Hi everyone,
Had my first t on Wednesday it was alot quicker then the fec went ok even managed to go shopping afterwards,had no nausea but constipation again then really bad diarrhoea ? do feel really tired though finished my steroids yesterday and start my g-csf injections today so Il see how it goes I usually crashed on day 3 with the fec,I’m hoping I dont get a chest infection with the t ive had one every time on the fec so wasn’t getting any good days really before i was having my next one.
I can relate to the chemo brain! Its a nightmare I can be mid conservation and my mind just goes blank! And we all have a right to feel miserable and sorry for ourselves sometimes, with what were going through and we all know what its really like so we have a mutual understanding of this crap journey! Good luck with those who are starting T and hope its not going to be as bad as we all fear. Xxx
Welcome to Day 4 in the the house!! Round 4 of 6 chemo and 1st T!!
To be honest I hadn’t felt too bad until yesterday when I had the first of my seven day course of Filgastrim injections. On the oncologists advice I had been taking painkillers to pre-empt any possible pain since I had chemo on Tuseday and was fine with that.
This morning, although I feel fluey and achey - the pain spasms are bizarre! There’s no knowing where they are going to come from - even my operation scars have been hurting!! - it’s not all the time but I have visions of someone with a voodoo dolly of me poking me with a pin just to remind me just what this is all about. :catlol:
Thankfully our lovely grand daughter decorated our tree and living room yesterday so now we can begin to feel a little more festive now. Not being at work has really brought it home to me how much I miss all the little preparation bits towards Christmas - I’ve missed the decorations, fundraisers for charities, silly jumper days and carol concerts - all the traditional bits and pieces and even the Works Christmas Dinner!! Next year will be totally different as all this rubbish will be done and dusted!!
I’ve had to cancel a night out tonight to celebrate hubbys’ birthday yesterday but as a consolation he’s going to the chippy instead!! He can always find a bright side or funny view to the rubbishy bits!!
Hope everyone is feeling okay!
Swampy
Hi Angie,
How have you found the herceptin and T?
I am due to have my herceptin on Thursday and T on Friday…not looking forward to it, I think it’s the unknown again and I want to be able to enjoy Christmas. I was told that I would need to stay at the hospital for 6 hours after the herceptin in case I have an allergic reaction, did you have to do this? Also, how are they both given, is it through a cannula like the chemo, if so do they leave the cannula in for the T? I have read that you can herceptin as an injection in the thigh.
It seems our oncologist’s say different things, mine said that the main side effect with T is that your immune system is lower earlier on in the cycle and that I may feel more tired. Having read the comments on here it seems that there are more aide effects than that but I suppose everyone is different.
I am worried about my appointments this week as I had trouble with my veins last time, it appears my veins don’t like needles! As soon as the needle went in, my vein would disappear or they couldn’t get the whole needle in! This started to stress me out which of course doesn’t help.
But I and some of us are half way or more so the end is in sight.
I hope everyone is feeling a bit better today x
hi everyone,
I have been following your posts daily - it’s good to know what’s coming up & the variety of possible reactions and side effects (even if it is a bit grim). better to be prepared I feel.
I had my 3rd EC about a week and a half ago. it was delayed a week due to low neutrophils & blood levels & I have had to do a week of g-csf injections like many of you. From about day 6 of injections I have had a rather ‘loose’ tummy (to put it as nicely as I can). is that a side effect of the jabs? has anyone else had this. I went out for a meal for my sisters birthday & dont know if i ate something bad, caught a bug or am just reacting to meds. I find it’s really hard to tell if symptoms are side effects of the treatment or something else to be more concerned about.
Re the nausea & taste changes, mine also seem to last about 10-11 days (so far). I have found lime cordial ok and also a tesco finest Chocolate Tea. of course it doesn’t taste anything like chocolate to me - more like vanilla or custard! But it’s not unpleasantly sweet/odd like water or normal tea.
Sel84: do they wrap your arm in a heat pad before cannulating (& during chemo)?
Love & hugs to all
At least we can hopen for some nice films on TV over the Christmas period.
Karen xxx
Sorry you are suffering Angie. I hope the se’s will settle down and get better soon. Our poor bodies do seem to be getting a bit of a battering 
Lots of hugs,
Sue F xx
Hi everyone. I’ve not posted for a while but have been logging on everyday to catch up. Glad I have because it’s so comforting to know everyone else seems to be experiencing the same side effects to some extent or other. I had my first T last Thursday and all went ok on the day. Friday morning I felt fine, even ventured out for a coffee, pleased that I had no nausea that id had with the EC. However my smugness was short lived as yesterday the fatigue set in and today I ve been hit with the proverbial train. I am aching all over and have the most ficious sharp stabbing pains occurring randomly. The area around my MX is really sore , my mouth and tongue are both sore and everything tastes awful. I’m taking paracetamol which is helping a bit.
So, have just had a duvet day( thank goodness for Net Flix) and seeing what the next few days brings. Angie you’re not the only one buying the ice lollies ! I’ve found these and jelly have helped a lot even with the EC.
Its the first time in years that I’m not cooking Xmas dinner this year as we’ve been invited to our sons so just hoping that things have improved by then so we can all enjoy the day. Thanks to everyone for the support I’ve found on here and I know will continue. Really hope you all have the very best Xmas you can , wishing you a very happy Xmas and best wishes for 2017. Karen x
Morning all,
Sorry to hear so many of us are suffering even more; the side effects seem to have really ramped up. ? I’m making a mental note about the ice lollies - if all goes to plan I should start my accelerated T mid-late January. Have to say it all sounds pretty sure scary.
Gracie I hope you have a lovely time with your folks; it’s lucky that they are coming at a time when you will hopefully be at your best.
Sel84: enjoy Christmas dinner at your sons. Could be quite nice to have someone else do the work for a change if, like me, you always end up hosting.
Good luck, and wishes & prayers that side effects reduce enough for us to enjoy at least some of the festivities.
Happy Christmas to all the amazing women who make up this super support group.
Big hugs
Karen xxxx
HI everyone
I’m not enjoying this at all - the side effects from T are much harder to live with aren’t they? The mouth makes everything taste rank!! I tried a bacon sarnie this morning and it smelt great but tasted bleuggh! I still ate it because you need to eat anyway but I’m sure cardboard would have tasted similar. lol!!
The fatigue is workable - do something then take a break for 10…20 mins… I’m sure you know the drill lol!
But throughout all the chemos I have always got up, showered, dressed etc even if all I do is sit around - the thought of wallowing in bed has no appeal at all unless I’m sound asleep. I realise others do need to take to their bed and whatever works for everyone is the maxim you must be guided by.
The tax trot introduce itself yesterday which was an all day thing of working through the whole cycle from constipation to run…!! But today much more settled and if it’s possible I do feel slightly better - had the odd snooze but it’s interesting to see how we are all affected by the side effects - some side effects affect us quite substantially. We can breeze our way through some but are floored by others but we can all understand where we are coming from.
Chin up folks - this is doable!!
Swampy
Hi everyone and sorry to hear so many of you are still suffering so close to Christmas. I am sending hugs to anyone who is still suffering from their last infusion or has to have chemo close to Christmas, and hoping that for once the SEs will take a break so that you can too.
It’s the same for quite a few of us September Starters as well, and being further ahead, the cumulative effects are starting to bite (thread’s gone a bit quiet again, I hope because they’re all off enjoying themselves rather than because they are floored by the SEs…). Having had my last infusion a week ago the end of chemo is in sight for me, which helps
It’s been an up and down week for me since my last infusion. Although I started off a bit ‘demob happy,’ it is now Day 8 and the SEs are in full swing, so I am suffering a bit at the moment. The fatigue train, ‘chemo brain,’ sore mouth and tongue, sore/ swollen throat and dry cough have arrived again on schedule :womantongue:, although the ‘chemo brain’ now seems to have subsided a bit. I’ve now swapped the Paracetamol for Ibuprofen in the hope that it will alleviate the dry, sore and swollen throat, which is now getting quite bad, and I have also started to take the Fluconazole today in the hope that this will keep oral thrush at bay - fingers crossed, it has always worked before.
The familiar T SEs have now been joined by a new one, peripheral neuropathy (pins and needles and numb feeling in fingers and toes), which I didn’t get with my previous two T cycles. It was hard enough doing household chores wearing rubber gloves, and with numb fingers it’s now even worse! This is what I was dreading, because with neuropathy you just have to hope it goes away eventually, as there’s nothing they can give you for it. Fortunately, I think it is getting a bit better now.
My taste also seems to be affected more than on the last two cycles. I am hoping that things will improve by the end of the week, as they have done on each previous cycle, so that whatever Christmas lunch we have tastes better than cardboard. I won’t be pleased if I can’t taste or don’t fancy the Christmas pudding and cake I made in October and my husband gets to eat it all! The trouble with chemo is that the SEs are unpredictable - and if there’s one thing I’ve learned from my own experience, it is that no two cycles are exactly the same.
On the positive side, I have not had any severe joint pain (yet) during any of my chemo cycles (nothing the Paracetamol could not control), the hot flushes and red face caused by the steroids appear to have subsided now, and the ‘Tax Trots’ don’t seem to be as bad (but give them time…). I also received some very good news yesterday, when I went to see the oncologist to review the MRI scan results and the next stages of my treatment plan. He showed us the latest MRI scans on the screen, and the tumour - clearly visible on the previous scans taken in August - is nowhere to be seen! This is probably the best Christmas present I could have had. We will be seeing the surgeon on Friday morning to fix the date of the operation, which we now know will almost certainly be a lumpectomy. Herceptin injections will begin on 9 January, followed by the operation, and I will next see the oncologist on 13 February to sort out the arrangements for radiotherapy and hormone therapy
So I have a lot to be grateful for in spite of the sore throat, as things could be a lot worse, and I know from your posts that they are for some of you at the moment.
Angywyd - your list of SEs sounds truly awful, and I do hope things improve soon. Can’t quite believe your oncologist’s ‘sense of humour,’ obviously he’s never had to put up with the SEs of chemotherapy himself… The hot flushes and red face should soon pass, mine have now largely subsided, but be careful what cleansers and creams you use, as you may find like me that your skin goes all hypersensitive temporarily (it does eventually pass). Your sore mouth and throat has obviously come out in sympathy with mine, but with any luck - and preventative measures - by Christmas it will be a bad memory. I do strongly recommend getting a course of Fluconazole tablets from your GP this week though before it’s too late, to make sure it doesn’t develop into oral thrush. Re: sore and peeling feet, I suggest you also check this out with your GP or BCN, because it could be the start of ‘palmar-plantar’ (hand-foot) syndrome, which is a listed SE of T (see: cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/docetaxel and cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/side-effects/your-skin-nails-and-cancer-drugs#plantar).. My) My feet started peeling during the first T cycle, but it wasn’t too bad, and they have now improved. I don’t know how much that was due to luck, or preventative measures. I’ve been applying various foot balms (whatever I could get basically!) twice a day since my FEC cycles. I am currently applying CCS Swedish Formula foot cream (costs about £6.00, says it is suitable for diabetics, I got it from my local Lloyds chemists). It is the best foot cream I’ve tried so far - my feet have definitely improved after a couple of weeks of applying it. It smells faintly medical which may be a bit offputting, but it really does help soften the skin on your feet. Re: nail and hand care, I can recommend Onicolife Drops (specialist product for damaged nails, including nails damaged by chemo and rads, unfortunately not cheap, around £15.00, and only available from Live Better With and you probably won’t get them by Christmas now), otherwise, any oil or oil based cream that you can apply to your hands and nails should help minimise drying out and damage - try Dr Organic Tea Tree anti-fungal nail solution (cost around £5.00, paraben and pthalate free, and available from Holland & Barrett) and either Body Shop Almond Oil Hand Cream (good but costs around £10.00, though I got it half-price on special offer, also not paraben/ phthalate free) or Palmers Coconut Oil hand cream (very good budget option, costs around £3.00, is paraben/ pthalate free and and available from most large supermarkets).
Fairycake2 - hope you have managed to order the essentials online in time, but please don’t worry about the presents and cards, this is not really what Christmas is about! I’m sure your family and friends will understand why you can’t do it this time, and would rather have you happy and not feeling stressed about it.
Gracie - sorry to hear you are having to battle an infection as well on top of the chemo. Glad your oncologist has had the sense to postpone your T because of this, as it will give you chance to recover and prepare for it, and you will also have some ‘good days’ at Christmas with your family after all.
Livvy - hope you’re OK.
Kaz58 - I know exactly how you feel, I also felt like that immediately after my first T infusion. For three days, apart from the hot flushes, everything seemed fine, no nausea (yay!), go out for the day and eat a big piece of chocolate cake at teatime - then…wham! Hope the pains and fatigue subside by Christmas, and at least you know you are being looked after.
missmc - hope your nausea, taste changes and ‘loose tummy’ improve soon, and that your first T isn’t as bad as you fear - at least you know what to expect and can prepare.
Sel84 - sorry to hear you are having your first H and T infusions this week so close to Christmas, and yes, unfortunately you do have to stay in the hospital for ages while they give you the first infusions, because you have to be monitored for possible allergic reactions. It is just a precaution, as they are rare, but it is a nuisance all the same. You’ll also have seen that the SEs can be rotten and that they usually kick in a few days after the infusion, so the timing couldn’t be worse. There’s not a lot you can do about some of the SEs, but there are things you can do to minimise the skin and nail changes, such as make sure you apply moisturisers and hand and foot cream twice a day, and apply some suitable oil/ cream to your nails (see advice to Angywyd above). There are also things you can do to minimise the risk of mouth infections and relieve the dry/ sore mouth and joint pains you are likely to get (see my previous post of 12/12/16 below, which I have today updated). I hope they have given you an emergency helpline number to contact over the holiday period - otherwise you will be relying on BCC helpline, NHS 111 and A&E to pick up the pieces if things go wrong. And make sure they give you suitable anti-sickness medication, stronger pain relief incase the Paracetamol isn’t enough, plus medication for sore mouth and throat/ to prevent oral thrush before you leave the hospital. Otherwise, all I can offer is sympathy, and hope that things will not be too bad.
Sus12 - hope the nausea is better now and that you have not been plagued with too many other SEs.
Swampy1901 - sorry to hear the taste changes and ‘Tax Trots’ have arrived, but you may find things improve over the course of the cycle, so let’s hope that by Christmas the worst is over. There’s not much you can do about the taste changes, other than eat whatever you fancy, but there’s still time to get some Immodium and Andrex sensitive bottom wipes for the other thing if you haven’t already! Also watch out for the dry/ sore mouth which may arrive later, though I hope you escape.
Truey - one down, two to go, but you will get there. Glad you are coping with the SEs from your first T thus far, except for the fatigue, which I’m afraid gets us all, the back pain, and the awful taste changes. The taste changes seem to have been cumulative for me, and have got worse since my last T infusion. This is not a SE you want this time of year, when everyone else is stuffing their faces with traditional Christmas fare, but all you can do is eat and drink what suits you. The only thing I’ve found that helps with the fatigue (and this confirms the standard advice and what other September Starters have said) is to make the effort to do some gentle exercise when you feel up to it, without overdoing things. For example, do some light housework or excercises at home, or get out and have a short walk whenever you can, even if it is only down the road and back. It’s a bit of a struggle at first, but I find that once I get going, I feel a lot better.
In my experience Days 3 - 11 of the T cycle are probably the worst, and things have generally got better after that, so hopefully for those of us who have got some bad SEs now, there’s still time for things to improve by Christmas. If I don’t get chance to post on this thread again before the holiday is upon us, I wish you all a merry (and SE free or at least SE-lite) Christmas. XXX
Hi everyone
Haven’t been on for a few days I didn’t want to moan about my troubles when most of us seem to be going through the same Side effects of the T! I for one was not prepared for the bone pain it totally floored me all I can describe it as is someone hitting my bones with a chisel & hammer! From the hips down and random shooting pains elsewhere my oncologist advised me to take paracetamol the cheek!? thank god I had co-codamol which helped a little bit,ive also got very sore finger tips which feel like they’ve been slammed in the door.? I had the trots yesterday too which wasn’t pleasant.my mouth is very sore and my taste buds are zilch! And last but not least ive got thrush both in my mouth & downstairs and I’m on tablets for that too, oh the joys of T! The upside is I feel so much better today lets hope it continues in readiness for Christmas ?. Good luck everyone and I hope your all feeling better really soon and have a wonderful Christmas and we all get a break from the side effects even for just that one day. Big hugs.Xxx
HI All
I am due to have my first T tomorrow morning and have been reading all your posts, I am trying to prepare myself for any SE but it is quite scary, have got painkillers from my Oncologist and have stocked up on Paracetamol so will start with those as soon as I get back from the hospital, have woken up this morning with a pain in my ear and swollen glands so will be trying to get a doctors appointment to see what is going on.
On a positive note my son arrives today and will be staying for two weeks so lots of embarrasing mum cuddles and kisses for him, Christmas dinner this year is Lamb Stew which is already in the freezer so no big meal to prepare on the day so whatever SE i’m having we will still eat (hopefully taste it as well).
Will update how it’s going, wishing you all a Merry Christmas
Mary xx
morning ladies,
Just wanted to say good luck at the doctors and with the 1st T Mary. I do hope it goes smoothly. Though if it’s delayed, you may have an easier Christmas - every cloud…
Old Dawn: BRILLIANT news about your MRI results. I am so pleased for you. As you say, that has to be the best Christmas present ever. much love.
I have rather randomly woken up feeling rubbish & tearful this morning. Not sure why particularly. Side effects aren’t bad today. Both my daughters have their period so perhaps I’m just hormonal…despite now being ‘post menopausal’ at 51. ?
Love to all
Karen
Good luck Mary, hope today goes as well as it can.
Old Dawn, thanks for all the advice, sorry to hear you have been suffering but that is great news about the MRI.
I had my blood test yesterday, they found my vein fine so that was a relief. I was given the low down on the T from my oncologist, she didn’t fill me with much reassurance but did say that everyone is different.
It’s like beginning chemo again, not knowing what to expect. I do now have to have the daily injections which my mum will do for me, as I can’t even look at needles, so that will be a nice Christmas present.
I start herceptin tomorrow which will be by cannula apparently my hospital prefer to do it that way at the moment due to the amount of data they have with giving it by injection. I can opt for having an injection which I might need to do as I don’t think I can face a year of infusions every 3 weeks.
I wish everyone lots of good wishes and hope your side effects ease for Christmas and hope we can all enjoy the day.
Big hugs xx
Good morning everyone,
had my 4th FEC - (4 down, 2 to go), yesterday - went as well as these things go, and as yet am waiting for the se’s to kick in…
have been given extra meds to help with nausea - which for me lingers for the whole 21 days in different degrees! So have been given something to help my stomach lining, as I also burp for England!! And I suppose the stomach and nausea are linked. Didn’t sleep brilliantly last night, so am planning a sofa day in between doing a few necessary jobs
Good luck everyone with coping with your se’s and treatments over the Christmas period - good news that test results are coming in positive.
it’s great having family home too - am loving having my daughter and baby grandson here - but sadly I am also preparing myself for when they return to Oz on NYE, but in the meantime am going to enjoy as many cuddles as I can.
Have a Great Christmas everyone, and sincere wishes for a stress free and se controlled/ free holiday period.
sueBxxx
I get the burps too! Thought it was just me.
As usual it’s great to have this forum to share & check experiences.
Hi all.
Start my first T tomorrow and like you said Sel, it feels a bit like starting chemo for the first time. Am hoping I don’t get too many awful se’s especially with Christmas being so near. I saw a different oncologist thus last time as they only seem to get locums in for a very short period so there’s no continuity which is hard. He was very gung ho about the T but then he’s never been through it! My docs could only fit me in at 2.30 yesterday afternoon for my pre chemo bloods and so no results this am when I phoned the chemo unit. I know it’s better to take the steroids earlier in the day rather than later or it affects your sleep but the unit said they can do them again now and get the results straight back so I’m off to the hospital…again! :(. There’s no way I want to be awake half the night as well as starting the T tomorrow!
Bit fed up but at least I’ll have one T over tomorrow. Just dreading what effect it will have on me :(. However I’m determined to have a nice Christmas and just enjoy having my daughters and the grandkids here :).
Hugs to all, especially those starting or having treatment this week. It’s so tough but we’re getting through it all.
Sue F xx
Maryminder and Sus12 - what rubbish timing for your first T infusion like Sel84, I am so sorry you have to go through this as well. I am surprised some hospitals think it is a good idea to give patients their first infusion of a new chemo drug so close to Christmas, with all the risks that entails if things go wrong. I can’t see what difference it would make in the grand scheme if it was postponed until January. They will have to anyway if your bloods aren’t right. Sending hugs, and hope that as well as briefing, you are all given emergency helpline numbers and a bag full of medication to help you deal with the most likely SEs, and most of all, that your SEs are bearable and you manage to enjoy your Christmas in spite of them.
Thanks to all of you for your supportive posts, and sorry for the marathon post the other day - it must be a record! A Merry Christmas to one and all (though you are probably feeling more like ‘bah, humbug’ at times, I know I am!) ??
Thanks OldDawn. Yes not brilliant timing at all and the chemo unit is closed over Christmas so if there are any problems it’s an hours journey to the main hospital! . I’ve got a long list of stuff to ask them for and I have an out of hours number for the main Hospital which is one of the the Cancer wards basically but they are good. Hoping I don’t suffer too much but I already have plenty of pain killers stuff including morphine as I do seen to suffer with the severe back spasm pains Anyway we went out for a Christmas meal tonight just the two of us and had a lovely evening and it was all very Christmassy so I won’t feel I’ve missed out too much on the food front if I dont feel like eating much. It was nice to get out and feel vaguely normal! :D. Didn’t have any wine though with having the chemo tomorrow I’ll save that for a very small glass of something maybe on Christmas Day :). It will be lovely to have my two daughters here and then hubby’s daughter, hubby and the Grandkids. I’ve got in loads to keep the little ones occupied in case I’m not up to a lot. Hubby is good at cooking so the goose is his job this year with help from the girls. I’m having a year off! :D. We’ve booked the panto for the 28th for all of us…not sure if I’ll manage that but they will all live it and I’ll keep my fingers crossed I can go :).
Trying not to worry about the T tomorrow…what will be will be and it might not be as bad as I’m fearing! Here’s hoping… Thinking of you both Maryminder and Sel84, lots of love and hugs and to everyone on here. Hope you all have as good a Christmas as you can and get to enjoy it as much as possible.
SueF xx
Thanks OldDawn, I did ask about moving the appointment to next week but because of the bank holidays there were no spare spaces, so like Sus12 I will be asking questions today and have my meds all prepared, hopefully things won’t be to bad.
I recieved an appointment for the end of Feb yesterday re a consultation for Radiotherapy, strangly it made me feel a little more positive a sign that things are moving forward and all of this will end eventually :smileyhappy:
Hubby and I went to the Theatre last night to see Sunny Afternoon, and like you Sus12 was nice to do something normal, absolutely shattered by the time we got home but so worth it.
Merry Christmas and Best Wishes for a Better New Year to you all
Mary xx