Hi daisyleaf
Im due to start chemo on the 16th September, Petrified, nervous, worried etc etc. Would be happy to be a chemo buddy if your still in need of one! Have you started chemo yet if so what regime are you having.
look forward to hearing from potential chemo buddies. Karen
Hi Karen
would be great to have you join in - we are all in this together! My second chemo is on Sept 16th, so the timing of any SEs we get will probably coincide. I’m having FEC x 6. So far (ie, this cycle) I had nausea and tiredness for a just over week then started to feel a lot better.
what regime are you on? there are a range of regimes on here so you will be able to get info about a few different chemo regimes. Everyone has written that the anticipation is worse than the actual treatment, and that was definitely true for me. If we weren’t frightened of chemo, you have to wonder just what WOULD worry us! it is scary stuff, but honestly, staff pull all the stops out to support you and it is OK at the unit. As for the chemo itself, its do-able - we all have to do it and everyone seems to get through!
take care and keep in touch
love Monica
Hi Monica
Thank you for the reply. I am having 4 Fec then 4 Taxotere. Think I am reading too much because I am scaring myself silly now. I have read about people painting their nails a dark colour to prevent loosing them. Should I do this before I start chemo or just wait and see what happens? I hope you continue to manage ok with the side effects. Take care.
Love Karen xx
Hi Karen - I think it gets like that. I don’t know the answer to the nails thing - I gave up worrying about that one! what I have done is listen to the nurses on the chemo unit and followed their advice.
Do you have an appointment soon with the chemo unit?
monica
Hi Monica
Had appointment today with chemo consultant who I must admit I did not warm to. I was told my first session of chemo was on the 16th sept no mention of me going in beforehand to the chemo unit, BCN said 1st session would take longer as they go through everything with me. I suppose they do things differently in different areas. When were you diagnosed with cancer?
xx
Hi Girls,
I’ve finished 4 FEC and have just had my first (of 4) Taxotere. I was really happy to find you because I think I’m the only person who’s on this regime. Am glad it looks as though you’re getting on well with the FEC. After my 3rd dose, my lump just seemed to disinergrate and shrivel up! It was really encouraging. I had my FEC then just laid in bed for a week. It’s all I could do. I can’t believe I’ve got 5 under my belt and only 3 to go. You’ll be here before you know it too!
Please email me or keep me updated on how you’re doing. Are you both going to have surgery after chemo?
Annie x
Hi there
Karen I was diagnosed in June but with recurrence - first bc was in 1997 (9.9mm grade 1, stage 1 no lymph involvement) had axillary clearance, mastectomy and tamoxifen, then was fine for the 12 intervening years. This time it is 19mm, grade 3, no sign of spread, had WLE in July, having FEC x 6, then radiotherapy, then hormone treatment. Both have been hormone receptive.
Hi Annie, as you see above, I’ve already had my surgery! It is good to have you join us though, you and Karen seem to have the same treatment as far as chemo goes. Yes, the FEC knocks me up for a week (well it did this time, we’ll see in a couple of weeks if thats going to be a pattern, I guess!!
take care
love, Monica
I have been told i will be starting Fec within the next 2 weeks and would love to have a chemo buddy to go through this with. I have lobular cancer which was 60mm grade 1 with clearance and no spread to lymph nodes. Possibly facing further surgery after chemo but lets get through this first
HI girls
Annie I love your picture! I must get one of me to add, although I have to say I’m not looking at my best at present - lank greasy hair due to not being able to wash it every day anymore - yuk.
I’ve already had my surgery - had to have an excision biopsy (i.e. a WLE) to diagnose the lump as all the other biopsies were coming back normal - fortunately the surgeon just didn’t believe it so went in there and got it out to work out what it was - 16mm grade 2 lobular lump. I then had to go back in and have it done again to get clear margins plus a sentinel node biopsy which diagnosed clear nodes, fortunately.
I seem to be doing ok on the FEC, only one so far but it’s not really knocked me out - although I am suffering from indigestion and constipation which I am not used to.
REally struggling with my hickman line though, it hurts (more uncomfortable than agony) constantly - whenever I move my head, cough, clear my throat, eat an apple, go to to the loo, walk up stairs, lie in bed etc. It’s really getting me down - far worse than the SE of the FEC. I don’t think I can cope with this for the next five months - I’m already cracking up and I’ve not even done a week. I don’t know what to do about it though - I’m sure the chemo nurses will just think I’m whining about it but it’s really getting to me.
Karen, I would just wait and see what happens before you start doing things to nails or hair - even though we are all on the same drugs it’s interesting how we all have different side effects - you might not have a problem.
My mouth feels like the bottom of a birdcage this morning - like I need to scrape out the inside with one of those tongue scraper things Anyone else had this problem?
all the best
Helen.
Hi Helen
sounds like you are having a rotten time with that H line - I think its worth a call to the chemo unit to get it checked out, it is worth a shot, and better than putting up with it. I hope they can resolve it - doesn’t sound comfortable at all, the sort of thing I too would find really tough.
hope it goes well, I’m thinking of you.
lots of love
monica xx
Hi Helen,
I agree with Monica, you definately need to seek help about your line. I’ve been fortunate enough to be without one for now. I was chatting to a ladie at Christies last month while waiting for bloods and she said she’s had 3 different types of central lines and now she’s got the one that works for her. She was singing it’s praises. I’m a staff nurse by trade and I’ve seen many patients with long term central lines who have never had any problems what-so-ever. You definately need to seek advice and the sooner the better.
No one will think you’re whining. And if they do, their opinion isn’t worth having. Thats YOUR body and YOUR hickman line and if it’s not right for you then you are not a toture victim and should not suffer. I’m sure there are lots of other things that can be offered to you and you are well within your rights to be insistant that presently it is/isn’t working for you.
I suffered really badly with constipation from FEC followed by diarrohea about a week later. To stop the yoyo bowels I found that if I took movicol and senna for 2 days before my chemo, by chemo day I was well oiled. I was far to sick to take anything after the FEC and this little boost before hand worked for me. Also reflexology is excellent for stimulating your bowel. If you register at your local Mcmillian centre you can get this for free, but if you can afford it it’s £20 well spent!!! I found that when my bowels got sorted, the sickness improved. Though only fractionally. But the best thing for constipation, boringly, really is fluid. Lots of it, which is so difficult when all you want to do is sleep.
I too found indigestion horrific and I was perscribed lansoprozole after cycle 2. That also helped no end with my sickness. Peppermint tea is now also a particular favorite!
Keep in touch and let us all know how you’re getting on.
Annie x x x
Hi Monica/Annie
well I’m off to the hospital this morning to have the dreaded line flushed so I will speak to the nurses about it. To be honest, it has settled down a bit in the last day - I took the dressing off my neck in desperation which made things a bit better and it now does hurt less. I went to the Australia/England cricket yesterday and had a great day and pretty much forgot about it so perhaps I can get my head round it after all. However, it is still causing me some distress - mentally if not physically so I will discuss alternatives with them - I’m just not sure there is anything out there which is an improvement - however you look at it, having tubes inside your veins is not a good thing to be doing, is it?
I’m now feeling fine apart from the indigestion - it woke me up in the night and breakfast was actually painful to eat - I’ve never had indigestion so don’t know what to do about it. And I have a revolting green tongue and the skin is shedding from the inside of my mouth - it’s sore but not agony - not sure if this is thrush or just another SE. The other thrush hasn’t gone and is driving me nuts, but at least I know what I’m dealing with that as I get it quite often anyway.
I think if I didn’t have the line in I could have quite a normal life, really. I am sleeping very well, not fatigued (yet) and generally feel ok apart from the minor(ish)side effects. I wonder if it will get steadily worse with each cycle?
I know what you mean abut the constipation, Annie, it’s so difficult to force down liquids when one is already feeling queasy, no matter how much we know we should do it. Senna tablets sorted that one out - I have a cupboard full following surgery, although I hate the cramps they give me.
I’m having a session of aromatherapy at my local cancer trust next week - they give six sessions free plus I can have reflexology too - it’s amazing the support that is out there for free for us patients. I will certainly be looking to give something back once I’m out the other side of this.
Good luck all, hope your weeks are going well. Monica when is your next session?
hello chaps,
next session is 16th, next week - I can’t believe its only 2 weeks since the first - I’ve gone round the bend and back again! I very naively thought the first week of se’s was ‘it’ but then weird moods started and I had a few overactive days where I couldn’t stop, and then back to tiredness (but that doesn’t really describe the level of fatigue, does it?)
Helen, I hope things get better soon with the H line, would love to hear how you get on today.
Annie, I too love that peppermint tea, I make a pot in the morning and drink it all day (after the pot of coffee to get me going), then I drink camomile all evening. We were brought up on herbal teas - my mum was from germany and they are really drunk a lot over there and used as herbal remedies - we used to have camomile tea but on cuts and stings etc when we were kids!so it is also like comfort food and having my mum back, in a way, for me.
take care
love, Monica xx
H All
been following your thread, and good to see your all doing fine.
Just though id add my pennyworth,I have had a left side mx and ive just had 3fec and 2 tax lasttax next week yipeeeeeeee
if you get a yucky mouth on the chemo you could have oral thrush it can also cause a sore throat, i have suffered with this all the way through but after the 1st one i was perscribed fluconazole to take daily and it does the trick and clears it up brilliantly. if you get indigestion get some omeperozole from your dr’s as its brll too.
all the best to you all this is an awful journey but it is doable.
take care all
Sally xx
Hi LB1966
I got your personal message and am thrilled that we can be chemo buddies - at the moment my computer is blocking me from going to my profile/messages page - trying to sort it out - so I can’t PM you but I am here - try sending me another message.
I have an appointment on Monday to see the Treatment Suite at the Chartwell Centre, Bromley and then will see my ONC on Wed to check I am ok for chemo the following week. Wow this is scary - dreading it!
Lyn x
Hi All
Well yesterday’s hospital visit was ok. Got some omeperozole for the indigestion which so far is working well. Also some nystatin for oral thrush although not sure if I’ve got it or not - I’ve been swabbed everywhere to get it checked out! My mouth is very yukky - ulcers, white painful spots on tongue, very sore to use the Difflam mouth wash. And not such a good sense of taste - I came to the conclusion when I was eating marmite yesterday and couldn’t really taste it that something must be wrong!
I spoke to the nurses about the Hickman line and they said give it another week to see if it settles down further and if not, speak about a PICC line instead. It was quite funny, I was sitting in the waiting room and met a woman I had surgery with, plus another - at least two people within 10 years of my age, whereas last week everyone was about 80! Anyway, I was talking about my Hickman line and the problems and suddenly almost everyone in the room whipped out a Hickman line - it seems more people have them than not. So we all had a good gossip about them - one man even boasting that he had a line with two ports instead of the normal single one! And his wife had made a little neck pouch for it to sit in rather than stuffing it down my bra which is what I do. They mostly had positive things to say so it made me feel a lot better and more relaxed about it. So I’ll keep going with it, it is a lot more comfortable now, although there’s a horrible hard lump in my neck - I wonder what it is but the nurse either couldn’t or wouldn’t say. If it gets better hopefully I’ll stop noticing it so much.
So I celebrated by going to Sainsbury’s and splashing out on some ‘fat’ clothes. I’ve come to the conclusion I’m not going to lose any weight in the next few months (I was doing weightwatchers) and really can’t bear to squash myself into my current clothes. (The bald muffin top look really isn’t too special). So bought some cheap jeans and tops which are comfortable to wear. I’ll have a ceremonial burning of the chemotherapy clothes at the end of it all then it’s back on the diet! So far I’ve not actually put on any weight(I did that on my holiday before it all started!) so if I can at least stay the same that’ll be good.
Hope you’re all going well and enjoying the late summer - lovely day for a walk.
all the best
Helen.
bumping this up
how is everyone doing today?
Hi everyone
hope everyone is doing OK - Helen it sounds like things are getting resolved for you, hope its all going well.
I shaved off what was left of my barnet at the weekend, I found the moulting too depressing and feel better now that its gone.
Couldn’t have second cycle today as neutrophils too low, so have to wait another week! Poo! that moves end date further away and I just want this done and over with!
I think I’ll be in line with more of you re timing of No.2 on 23rd
take care you guys
love, Monica xx
What a bummer, Monica
I have to say that now I’ve started I really don’t want any delays. YOu are now in sync with me - we should finish the week before Christmas if there are no delays. My hair is still holding on, every time I shower or brush it I expect large chunks to fall out, but not yet. Here’s hoping. It must be awful if it just falls out in handfuls. I wonder if I sprayed it with enough hair spray it would glue itself to my scalp!
hope you’re feeling better soon
Helen.
Hi All,
I have been following this forum for some time prior to starting chemo for advice etc which has been very helpful.
I just thought I would share my experiences with you to date. I started the first of x3 FEC 3 days ago on Tuesday 15th, which will be followed by x3 Tax. My biggest fear more than losing my hair was nausea and vomiting (sounds silly but I have a slight phobia about vomiting). So far still feeling a little queasy but no vomiting! The main reason for writing which I hope will help others is that I found on this forum the newish preventer drug (for vomiting) called APREPITANT or EMEND. I am not sure but I think they usually only give it to you if you have had a rough experience first time round. I just told my Onc about my fears and it was given to me without hesitation. Now I don’t really know if it has helped (as I have taken all my other anti-sickness tabs too) but it may well have done. So far so good. Just still feeling a bit washed out and queasy and finding it difficult to find a fluid I like (have never been big on fluid intake). Got the strange taste in my mouth this morning and indigestion. I have been grateful to all your comments on this site. Lynn xx