingers crossed it all helps.
My worst thing now is this feeling odd, detatched, and out of it, weird in my head. so Im guessing this is the blood cell issue you mention and I may have to learn to live with it, which is horrible I feel Im nto quite here much of the time and it seems to be getting worse wouldnt dare drive and am being careful in the kitchen etc as I know Im just not that safe 😞
RobinJ and Agarside - sorry to hear about your work problems, especially as you are self employed so unlike me, you don't get any sick pay. I don't know your circumstances, but it might be worth contacting Macmillan for advice on financial support if you find you are unable to work all through chemo despite your best intentions, and you are struggling financially. Here is a link to their site - there is a feature about financial issues on the home page: https://www.macmillan.org.uk
The symptoms you are describing re numb mouth, lips, etc - do seem a little unusual when being on FEC.
Are you being given the immune system supporting Gcsf injection/s? If you are, it could be an allegic reaction to them. This would urgently need to be highlighted to your treatment team, as they would have to reassess to continue with them. The allergic reactions can build over time, i.e. every cycle - and can become worse.
Mouth issues - yes, a sore mouth is so unpleasant. Have you checked whether you have any white flecks in your oral caverty? If yes, you could have a stronger version of oral thrush called mucositis, which can be treatet with antibiotics.
Mouthwash - may I suggest the Colgate Total 12 hr Pro-Guard. It is alcohol free and offers germ protection. It worked like a dream for me.
Feeling woozy from time to time on the FEC regime can happen. Just be aware that it can strike at any time, especially when exerting yourself. It happpens, because of your red blood cell count. Red blood cells carry oxygen to all of our body tissue and muscles. So when the count dropps below your usual level - it can cause you to get a bit woozy or dizzy. The red blood count does not fully recover in between cycles - so be aware, if you are planning anything strenuous.
finding this thread so helpful though its hard to respond individually so please bear with me ... the lady with the mum who turned up with a cold WTF! you so have my sympathies, unbeleivable that she would do that how thoughtless and hurtful (((hugs)))
the lady wearing a mask to be safe, I think you very sensible and have decided to do likewise, I have them for work anyway so they are here and will make a point of making use of them, daft not to since I have them after all I will look odd enough being pale and no hair anyway so I doubt anyone will think any different about a mask as well.
day five or six after first fec chemo and feeling more like me except that I seem to have an odd feeling in my face it feels like my mouth lips and skin on my face are numb and I keep scrunching up my face as it feels weird and wrong, not sure if this relates to the mouth problem I have been having, sore mouth so using diff mouthwash and wondered if that is contributing but it certainly feels weird and I hope it goes off soon feel a bit kind of woozy with it which is unpleasant but I have left a message with the chemo team just to make sure this is nothing to worry about, you tend to think of strokes when you think of numb faces so I thought I better check.
Apart from my head being not my own??!! I feel far better walked 20 mins with hubby last night which was amazing I did once round the block on my own this morning and want to build it if I can
I am also self employed and have just the one client, but Oncologist has made a huge point of not working, even only a few hours a weel with chemo and to stay tucked up at home. This has made me more determined to keep on going.... Guess we will see...