I believe you are going through the same type of chemo as Belle and myself - FEC all the way - not an easy journey! Number 4 and 5 have been very challenging and I hope you are doing ok.
To be able to pm Belle you would need to enable your private messaging facility. You might find this link of help to set it up -
My friend has just sent the following through to give me some inspiration after I told her about my rapidly diminishing eyebrows: http://justsomething.co/28-hilarious-eyebrow-fails/
I definitely think that tatooing cats over my eyes might be the way to go!
Best wishes to you both in hospital - you're in the best place to get better as soon as you can.
Marije - I'll keep my fingers crossed that you avoid the stomach bug. Might be worth chatting to your chemo nurse just to find out what to do if you do catch it?
Great, the whole family has now come down with a tummy bug! All the kids have played together, so it's only a matter of time... I believe I am now at my 'low point' of immune system, so what would I do if I get the tummy bug?
'Avoidence' is impossible.. We can wash all the hands we want, I am still the main carer of my kids and change nappies, receive kisses..
Well what a shocker T has been. Like you netti37 am begining to feel i must have sailed through FEC (even though had s/e's) . Had first T 4 days ago on thursday, was manic on thursday and friday due to steriods, but by god did the baseball bats come out yesterday! Feel tender and achey from forehead to toes. My double chin feels like its quadrupled as so tender to touch, and throat and mouth very sore. Tongue feels burnt and huge.
Today I feel like a hundred as trying to walk is so painful - am going so slowly! Getting tingling in some fingers and soles of feet - guessing its the neuropathy pain you can get. Even trying to punch out painkillers from packet is difficult as fingernails already tender!! Have tried brufen, paracetamol and co-codamol over the past few days - not one has taken the aching away but guess makes it more bearable.
Sending gentle hugs to all and hope we all feel better soon - at least the sun's shinning
Terriannes90 - I'm on day 12 and starting to notice that every now and then I get sort of a 'hot flush' on my hands and feet. Only maybe once or twice a day. Not itchy though. I wonder if this is because I'm still taking claritin for the aches and pains? Are you taking an antihistimine?
netti37 & Anon16 - I'd definitely phone up about the stomach pain. I would imagine that this is one of the symptoms they could prescribe something to help with, so it's worth a go. My stomach was much more upset by T than FEC. I'd go with a mild laxative though, as I had a sennacot (just one) and then spent a few days swinging from one extreme to another, if you see what I mean!
Marije - I'm sure my eyes aren't as good as they were pre-chemo, but I think for me it's just tiredness as I don't notice problems focussing as much by the end of week 3. I'm going to book an eye test when it's all over though just to be sure.
I just felt my vision has been a bit more blurry in the distance and I can't 'shift' focus as quickly as I used to.
Otherwise the eyes are fine, if only a bit more watery.
I had my eyes lasered a few years back, and I'm a bit unsettled about that change in vision!
Might phone ward tomorrow to check x
If it helps, I was really bad for 2 days then gradually got better. Was worse than fec, but I didn't get any delay before it hit me like some others have.
so if you're following the same pattern as me you're over the worse but have another 4 days or so before you really start to feel better.
Hope that helps x
Popkit and Terriannes,
I'm just having a read through the threads and was debating whether or not to post to ask if anyone has had problems with their feet or hands?
I've had three TC chemo cycles and just before my third one last Friday I developed very red, sore soles of feet with some dry skin. The soles of my feet feel "burnt" and I have lost some sensation in my toes and the balls of my feet. It's quite sore when I walk. I also have some loss of sensation in the my fingertips, a "burning, pins and needles" type of feeling.
I showed the nurses my feet when I got my chemo last week, they gave me Diprobase (which hasn't really helped much, but keeps them hydrated) cream and told me to "keep an eye on them". As this hasn't improved in the last week I phoned my chemo unit helpline yesterday. I was told I may peripheral neuropathy and that it is a side effect of chemo. My fourth and last chemo may not go ahead or be reduced. My next appt is not until the 7th September when I get my bloods done before chemo on the 9th September.
I've been advised to avoid extreme temperatures (although I want to put my feet in iced water!). You might want to let your chemo team know about this.
I'm sorry to hear your mouth is so sore again. Completely sympathise with the barely being able to talk - I had a couple of nasty ulcers in my throat this time around and my hubby kept getting grumpy that I only every replied to him in grunts, but it was so much less painful than opening my mouth!
I've got an ulcer spray to have a go with for the next round, I'll let you know if it's any good. I wonder if there's a limit on the number of mouth treatments you can use at one time?!
If it helps, remember that you've only got to do this twice more and it's all over. And I suspect that the side effects of the last treatment, while physically just as bad, might be easier to manage emotionally.
Take care xxx
Well done for getting your first T!
And happy 1st birthday to your boy Bagpus 🙂
T has well and truly hit me now (day 7). Though funnily enough I braced myself for the bone and muscle aches, and those have been minor. It's the mouth!! My goodness, never thought I could have so much pain in my mouth. It is completely and utterly covered in sores and ulcers and it's like one gaping wound. I always thought I had a high pain threshold, but this is excruciating! Needless to say I was in hospital all day tomorrow, and there's talk about reducing the dose. Sent home with more mouthwashes and morphine! I can barely eat, talk or smile. I so so long forward to a time when my mouth is OK again and I can go OUT for dinner, and enjoy food and a glass of wine. It's amazing when you realise you take life's little pleasures out of things like sense and taste (and good health in general) 🙂
I suppose if that's the lesson we learn from all of this, so be it..
I hope you're all well.
Thanks guys for your good wishes, well number 4 DONE (first T)!!
Well what a different experience that was for me - so much better than having the FEC. I hated the nurses sitting in front of me and injecting those 10 syringefuls into my hand, I didn't want to converse with them, look at them or anything, and never wanted to see then again (was given in a mobile unit, whereas the T is given in the day unit of the hospital).
Having the drip yesterday behind my chair allowed me to go into denial as to what was happening, which suited me great, and found i was happier and chattier to the nurses as they wandered by. I think the delay of one week made me feel i WANTED it , rather than pitching up to have it automatically at 3 weeks, which made me more positive in having it and want to get on with it and not drag the time out.
Face very flushed, and had to have wet fannel on face overnight to calm it down to try and allow me to sleep. The steriods have helped in these past 24 hours in achieving a tidier house, was up till 2.30am sorting rubbish and old clothes and up at 6 and now been cleaning kitchen - every cloud and all that.................!!
Wishing us all a sunny and bright day, and thanks again for all your support, tips and advice, coz that really does make this situation all the more bearable
Despite still recovering from the effects of T, I can safely say that I'm feeling 100% better today than this time last year - as our little boy has just turned 1 today!!
popkit50 - what a lovely day at the beach, brilliant idea!
I'm glad they've got you sorted, how annoying to have a delay though.
I found that the first couple of days on T were hard, though I think a lot of that was due to having hot flushes, which possibly weren't caused by the T (by herceptin or zoladex implant?) but I think that the T did aggravate them. So lots of fluids and be prepared for a couple of rough nights, especially if this hot weather continues.
My taste was quite badly affected (and still is) and I have had quite a few mouth ulcers this time, so perhaps think about getting mild and smooth food in. I'm currently addicted to strawberry milkshakes, and I think that others find it good to have boiled sweets around. I asked my chemo nurse about the mouth ulcers and she said I should be rinsing with salted water 5 to 6 times a day, so I'm going to try to be more vigilant about that next time around.
You've got the claritin for the aches and pains, but I'd also see if they can send you home with pain killers. I was given co-codomal at the chemo session to bring home with me and have used it just a couple of times because the chemo appears to have aggravated an existing back problem.
I've found that the rest of the symptoms are very like FEC.
Hope that helps, good luck for tomorrow. x
Well after 3 blood tests in 8 days, first T will go ahead tomorrow but at a reduced dose of 75%. Am relieved to have reduced dose, but also thinking if liver isn't coping with clearing chemo, the side effects may hang around a little longer as liver is compromisd!
Any tips for the first few days after T? Have taken clarityn and dex today, trying to drink and attempt Miso later.
Hope everyone is okay
Just popped across from the May thread.
Great to hear you 'sailed' through FEC. I should say though - that staying on FEC throughout is definitely not an easy ride. The cumulative fatigue is something to behold - 9 days bed and sofa bound! Sleeping patterns have completely dissappeared, even in the 'better' time. And when lucky enough to get more than 5 hours, it does not feel as if I had slept. Constant tiredness, no energy at all. And I was fit before this! Aargh!
The mouth is just as bad as on T it appears. I managed to beat the mucositis again with antibiotics, but am left with a tounge, which feels as if it has been scalded with very hot coffee. No taste - such fun cooking - NOT - everything is over salted and over spiced! And I can still not taste it. Hey ho - soon over! Certainly agree with the taste of water - FOUL!
I seem to be lucky with my skin - still not turned into a prune and all dried up. Wondering whether the fortune I have invested in Palmers Cocoa Butter body lotion has made that difference. My nails still are hanging on, too - thankfully not discoloured, but with white ridges for every chemo treatment visible. So in case my chemo brain forgets how far I have got - just need to count those white ridges. And, of course - eye bows and lashes are gone. No chance of re growth until it is all over.
With regard to the care packages given to us post chemo. There is really no golden rule, as we are all very individual and many have underlying health issues, too. So there is no one size fits all, unfortunately.
Just a simple example - Ibubrufen is a great painkiller, but not suitable for those, who are suffering with acid reflux or indigestion.
With respect to Hot Flushes - mine are always worst up to day 10 post treatment and then get very much better. Sage tablets can really be helpful with them, so it may be worth exploring those.
Quick amusing thought to add - when I got my diagnosis I wrote out a big long list of healthy, immune-boosting, cancer-beating foods I wanted to restrict myself to.
I'm now living off strawberry milkshakes and jaffa cakes.
I think that sums up my chemo journey quite nicely!! x
Well, this T thing is a sh*t isn't it?!! So, so sorry we're all feeling so crappy. My initial thoughts about the chemo-mouth have been obliterated by the sudden loss of my sense of taste and, like others have said, everything just tastes hideous. For some reason water tastes particularly yukky. I have found that strawberry milkshake (milk with the powdered stuff added in) tastes OK, so am now using this as my source of hydration.
Can't get comfy and keep having lie-downs in bed where at least I have the space to thrash about.
I was sent home from my chemo with co-codomal (paracetamol + coedine) for my aches and pains. I haven't had any yet (waiting until I'm desperate as I'm not sure how many days you can take it for) but since it has lots of warnings on it about addictiveness, I reckon it might help. I don't get why we're not all being sent home with the same care packages, surely there some 'centre of excellence' looking at what can help ease symptoms so we should all getting the best of everyone's knowledge?!
I called up the chemo ward this morning about the hot/cold flushes as I was surprised none of my nurses had warned me about it (since they go through such a long list of side effects) and they told me that T shouldn't cause them, as hot flushes are hormonal. However, I am on zoladex implants, plus herceptin's a hormone based therapy (I think?) so I wonder whether the T is just accentuating the hot flushes I might be getting from them anyway. Their advice was to start taking evening primrose but that it doesn't have an effect for 6 to 8 weeks!!! Great. However, they did suggest taking it anyway because hot flushes now could indicate a predication to them which could affect me with continuing hormone treatment (eg tomoxifan) so I'm going to get some next time I can bear to think about leaving the house.
I can also recommend zimovane (prescription) sleeping pills if anyone's having trouble sleeping. I took a couple last night after a particularly bad night the night before and slept solidly for 10 hours. While I still feel rubbish this morning, I at can at least tell that I've had a good night's sleep. I hate taking sleeping pills, particularly as I'm usually such a good sleeper, but I don't need poor nights' sleep adding to my problems!
I'm trying cottage pie tonight to see if that's any better tasting. Quiche at lunchtime was OK apart from the pastry, so perhaps a cheese omelette would be an option.
Feeling quite nostalgic for FEC now!!!