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**Tamoxigang counting down to Easter eggs- thread 48**

998 replies

BetsyBoop · 21/03/2014 20:05

throws some hot cross buns on the trolley

OP posts:
Wren48 · 05/05/2014 16:20

Great that you managed the injection, speedy. Sorry you're feeling so rough, and hope that it eases soon.

magicmango · 05/05/2014 16:31

Sorry to hear you're having a bad day speedy , I hope tomorrow turns out to be a better day for you.

malteserzz · 05/05/2014 16:54

Sorry to hear that speedy, lots of rest and trashy tv or whatever passes the time till you feel better x

yotty · 05/05/2014 17:07

Sorry you're having a bad day Speedy. Hang on in there and the 'fog' will soon lift and you will feel loads better.
Can anyone tell me about how things change when you move from FEC to T? I'm trying to sort out a school visit with my son and I'm trying to work out if I can go with him or not. When do you start taking the drugs to alleviate the side effects, is it the day before they start the treatment? I'll also be having a subcutaneous injection of herceptin as well. When do the side effects kick in and will I feel just as crap as I do the first few days with FEC?

mildmay · 05/05/2014 18:57

Hi speedy thinking about you.im day ten from second fec and still struggling.Seem to have developed a cough .Always helps to hear how you are all doing though.Already worrying about number three and like yotty worring about the sideeffects of t.

reallyreallyworried · 05/05/2014 19:01

Just waiting for my train back Sad i don't want to go back Sad I don't want anymore of the sodding radiotherapy! Can't face anymore of there stupid cock ups! I'm sore and fed up! I've just had enough Sad

Sorry for moaning AGAIN I feel its all I do on here! I know i should be grateful for all the hospital do, but it just seems neverending!!!!

Mummywheel · 05/05/2014 19:07

Speedy hope you pick up soon, it generally takes me a week before I start to feel normal again.

yotty I will also be having herceptin injection. Did you have an ECG before hand? My Onc and Chemo nurse have given me conflicting information as to whether I will have it with my 5th FEC Confused

felinesad · 05/05/2014 19:14

Speedy I'm sure you will feel better soon. This is the 1st day out of my 'black cloud' after 3rd FEC last Monday. I have been really down and weepy again. It's just so hard isn't it?

Also like mildmay and yotty worrying about my 1st 'T' on the 19th :(

Updatingmywill · 05/05/2014 19:57

I had my first T on 22 April, so nearly 2 weeks ago now. I thought I'd report on my side effects for the people worrying about it.

The first couple of days, I felt completely normal although I lost my taste buds pretty quickly. By day 4, my tongue was swollen and furry and tasted horrible. It took a few days for this to calm down. (Judging by the doctor's reaction, "Bizarre - come look at this!" directed to the other doctors in earshot, it was unusually bad!!)

The muscle aches and pains arrived after I stopped taking the steroids, but they were quite mild - no worse than the day after a heavy gym session. I had mild stomach cramps on days 5 and 6, followed by mild diarrhea on days 7 - 9. I was quite tired though and have napped most days. I was feeling back to 'normal' (i.e. tired but functional Grin) by day 10.

All in all, it wasn't as bad as I was expecting. I did not enjoy wearing the cold mitts whilst the drug was being delivered, but I do suffer quite badly anyway from cold hands / feet. I was given a silicon nail varnish and have been putting that on every other day. So far, so good. I can see a white ring appearing on my nails and they were a bit tender, but otherwise okay.

It's doable! Not pleasant for sure, but definitely doable. I'm still working full-time but planning to take days 7-8 and possibly 9 off sick next time round.

Personally I'm dreading the radiotherapy; I get quite ratty about delays and people messing up so I am sympathising with really and hoping things get better.

yotty · 05/05/2014 20:14

Updating, thank you that's really helpful info. Were you given any drugs to take the day before your treatment?

mildmay · 05/05/2014 20:40

Yes thanks Updating thats great to hear its doable.

malteserzz · 05/05/2014 21:00

I agree with updating it's definitely doable and the worst thing is the horrid taste, I didn't get the bone aches just felt generally grotty and run down. Just had steroids to take the day before chemo for 3 days, they make you feel a bit odd too and can keep you awake

Really I'm not surprised you feel like that bless you, not long to go now though, it was Friday wasn't it but guess you will have to have an extra one as they didn't zap you on Friday ? Still the end is in sight !

Updatingmywill · 05/05/2014 22:17

Hi yotty, I was given Medrol (a steroid) to take the evening before, the morning and evening of chemo and 2 mornings after. I got the same drug as an anti-emetic for FEC but it is also an anti-allergy medication and reduces the joint / muscle pain. I agree about it disturbing your sleep tho - I wake up at 4 every morning I take it!

foofooyeah · 06/05/2014 02:24

I had my first T on Friday ..... And I'm wide awake. Have generally felt ok apart from sore feet. Otherwise have been fine but its early days.

felinesad · 06/05/2014 06:56

Thanks Updating. Very helpful. Just got used to the side effects of FEC which as you say in my case have been doable if not particularly pleasant. I have steroids to take before the treatment starts and they do keep me awake. Waking up at 1.30 and not getting back to sleep has been a real highlight of all this!!

reallyreallyworried · 06/05/2014 06:59

Thanks malt I know the end is in sight (in theory) last one should be on Monday! But right now I have just lost all trust in them! I can't really explain it, I just don't feel I want to go back there! We're not just talking about a lack of communication, it's like they don't know what they are doing! Surely I'm not the first patient to have this ABC machine!!

Anyway working till half 1 so hopefully by then I will talk myself into going Sad

Hope all those suffering side effects manage a quiet day on the sofa! Xx

malteserzz · 06/05/2014 09:47

I understand completely really, they have messed you around so much it's not surprising you feel like that. Think how far you have come though, you can do this last bit x

reallyreallyworried · 06/05/2014 10:01

Thanks malt I know I have to go, for my own sake. The only person I am going to hurt, if I don't go is me Sad I'm just feeling so emotional today! I know this will sound ridiculously pathetic, but I am genuinely scared! I've talked myself into the fact that they don't know what they are doing and they are going to mess up! Then another little voice tells me to stop being so stupid, they are nice ladies and they will see that I am okay! But I think them being nice, has made this a bit more difficult. They kind of laugh their way through their/others cock ups! BUT I'm not really seeing a funny side now Sad I am tired and sore! I just want a few weeks, months or years hospital free!

Anyway enough of my moaning. Hope everyone has a good day! Xx

BishB · 06/05/2014 10:19

speedy hope things pick up soon.
reallyreally roll on next Monday!

My chemo cycles are every two weeks and this second week has been better in terms of energy levels, which is great. I also had my first proper shower in two weeks today due to the skin around my portacath being healed. It made me feel very normal and fresh!

But I still have this constant, sore pain in the bum due to my tumour. I'm hoping as chemo progresses and (hopefully) the tumour shrinks the pain will diminish too. It makes sitting/driving/sleeping uncomfortable and completely saps my energy.

MomOfTwoGirls2 · 06/05/2014 10:29

I found it really hard to sleep while doing Tax. Onc prescribed sleeping tablets which I needed for week 1 and week 2. I could sleep fine once I finished Tax.

Wren48 · 06/05/2014 14:17

Hi to all, and hugs to all having a rotten time. I'm in less of a rotten place this week and feel better on tax 2 than I did on tax 1 (but getting a cold now so it can all change...). yotty, I've found tax much more bearable than FEC, but more unpredictable and with less of a clear cut good period at the end. Side effects only kick in for me after day 4. Aches and pains are manageable for me with painkillers, but I've had a long list of smaller side effects - rashes/ oral thrush/ painful fingertips/ fatigue. Etc etc. Nothing awful, but definitely debilitating. But better than the dreaded FEC nausea....

RahRahRasputin · 06/05/2014 14:30

BishB are you taking anything for the pain? I was in a lot of pain after my surgery and found that sitting on one of those ring cushions, for piles, helped a little. It reduces the pressure on your bottom. As the pain improved I switched to a more subtle cushion, it's square and just has a little gap at the back. Now I have nerve pain in my bottom, but the cushions don't really make a difference to that. Anyway, a cushion might be worth a try if the pain continues? I hope the chemo shrinks the tumour quickly so that you're not in pain.

Waving to everyone else Flowers

greeneyedcat · 06/05/2014 14:59

This reply has been deleted

Message withdrawn at poster's request.

Speedypenguin · 06/05/2014 17:03

Thanks for all the lovely messages. I just can't seem to pull out of the fog but know I will get there. Have a wonderful sore throat and it feels like something had died in there- yuck!
Has anybody else had trouble with sore veins/arm on the side it all goes in? My arm was tender but is more sore today, especially when I stretch out. Have tried a hot water bottle. Had to speak to a nurse about PICC line anyway and she just said to call back if it gets worse.

Waves pathetically from sofa to everyone.

Must get a grip

mildmay · 06/05/2014 18:18

Hi Speedy sorry to hear your still struggling .hopefully tommorrow you will feel brighter.
Im also worried about state of veins second fec was painful going in and hand is still bruised and sore.nurse says my veins very thin and straggley.
We will all get through this like the others but its hard.
Hope everybody has a restful evening

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