well we all seem to be struggling on T. I have my review tomorrow with the oncologist I wonder what the outcome will be, will my dose be reduced, we will have to wait and see, my next chemotherapy is Wednesday and I am dreading it, i still feel so weak.
Jencat thank you for all your comments it makes it a bit better to know you've been through it so know what you're talking about.
So glad most of you now have your pain relief under control.
Holeinone, thankyou for the hug.
Like some of you I have found T has killed the craving I had on FEC and I can't stand the taste of tea, so on a positive hopefully I will lose the weight I put on.
need to have a nap now - stay safe ladies
love Tbird xx
Thank you for your kind comments DiKat x I'm just pleased to help if I can because the forum helped me when I was having chemo.
I took Codeine.a few years back when I had a really bad toothache. When I woke up the next morning it had affected one side of my face-my daughter thought I'd had a stroke! I'm not 100% sure it was the Codeine that caused it, but I'd taken some in the middle of the night, so I can only think it was that and I haven't wanted to risk taking it since. I didn't realise that the Oral Morphine was from the same group, but I didn't have any side affects from it and it definitely helped with the pain. My onc looked a bit shocked when I said I'd been given it (I think it's quite strong!) but I'm glad I was as Ibuprofen wasn't strong enough for the first cycle of T. Btw, I had to wear a red wrist band during chemo to show I was allergic to Codeine, assume your unit do the same, so it might be worth checking that they give you one to wear xx
I move onto THP after my next Fec. I too am allergic to Codeine. Makes me vomit and have severe helicopter head if you know what I mean! I assumed Morphine would have the same effect with being from the same family. Was this not the case for you. How does Codeine affect you? I'm ok with ibuprofen but do have stomach issues so don't like to take too much. Also, I'm not sure it would be strong enough so don't know what other alternatives I have.
Ps really appreciate all of your input on the forums. So kind of you to still support everyone.
Ladies, I'm sorry that you're having such a hard time on T. The bone pain is really horrible. When I had my first T, coedine had been put in my hospital 'goody' bag for me to bring home, but I'm allergic to it, so I came back with nothing not realising I might need something stronger than the usual painkillers. I ended up with a doctor coming out to me and she prescribed Oral Morphine, which certainly helped. I don't where I heard/read this, but apparently the first T can be the worst because your body is getting used to it and I must say the next two T's weren't nearly as bad as the first one and I barely needed the stronger pain relief, so hopefully it will be the same for you x
Sorry you're all having such a hard time with T.
Kateday I had a period that lasted nearly 2 weeks after being fully prepared for them to stop altogether, it did make me miserable.
Really hope you get some relief from the bone pain and some advice from your oncologist on how to manage this. Glad to hear about the negative result on your genetic test.
Tigerlilli really hope you feel better soon - it sounds awful what you're having to deal with, so hope you can get some support and relief soon.
sending feel better soon vibes to all. xxx
Holeineone I'm sorry to hear you're finding it so hard with the bone pain. I hope this eases for you soon. Sending gentle hugs. Thank you for the birthday wishes. My daughter's birthday is next month too so it's always a busy time of the year with Christmas then all our birthdays which like you say is a good distrcation. I'll be exhausted by the time it's mine in March. Pleased my last chemo will be the week before.
I've found the signs of new hair growth encouraging. Just when I was getting used to my wig! Though I suspect it will take a good while to thicken up.
I booked on to one of the Look Good feel better make-up sessions on 14th Feb so I have something to look forward to on Valentine's day! Has anyone done one yet? Sorry couldn't remember who said they were going to one. The lady at Maggie's said they donate around £250 worth of beauty products for each goody bag so well worth going along if you have a centre that runs one nearby.
Take care all - hugs xxxx
Hope everyone is OK, we are a pretty quiet group.
Lou43, belated birthday greetings to your little one, bet he is a welcome distraction when you have plenty of energy. I have also noticed hair growth after last FEC, hoping it grows quickly now!
Kateday, hope your first T was better than mine!
Tbird, really sorry you've been in hospital, this is so trying, and really really tests you, doesn't it? Hugs to you
Kip, thank you for popping in, I've read some of your posts and matched your hair loss and by the look of it gain as well, so I'm following (in a non stalking way!) your hair progress!
Everything appears to have changed since I last posted and it has taken me ages to figure out how to post a reply to the thread not sure if chemo brain or old age!
I've been in a bit of a horrid pain fog since my first T, still have constant all over bone pain and I'm 9 days post chemo, I really hate it. Will need to ask for pain relief as a couple of the days it was really bad, too much for paracetamol to touch. Now it's settling, the tummy rumbles are back, but my mouth feels like it's been acid washed so no taste and very very sore. I've been googling things I shouldn't and getting upset, generally in a downward spiral. Onc appointments have been altered to my low immune week, great time to be sitting in outpatients waiting for an appointment, not!
Sorry It's all doom and gloom here, just want this to be finished really, and hoping for a successful treatment. Thank goodness for the NHS, I'd be done if we had to pay for this.
hugs and love to all November chemo ladies
Well another weekly T tomorrow so trying to enjoy today and get some more tidying done. I wish this grey, gloomy weather would lift again. Was lovely to see some sunshine yesterday though the icy pavements weren't great on the school run. My little boy turned 8 Tuesday so it brought a mixed bag of emotions.
My hair has started sprouting again - looking white as I thought, but feels good to have some new growth. And hairy lower legs again - good job I bought that LadyShave with Xmas money - ha ha!
Hope you're feeling ok after T Kate and TBird so sorry to hear you've had to endure a hospital stay, thinking of you all. xxx
well that's one week I don't want back. I spent most of it in hospital on iv antibiotics, so glad I'm home now.
I think I have left my sense of humour in the hospital - I am so fed up of it all, but also aware it's got to be done. I have a week off now before the cycle starts again 😁, I hope my next T won't be as bad. Keep safe ladies.
love Tbird x
Hello lovely ladies!
Kateday, good luck with your first T today, hope it all goes smoothly for you. I can understand the bell ring making you weepy, I'm just all over the place emotionally at the mo. I don't think there's a bell at my chemo ward. Sorry to hear of your swollen PICC line, hope all is sorted now.
Liloc, all that for a miserly little cold virus, how annoying! My OH is also a non medical doctor, and he has been fine with giving me the filgrastim injections, just remember to go in at 45% angle if you pinch less than 2" of flesh (had to find that out through Google!) I am also needle phobic (have passed out having bloods done and in chemo chair ) I have my injection at night as they advised it when we were discussing times due to OH's work pattern.
Lou43, hope you are recovered from the last round now, I have read about the accumulative effect of chemo and I appear to be feeling it too.
Found myself a silk headscarf in a charity shop for 50p, a really nice Past Times one, so now I have a swanky turban for reclining in the evenings
T doesn't really like me, although I'm pleased the smell is different from FEC, cor, what a pong! I could smell it coming out of my skin, vile!
So far, T day was OK, slept for 5 hours that night, despite steroid overload, but downhill after that. Friday was fine, went out for the day with OH, no problems, but got home and started to feel tired. Had no sleep that night or the next, not one jot. Now on vastly reduced steroids for today then no tablets to take so hoping sleep comes tonight.
Bought myself some figs to eat and get things moving, as I can't take senna tablets (have tablet swallowing issues!) and already have wiped out feeling with bone pain, especially jaw and teeth, bit odd! Having to take paracetamol already for pain, it's mildly annoying at the mo and I hope it doesn't get worse. Also noticing lots of heart palps with T, not pleasant especially with little exertion. Strangely, not so much of the craving with T either, and on such high dose of steroids I thought it would be worse, I do wonder if it was just FEC that made me crave food?
Edited to add: Just remembered I have mouth changes, have a mouth that feels on the point of soreness so am being careful with certain foods as I don't want a breakout. I'm using baking soda toothpaste as an onc mentioned rinsing with bicarb, and also gently brushing my tongue when brushing teeth. Lots of swilling with water, which I have surprised myself by actually liking to drink as well!
Well, that's enough from me for now, hope you are all doing OK.
Keep going ladies
Hope you're all doing ok. I haven't posted for a little while as had a rough time after my last EC before new year. Ended up feeling rubbish and really down over new year but picked up in week 2.
Had my first of my weekly T chemo yesterday and went ok but the piriton they gave me beforehand made me feel really wiped out. However today I feel ok again (just usual rosy cheeks) so hoping it will be manageable weekly and I'll have less fatigue. So I'll keep you posted Gogga on how I get on with the next week and 2nd T next week.
I'm lucky it works for me as know it's not practical for everyone. I have lots of offers from family and friends to take me each week as there's no way I would have been up to driving myself home. I did get the horrid metallic taste in my mouth during the chemo which I'd not noticed before so my mum had to go and buy me some wine gums which helped. Tea tasted yucky which is a shame as a nice cup of tea is usually very welcome at chemo. The tea trolley ladies keep us all entertained.
Liloc, hope you go on ok with the injections. I did them myself which I found ok but reacted badly if I injected too close to mealtimes and swapped to earlier in the day. I needed a hot water bottle and took paracetomol to get through the backache / bone pain but think I reacted worse than most and it was only to the first 2-3 injections the rest were fine,
Take care everyone. xxx
Back from first T, only delayed because they spent an hour seeking a vein! I had Herceptin as an injection and it was a little painful but fine, then had to have T intravenously and by the time that was done and the flush I was good to go. We were let out just before 1.30 so less than 4 hours all in, including settling me as my BP was high following massive steroid doses and walking quickly through hospital and car park.
I was up all night with the steroids and felt a bit anxious and weepy, need to focus on just two more chemos to go though. Oh, made a prat of myself in the hospital, thankfully only two witnesses, pulled my woolly hat off and my wig!! Hastily had to whip it back on again and use selfie camera to adjust
Sals, I will get the epilator out tonight, most of the hairs have snapped off it seems, so I'll finish the job
Thank you pigeon for the best wishes, all good so far and no immediate hit from the drugs, although I do have a huge pale patch on my leg where the herceptin was injected!
Will report back as the days go by but I am prepared for a pain slump by Sunday.
Best of luck for your treatment today! xx
I have to say, while I haven’t exactly been OK with T, I haven’t been as bad as some of the other ladies on here - although I had a reduced dose this time, so this may affect it.
Oddly, the bone pain didn’t really hit me until yesterday (day 6), and is pretty bad again today. Ive also had heartburn, a sore mouth and throat, terrible taste buds, and the worst “chemo brain” since I started chemo.
But I had a terrible time with side affects on FEC, and if I had to pick one, so far I’d choose the T.
I’ll likely be back to 100% dose for the next treatment if my liver cooperates, so we’ll see if it carries on this way.
Hello ladies, I will be joining the T girls tomorrow Is anyone in this group OK with T?
Meant to come on here a couple of days ago but had appointments all over the place! This must be what a social life feels like, going out all the time and getting invites
Tbird, wow, so sorry you've been so ill. Gentle hugs to you and hopefully you will fly through the rest of T.
Pigeon, thank you for your informative reply, I've cut my nails short and managed to do the base coat nail hardener stage, and am leaving it at that for now. First T tomorrow morning so may paint my nails when I get home. I am also squeamish about nails (amongst other things!) so hope to avoid any nail sagas or I may be wearing massive plasters all over my finger ends!
I've started my 8-a-day steroid diet in readiness for tomorrow, thankfully no bright red face so far, I do feel completely wiped out though, with the occasional racing heart on slight exertion.
Hair talk: Unlike most of you, I chose not to shave my head, I've never had my hair cut really short, a just-off-the-shoulder bob was as short as it got. I chose to brush my hair furiously until it mostly came out, and it did between day 14 of first cycle of FEC and by day 7 of 2nd cycle it had gone, bar a few stragglers. I've actually not looked at my bald head in a mirror, and don't intend to, so any hair changes are noted by feel. Tonight I noticed I have a Manchu style ponytail left on the top of my head! Most bizarre!! I also have just one fringe hair at the front which waves at me when I have my wig on, the defiant little blighter! WTF is going on with leg hair though, why does it not go? After losing our tresses the least we should get in compensation should be hair-free calves?! Good news is some tiny moustache hairs have gone, and my one and only chin hair has disappeared too. Not even on T yet and my eyebrows and eyelashes are down about a third, hairless mole rat here I come
Will report back on T tomorrow evening, I'm hoping to be OK for the first few days at least!
Love to you all
Ended up in hospital yesterday, had to stay over night having intravenous antibiotics. Came home lunch time today feeling so much better. I had liquid morphine in hospital which really helped with the pain, just feeling a bit sickly from all the medication again.
on the plus side everybody has reassured me I shouldn't feel like this on T 5 & 6. How's everyone doing.
Love Tbird xx
Glad I could help Tbird and Sals x I felt really rough on my first T with the pains in my legs and feet. Ended up having a doctor come to see me (2 in the morning!) who prescribed Oral Morphine as I'm allergic to Coedine and that definitely helped, but I didn't need to take any on 2 and 3 x
thank you so much for your response and reassurance, for a few of us this has been our first T and some of us have found it really hard. It's good to know the 2nd and 3rd won't be as bad. I thought I had got away with it had my T Tuesday and Wednesday felt fine until Friday afternoon then the proverbial bus ran me down. Starting to feel a bit better now using both ibuprofen and paracetamol and hot wheat bags. Hopefully will sleep tonight and be better tomorrow.
Stay well girls. P.s. I had to cancel my friend who was going to teach me to croquet because I felt so rough, but I can always reschedule.
love Tbird xx
Hi Tbird and Sal, I'm from the Oct '17 thread and like you, found T hard. Don't know if this your first lot of T, but just wanted to say that the 2nd and 3rd one were easier for me, so hopefully they will be for you too x
well this T takes the biscuit I can't remember feeling as rough as I do since all this has started. Today I have taken ibuprofen and my sister sorted out some wheat bags and halleuia I have had some relief, the first since Friday afternoon. I have a sore throat but temps are fine, so fingers crossed I've put the worse of it behind me now - hope everyone else is doing ok - how are you Sals
love Tbird xx
I'm coping with the T it's this virus I've picked up, I suppose as immune system is shot to pieces it will take longer to shift at least got another week before next bloods are due, I've completely lost my voice so nice and quiet in my house 😅
Love Tracy x
i felt so so rough yesterday and paracetamols wasn't helping, still a bit rough today but hopefully tomorrow should see an improvement.
I have heard your body has a memory and as This is a new treatment it might be rough but other ones should be fine - fingers crossed.
how are you coping
love Tbird xx
Did you take any painkillers for that bus run over feeling. If you did what did you take.
Love Tbird xxx
For me, the injection process wasn’t drawn out at all (apart from the week’s delay), but I’m not having herceptin etc. For me it was just an hour on the drip for the T, then a 10 minute drip of saline to flush it through my PICC line, then off home.
Ive felt surprisingly okay today, we’ve had my father in law round today replacing some tiles in the kitchen after we had a leak under the floor (nightmare), and I was able to sit in there and even help out a little bit with passing things to him, making cups of tea, etc. It makes a change - the day after FEC, I was it was a struggle for me to get out of bed to go to the toilet!
I’ll keep you posted with how I get on with the T over the coming days.
Re: nails - I’ve had the following advice from my hospital:
BCN said the chemo unit would recommend a particular gel nail polish (they didn’t)
Chemo unit said to just paint them black/dark
The “wig and well-being” shop in my hospital suggested cuticle oil.
What I’ve done is - a base coat of OPI “Nail Envy” nail hardener, a coat of black polish, and a coat of a dark grey (just because it looks a bit nicer than the black).
And then I’m also rubbing my fingertips with OPI “Avoplex” cuticle oil and Nivea cream morning an evening, and topping them up with Lanolips balm when they feel dry any other time.
I’m squeamish about anything to do with nails breaking or falling off, so I’m desperate to try anything as long as it’s not too expensive. I went through a bit of nail polish phase last year so luckily, with the exception of the Lanolips, I had all this stuff to hand.
The Lanolips, I found via Liz Oriordan’s blog, not sure if the spelling is right - the breast surgeon who had Breast cancer. Its great for dry lips, dry fingers, etc - I’ll carry on using this even after treatment!
Phew, this post has turned into a bit of an essay 😂
All the best to all of you! Xx
Those of you now on T, thanks for posting your experiences, it's all useful. I start T this week and not looking forward to it, especially if it is rather drawn out.
Tracybev, sorry to hear you've had a virus, but good to know that the hospital dealt with you so swiftly.
Liloc, good to hear you are finally home, yay!
Pigeon, hope you are not feeling too drained at this point after your T, I also had bone pain on FEC so reading your experiences with interest.
Tbird, hope you get on OK with crochet, something I would love to do as I always gravitate towards gorgeous crocheted jackets and cardis. Think I need to find some classes and get myself enrolled.
Mouth issues, I haven't had any major problems but wanted to try preventative methods. Not sure why I didn't think of this before but one of the oncologists I saw said to use bicarb if I had mouth problems, I've bought some baking soda toothpaste from a pound shop and am finding it much kinder to my mouth.
Anyone on T care to share their nail care plan? I'm still undecided as I hate nail varnish on my fingernails and also they are chemicals, which we are supposed to avoid. I'm just using cuticle oil and cream at present. FEC has caused no damage or change to my nails so far (it's just wrecked my stomach! 😞 )
Keep going girls, we can do this!
Hi Pigeon, glad you managed to get #1 T done today, I was doing fine up until today had the "hit by a bus" on day 3 but by yesterday was feeling ok, woke up this morning will a really sore throat but normal temp but by lunchtime had spiked to 38 spoke to chemo hotline told to take myself off to a&e who were absolutely brilliant treated like a vip all investigations and treatment started within an hour the only wait was for bloods to come back which thankfully were all ok was told the platelet count was fantastic....those bloody injections are working 👍they even emailed the oncology team who popped down to make sure I was ok, so after iv abx was allowed home....no infection just a nasty virus 😲
Good luck to all who have or are about to start T
Stay strong ladies, take care of yourselves we can do this 😘
Finally got to have my first Docetaxel this afternoon after last week’s delay, my liver function went from 171 last week to 99 this week, (40 or below is normal) which although not perfect, I think is a pretty big improvement! And of course good enough for the team to give the okay for treatment to go ahead, which is the main thing.
I did have to have a reduced dose at 80%, so hopefully the side effects will be a bit kinder. 🤞
Tracybev, how are you doing following your first T last Friday?
Sals and Tbird, by the sound of your experiences on T so far, I’m guessing I’ll start feeling rubbish and achy by Monday or so - day 4? Bit nervous about that “hit by a bus” feeling, but I know everyone is different so we shall see. That said, I did have bone aches even on FEC, so maybe like you said Tbird, it is more of a side effect of the filagrestim injections? Anyway, I’ve got he painkillers and bath salts at the ready. 💪
Tbird, speaking of chemo brain, I’ve just had an extra week of no chemo so you’d think my chemo brain would be improved, but it feels like mine is just getting worse and worse! I couldn’t remember what I had for lunch today 15 mins after I ate it! 🤪
All the best, ladies, xx
Sals, I'm a bit like you aches starting to creep in, I have had a extra day on steroids (yesterday) and if I'm aching like this now I can only imagine what tomorrow will bring - my one remaining energy level has frazzled out today ha ha. On the plus side chemo foggy brain is not too bad and so far no feeling of sickness. Like you my chest is a bit tight and I feel so bloated but as you say probably the streiods. I was wondering if the joint pain is from those littLe piskey injections we all love so much. But anyway if this doesn't get worse then it's very do able. Just to add I am very red so on antihistamine foR a few days. It's nice to swop side effects.
Lilocci I was so happy to hear you escaped Casa NHS and slept in your own bed, now rest and let people look after you.
im sitting here now waiting for Ken Bruce's pop quiz - I so rock and roll ha ha. My friend is coming to visit on Monday to teach me how to croquet? I have nine grandchildren staring from age 18 to age 7, two of them will be going to uni this year so I want to make blankets for them all, I don't do things by halfs.
take care ladies
Love Tbird xx
the reason I had to have it in 2 days was because the first targeted drug I had Took an hour then I had to be observed for 4 hrs to make sure I didn't have side effects after that the 2nd targeted drug took an hour then I had to be observed for another hour for side effects. I didn't know until then I had to go back today - apparently they don't like to give you the chemo until the next day so if you get side effects they will know which drug caused it - for number 5 +6 I will have both targeted drugs and chemo on same day as I didn't have any bad side effects.
i wasn't offered ice mitts or given any advice about uv lights, I think I might give breast care nurse and see what they advise (thanks for the tip).
hope everyone stays well
love Tbird xx
Well said Tbird, we are all behind you Liloc, enjoy that ice cream and fingers crossed for 24 hours at normal temperature
Tbird, absolutely no shame in having a little emotional release, I think we all need to do it every now and then during this treatment, just to stop us boiling over! Congratulations on getting through your first T, although I'm anxious to know why it took 2 days? Were you offered any of those ice mitts or were any suggestions made for dealing with side effects at all? I hate painting my fingernails but am thinking about it, I understand the damage is done due to UV exposure after having T, and as I always forget gloves in Winter I might just paint my nails to stop the light getting at them.
Keep strong November ladies xx
so sorry you're still in Casa NHS, don't save your ice cream eat it and enjoy. It's so frustrating but you are in the best place ( I bet you're so fed up of cliches).
Try and enjoy your private room and the peace and quite and try not to get too down we are all rooting for you and sending hugs and positive vibes.
Love Tbird xx
i hope everyone is keeping well.
I have just just finished my 4th treatment which was my first T. My T consisted of Pertuzumab, trastuzmab which are targeted drugs and docetaxel which is a chemotherapy drug. I had to have them over 2 days which was a bit tiring but no 5 and 6 will all be done on the same day fingers crossed. Apparently if you don't get side effects whilst it been adminastrated then side effect shouldn't be much - just them little blasted injections which get you (oh the pain) but watch this space and I'll let you know.
to be fair though I did have a major melt down yesterday morning and sobbed like a lass but it was just the fear of the Unknown all over again but apart from the length of time it took it has been fine (let's hope I haven't spoke too soon).
love Tbird xx
Liloc, oh my goodness!
Are you out of hospital yet? At least they are sorting you out and I hope you feel much better soon.