FEC-T 4/6 Day 11 WOW for the first time in 6 days I can get from one room to another wihout feeling completely exhausted!! What a difference a day makes, yesterday I felt as if I would never feel any better & today I feel, dare I say it…almost normal!
I had an allergic reaction to T - quite scary with lots of nurses & docs swarming round & swift administration of piriton & cortisone, & it ended up taking 6 hours to administer the T - maybe this is why I’ve felt so low over the last few days & SE lasted so long?
Zuzy - my sense of taste has sadly gone too even really strong flavours just taste bland now, think I might have to come up with some inventive recipes - any suggestions?
Good luck to everyone, stay well & stay strong, Trish xxx
Yes, Herceptin is for the 20% of us who are Her2+. Until a few years ago it was only used for recurrences, but they find they can pre-empt.
But here is today’s “share”. Not show and tell, even I’m not up for that! When I went for my frying this morning I asked what I could do for a very sore, pink, swollen nipple. When I saw the onc yesterday during the Herceptin frolics she said ask them for hydrocortisone cream when you go in the morning. I didn’t like to say ‘please give me HC cream’ so I politely asked what I could do. Now bear in mind this is the Christie; biggest dedicated cancer hospital in Europe, forefront of research etc etc.
‘What you need is a fresh cabbage leaf’ the maternal frying lady said. ‘Just like when you’re breast-feeding. Keep them in the fridge for more effect.’ WHAT??? Seriously? The Christie?? I didn’t then like to say ‘your boss said you’d give me HC’, so I rather wimpily said ‘what about HC cream?’. But cabbage leaves it remained.
So I bought a small tube of HC on the way home, figuring it’s always useful in the house, and went down the garden and picked a small, tender cabbage leaf. There and then, in the veg patch, I solemnly tucked it it. (We don’t have close neighbours!) Feels quite nice and cool.
Then, sitting on this hot day, I start to wonder what the rural smell is. Dawns on me it’s me. Hmmm, decisions…
Jane x
Having my port flushed for the first time tmoz, Does it hurt?
Sarah - the only bit that hurts is when they push the huber needle in but this is momentary anf nothing compared to the cannula insertion and is probably worse in the early days because you are sore and tender anyway. Once they are in you don’t feel anything. Why are you having it flushed so early? It only needs to be done monthly.
Trish, unfortunately no inventive suggestions for food, I’m eating mainly salad, the crunch seems to be a bit if a taste substitute, and pasta and cheese, I think because it’s quite plain so don’t have expectations that it will have much taste to start with and the pasta is v comforting, am avoiding anything I really like, had pizza on sat night and it was like cardboard, soooo disappointing! avoiding more spicy stuff at the moment as stomach is a bit delicate but my oh has promised me roast pork with crackling and apple sauce and a curry at the weekend, he thinks they’ll do the job, I will let you know!!
Hope it went ok for everyone at the bar today xx
Trish they have been swopping Curry recipes on June Jewells I think…glad to hear you have survived the T reaction! I’m also glad in a way I’m having a little holiday before I start T. Then I will have quite a bath in steroids. I have some CDs saved up to listen to when I’m recovering as it is often the only way I can find to relax when I am jumpy with steroids but also really tired.
Lexi I think FEC’s efFECts must be cumulative. If I felt twice as bad on FEC 3 as FEC 2 no wonder you are feeling so naff!
Now I know I’m neutropenic I feel somehow better though not really peppier.
I am well and truly fecked (4/6 FEC) home now and a bit tired and wobbly. The little blue pill wiped me out and I had to lie on a bed to be fecked this time. As always the nurse was fabulous.
Hope every one else is ok. xx
Gosh Ann there’s no room for a bed at Cheltenham! You done good!
Teresa I am reminded that they don’t do T on the Chemo Van for the same reason- shock.
Jane I will look forward to updates on this high tech treatment you have stumbled upon.
Hello ladies sorry so many of you are suffering with side effects. I do feel it is cumulative.
fec T 5/6 day 1
my secomd t at the bar, went pear shaped. Had a reaction and suddenly I was clutching my chest, retching and dizzy. Fell forward off the chair. Woke up with an oxygen mask clamped to my face and medical staff administering ( I later found out) hydrocortisone injection and piriton and a bag of stuff through drip. The chemo was suspended for about an hour until onc gave the go ahead to resume which they did but so slowly it was painfully slow. Was in there for hours! Thank goodness I have a friend with me as my head was all over the place and she was a superstar. She is a school nurse but even she admitted later on that it was scary! It turns out my blood pressure dropped to the floor within ten minutes of the start of the cocktail. It stayed low and in fact got worse but then improved after an hour or so.
but anyway. Now I only have one left til car park and next time I will have the cortisone and piriton first and my blood pressure will be monitored more closely.
The good thing was my veins were so prominent when I got there today that I didn’t need a heat pack and the cannula went in like a dream.
have eaten and had a sleep since got home.
thanks for all the informative posts ladies. So interesting.
hope my fellow monoise at the bar today have a good night.
i am truly blessed to have you all in my life x
question please.
Had FEC 4/6 today and for the first time I have a hard round bruise where the cannula went in, not painful, about the size of a 50 pence. It is on the inside of my forearm. Any thoughts ?
Rachel- sounds scary- look after yourself- and all you other Moonies suffering SE’s. I have all fingers crossed to get my dose tomorrow.
Cabbage leaves? Horned oncologists? I have visions of having my chemo given by a nurse with big ears and blue Peter Rabbit trousers… chemo dreams again.
Sleep well all.
Rachel - sounds like you had the same kind of reaction as me so I know how scary it is! Rember to keep up with the fluids & keep an eye on your temp. The Piriton knocked me out & I had a great sleep the first night despite the steroids & sleep during the day, hope you do too xx
Penny - thanks for the tip about June Jewells I’ll have to check it out.
Zuzy - I’m with you on the salads at the moment but the roast pork & curry sound good, wierd feeling hungry but not knowing what to eat as it all tastes the same.
March 13 - I had bruising like this when I was on FEC - apparently it’s the red drug that causes damage to the vein & it also caused ‘cording’ right along my vein up to my elbow which meant straightening my arm was difficult & sore. I hope it doesn’t get this far for you but if you feel your arm start to tighten up a bit like an elastic band is stopping you from extending your arm then apply a warm compress & gentle massage, it does ease eventually. My chemo nurse did get me to get it checked out by my gp first though to make sure there was no sign of infection so it may be worth just giving yours a call if you’re worried.
Hope everyone has a peaceful night xxxxx
Ann, my oncology nurse said to use comfrey oil to massage sore and tight veins. (We like old folk remedies here in the north west!) Apparently it really helps to massage and stretch the whole arm.
Cabbage leaves do work, too, on sore irradiated nipples.
Rachel, that sounds really scary. I hope you can treat yourself very kindly this weekend?
I do think all this stuff they give is cumulative, but the good news is that we are all in it together. I read something about someone who’d been some support system (for drugs or alcohol I think), and they were given a sort of mantra “I can’t but we can”. And this group is definitely WE!! And yes we can get through. I know I was one of the early ones, starting on May 1st, so I’m nearer the end of the tunnel than some of you, but we’re all in this together until every single one of us is safely in the car park. We aint leaving anyone behind!!
Hugs - but not very close ones. It’s WAAAYYY too hot!!
Jane xx
OMG Rachel that sounds really scary. I was actually given cortizone before my second tax because of what happened during the first cycle so perhaps that saved me from a similar situation. Please take care of yourself. xx
Re cording, my veins on left arm have been tender and dark since cycle 2 despite not being used for numbers 4 and 5 - they are not terribly painful but hurts to straighten. Should it take this long to resolve?
Re injections - I have had lower back and leg pain yesterday meaning they have already worked but still have 2 injections to go - should I really have the last 2 injections do you think? Concerned I might over do it.
Nice to see it will be cooler today - yesterday was oppressive.
If all stays well throughout today will book my cottage in the New Forest and go on Sunday - yeah!
Jane - What a lovely post. We really are all in this together - right to the car park for all and beyond…
Dodo, I wouldn’t risk it at this stage, the last thing you want is a problem just before the end and when I asked about reducing the numbe I had was firmly yttold no (that being said I’m thinking about missing my last one next time so I can go to my parents at the bank hol without oh!) xx
Yes such great posts! We are certainly all in this together despite different treatments etc.
good luck to Tereasa at the bar and Penny i think? I have chemo mushy brain today! Had some sleep but not enough so planning annhours nap before lunch and last steroids. Then injections start this afternoon , I always find the first injection the worst. But usually manage. Haha
dodo I so hope you get away as a chof scan scene will be good for the soul.
ann I hope you slept after your visit to the bar.
fec t 5/6 day 2
only one left before I enter the car park and then a nice rest before radiotherapy. Am still visualising going back to wOrk in January part I time till after Easter. Then full time. I like to have a plan!
have a good day all
xx
FEC-T - 4/6 Day 5
Morning Moonies - wow you have been making me chuckle with you talk of horns and cabbage leafs - I remember walking around with cabbage leafs stuffed down my bra in the first few weeks after having both my daughters - I seem to remember Savoy being of particular comfort especially fresh from the fridge.
Rachel - gosh the reaction sounds scary - strange how it happened on the 2nd and not the first - clearly your body having a little tantrum about what its gone through, glad that they dealt with it so quickly and efficiently - one more to go - how exciting!! So sorry about everything that has been happening at home and really hope that things are resolved soon and not too awful.
Nice to hear from some of the moonies who have been missing for a while - whe’re all getting there ladies, stay strong.
Jane I love your posts and words of wisdom and echo what you say about the group - I couldn’t have done it without you lovely ladies you are a constant source of strength, bonds for life.
Penny - damn and balst that you have been delayed again - how frustrating but glad it meant you got to the funeral and get a bit more rest time before the next trip to the bar.
Not sure how I feel about TAX yet - loved the fact that the SE’s didn’t kick in for a couple of days but missing my tastebuds already and hating the body/bone aches although I think the hot weather is not helping this - why is every trip to the bar accompanied by a heatwave?? Have discovered sitting in front of a fan and spraying myself down with a little water is fantastic relief. Certainly not missing the 8 days of nausea but finding the exhaustion tough to handle. Swings and roundabouts I think but certainly emotionally I feel better on this (although the weekend may change that!).
Food - marmite and more marmite for me, going to have a spicy chinese tonight and curry tomorrow - anything to break through the blandness. Hope my stomach can handle it. Still tasting salt so thankfully unlike Suzy I’m back on the Hula Hoops!! Water is very dull though - drink suggestions??
Injections - Dodo I would definitely keep going with them - can’t do you any harm only good I think despite the back pain - I was so worried about doing them myself but actually its been fine - another thing learnt on this journey I felt so proud of myself when I did my own I think the nurse thought I was mad when I whooped in the surgery!
Veins/Cording - Ann if it gets any worse I’d get it checked out incase its an infection but basically its one of the more horrible SE’s from ‘the red stuff’ my veins have suffered terriblly rock hard on the top of my hand and underneath of forearm, with dark black lines, they are inventing new and interesting places to put the cannular every time I go in. Thankfully they are less painful this week so hoping in time they will heal but have been told it can take a long time - 6 months to a year. I have the most increadible purple blue black bruise from my last dose looks like a Rothko.
Well here’s to all of us having a fabulous weekend - Karen big hugs especially going out to you at the moment but also to all of you wonderful moonbeams, shine on.
Aly xx
Drinks; tonic water, real fiery ginger beer (bit burp-making), and any of the tall green ‘Bottle Green’ syrups for dilution - elderflower or root ginger and lemon root are the 2 faves in this house. Make it very dilute though - they say 1 in 10.
Cheers!
Jane x
Hi all
Hope all well and particularly those who have had scary/wobbly episodes.
I was able to have my chemo this morning- FEC 5/6 so able to shout ‘one more to go!’. My Onc has prescribed the injections for the last two cycles- filigrastin I think it’s called- I know many of you are old hands at this- any tips would be much appreciated as I intend to do the injections myself but am quite wary.
Otherwise feeling tired and rather low again so need to get through the next few days of FEC nausea then the injections and then sail on into the FINAL dose!
How often do you see your Onc? I missed my last appointment through being in hospital but today they couldn’t find another appt till after chemo would be finished because the docs are all off on leave and the others are booked up. I’m not sure if it matters but feel a bit adrift- radiotherapy appt should come through automatically they said…
Jane and Aly- really appreciate the positive posts. It is really SO comforting to come to this thread and know that you all understand - we are all helping each other so much.