Ive just been reading about Kip being asked to go on the Aspirin trial. She has started discussing it in the May surgery thread. Hope that helps x
Just popped in to report that at the mo I am finding T no 2 (with Herceptin) doable. Not so much pain as yet, that might kick in tomorrow as I am day 4 after chemo! I've cheered myself up by buying a couple of ear cuff things online so I can flash a bit of bling with my new short hair (when it grows!). Might even consider colouring it for the first time too! I understand that there is something called chalk colour I can use? Not a clue!
I started a thread somewhere else about Add Aspirin trial as I've been asked to go on it, not sure if that is bad or good, if anyone has any info, please share!
Hope everyone else is doing OK, we must all be nearly there on this hideous chemo journey?
Take care ladies x
Kateday, so pleased you are home, hopefully you can catch up and get back on track with your last few chemos, like you say, nearly there . Wow, sounds like your hair is doing well, I'm a tad jealous, checking mine every day but mm growth is a bit like watching paint dry!
Tigerlilli, really pleased you have the all clear after colonoscopy, you really didn't need that after all we are going through. Did the bleeding start on T? One of the oncs I saw said it causes broken capilleries, I have had minor nose bleeding and mouth on T and also broken veins on face. Second T has not yet caused the same issues so fingers crossed for you, and yes, also floored by T, on my second one now and propping myself up on the computer! xx
We can do this girls xx
Hi Ladies I have been off to have my colonoscopy due to bleeding from the rear end .... Delighted to say that it was all clear !! No nasties lurking. What a relief. I can see that we are all finding the T really tough. I hope that this time around I am a little better prepared and handle it better... It floored me for 10 days last time. Just keep thinking that there's just 2 left.
A huge well done to everyone who's been in hotel NHS. It's tough but we can all do this.
I’m home now
yes infection but they couldn’t find the source
let me tell you ladies of you feel unwell call the line
sunday morning fine lunch time felt unwell took temp 36.7 by 4.30 it was 39.4
they removed my PICC just in case so now waiting for appointment for a portacath
My Monday chemo delayed not sure till when see oncologist Friday
I was given the injections with T and five as I had with Ec
my hair has been growing a while so now have my whole head covered but it’s nearly white 😂😂
were nearly there ladies well I still have three to go but hey nearly there xx
Hope we are all enjoying a hospital free albeit windy and wet weekend!
Liloc, feel free to join in with hair/no hair shampoo chat, it will soon be growing, and a bit of massage might help it along? Your drug pack sounds different to mine, how funny that there appears to be no standard kit? You might notice more mouth issues with T, and I have had constipation all the way through, was given fabulous mouthwash by chemo nurses, who also gave me something to soften things up in the bowel dept, that's working too and I feel lighter than air! (OK, maybe not but I feel better without being blocked up). I was floored by T on day 2/3, and the culmulative effects of previous chemo appear to be kicking in, making recovery from these later sessions so much slower
Tbird, fingers crossed your last chemo goes as planned, nearly there!!! Not nice for you to feel that at this stage everything is still up in the air, rant away my dear, we understand!
Now I've fixated on hair growth, I'm also worrying myself silly about recurrance, trying not to bother hubby as he gets upset, but my mind won't leave it alone, bit of a Debbie Downer this evening
Stay well ladies
so sorry to hear some of you are suffering with T. It's hard but keep going the end of chemo is near.
im still not sure if I'm having T on the 20th Feb (should be my last one), or just the targeted treatments like last session. My liver scan was good, no problems, so realistically I should be able to have the T, but still haven't had a date for oncologist review which I normally have the day before chemo. My head is spinning because the surgeon has given me a date for my surgery 20th March, but this can't go ahead if I don't have any treatment on 20th Feb 😱😱😱😱😱. I also have to sort out dates for pre operative assessments, a week before surgery, which doesn't sound a lot to do but at the moment it is a lot. If my chemo/targeted treatment is cancelled on the 20th Feb because I haven't had a review from oncologist then I have to contact the surgeon to cancel my operation, contact nuclear medicine to cancel my radiation injection, then rearrange all this once I know when the treatment is (you'd think the hospital would do all this, but apparently they don't at my hospital). I'm scared silly about the operation already and now with pressure of not knowing feels like "the straw that broke the camels back" 🐫🐫.
My BCN tried to find out what was happening with the oncologist review, and was told the oncologist was available for her clinic, but she didn't have any colleagues available to do the clinic with her, so she might have to cancel her clinic. 😰 No clinic no chemo.
Sorry about my rant ladies, it's all I seem to do at them moment.
love Tbird xx
Back from my first round of T a couple of hours ago. Ate some pasta bake my sister had made me as soon as I got in in case I started to feel funny but ok so far, although exhausted. Have been reading back on all your recent posts to see when side effects kick in (the proverbial bus 🚍🥴) and it looks like Day 4/5, is that right?
Surprised by my drug pack this time though, just one box of Domperidone for anti-sickness as and when, compared to 5 different drugs with EC and a box of co-codamol capsules to take if I get joint pains. That’s it, no steriods, etc (although I had a steroid on the IV before chemo). Have got 3 days of injections for Days 5,6 & 7 to boost my white blood cell count but the oncologist said that was only because of my neutropenia history, they didn’t usually give out the injections for T. So feeling a little bereft of medication, hopefully it’s enough to get me through (have I become a drug addict in the last 3 months???💊😜).
Holeinone, well done on planning to work this afternoon, I was really dozy in the chair and still feel totally spaced out so no way would I feel up to any work. Typing this and thinking, wonder if I’m making any sense?
Kateday, really sorry to hear you’re in hospital, is it an infection issue? Really hope you’re well enough to come out soon, know you have your daughters at home so you must be missing the family. It’s such a bummer but keep in mind they wouldn’t keep you in if it weren’t in your best interest. I had a rap on the knuckles from the oncologist for not going to A&E in my last cycle when I had temperature spikes so it’s been put on my records that I am a naughty girl so will have to go in this cycle if I start feeling shivery again.
Afraid I haven’t got enough hair to join in the shampoo conversation (shaved in first cycle down to little spikes, they’re softer now rather than bristly but still not long enough to classify as hair).
Love to all xx
Hi Pigeon, thank you for the good luck, it must have worked as everything went without incident and I'm home now with some work lined up for the afternoon to keep me out of trouble.So far so good at the mo. Although if last round is anything to go by I will be OK until Sunday. Hoping body is used to it now and I did notice the Herceptin dose was tiny compared to last time, so that could be a factor!
Nurses overrode oncologist and gave me mouthwash plus sachets for if I get too many mouth ulcers, also told me I can take ibruprofen as well as paracetamol as I should not be left in pain. And they have given me two medications for bowel movements as again I should not be left unable to go to the loo!
Hair: my eyelashes and eyebrows started disappearing end of last FEC and start of last T, not many lashes left but with a bit of eyeliner it's not noticeable. Eyebrows I managed to find an old powder kit and have been drawing them in, still have half the brows there but getting used to where they are!
Shampoo bars, I was going to make a trip to the nearest Lush (Worcester I think) but remembered being overpowered by the smells and scents of the shop, so tried the Folk soap on a whim. Have to say hubby does not smell like a tarts boudoir and the scent lasts but is subtle, he can smell it on his skin at the end of the day so it is possibly having a deoderising effect too. Plus he isn't having to use moisturiser on skin or conditioner, although we will buy a conditioning bar. I like the smells as they are quite herbal, not girly, but we have chosen some of the more masculine scents! I do intend to try the more honey milky based ones too as we want to use them everywhere. I did notice the Folksoap shampoo bars are over 100g for £4.15 (or three for £10) and so considerably cheaper than Lush which I think are £7.50 for 55g. I'm usually swayed by money! We bought the nettle, flax, oat shampoo bar, the French Green Clay castile soap and the mens Sandalwood and patchouli soap for £10 plus postage of £3. Cost wise, I think we can buy all of what we need for around £36 and it should last us more than a year. I'm now looking at soap dishes to put them on! Another thing, she does do mens beard stuff and shaving soap, hubby very eager to try as he has just switched from disposables to a proper handle with replacement blades as it is more eco friendly.
I've been asked to go on the aspirin trial, anyone else?
Take care and stay strong ladies xxx
Oh no Kateday, sending you healing thoughts, and hope you get to go home soon!
T really is awful, I seem to have got off lightly when I had a reduced dose last round - this round with the full dose, I feel like I’ve been hit by a bus! Especially my legs, and my lower back 😖
Tbird, dont worry about sounding vain - between the bald head, the round flushed steroid face, the missing boob, and the weight gain from T, I feel like Humpty Dumpty and am definitely looking forward to my hair growing back and starting to look normal again 😂
I also had some hair that didn’t fall out from the FEC (I shaved it to a #1) and the rest of it it has started growing back a bit since I finished FEC, but I was wondering about it too - is the T going to make it fall out again?? My eyebrows and lashes thinned a bit towards the end of FEC but haven’t changed much since I started T, but I heard that T makes these fall out too?!
Ive been washing my head with E45 wash, as it keeps my scalp nicely moisturised (I don’t have enough hair for it to make it look greasy), and had been planning on getting the Lush shampoo bar recommended by some of the other ladies for when I finish chemo, but I’m really liking the look of those Folk Soap bars, Holeinone! They look lovely, and I would much rather support a small business! Do they smell nice?
Hope everyone is coping well with their treatments, spring is coming and chemo will be over before we know it! 💪💪 and Good luck for round 5 today Holeinone, hope it’s kind to you 💗
I'm currently busy, busy, hyper, hyper due to massive steroid intake as I'm T no 5 tomorrow
Kateday, oh no you poor thing! I agree with you, T is really awful. I am hoping to get through without incident but I see on here how many ladies are having to have hospital admissions with it, it is so hard. Are you more than halfway through your chemo regime now? You can do it girl, we've got your back
Tbird, I could have written your post, and you are certainly NOT vain! I am very low maintenance generally but the baldness I find incredibly upsetting. I have not yet looked at my bald head, and the OH has only had glimpses. However, I'm asking him to check the back of my head daily for regrowth, he says he can see some dark hairs appearing (I had brown hair) which gives me comfort. He keeps saying "give it time, it will come" yes, but I'm not confident in the wig and I just want to get excited about a short haircut! I've never had short hair ever and am focussing on this to get me through.
I was a shave rebel and didn't, I just brushed my hair out, then trimmed the long stragglers to fit under the wig. I have a very fine Manchu style pony tail on top of my head and one defiant fringe hair smack in the middle of my forehead. I wonder if the hairs that remain have now stopped their growth cycle and gone into the resting phase due to chemo and will naturally fall out in a few months? I hope so otherwise I will have a very multi layer mullet when the rest of my hair grows! I have noticed arm hair coming back but absolutely nothing in armpits, not too bothered about anywhere else!
Shampoo: I'm actually using shampoo and conditioner, I'm using Dove at present, just rubbing it over the baldness. After seeing shampoo bars mentioned on another thread (Lush new bar I believe) I had a look on the handmade site Etsy and found a lady in Wales who makes gorgeous soaps and shampoo bars, so bought some. Hubby has very awkward long curly hair and has tried the shampoo bar (I got the one with nettle in for regrowth and stimulating the scalp) and loves it, and he did not need to use conditioner as the bar is not drying. The company is called folk soap and they have a website (I will now attempt a link) They also have an offer at present of 3 bars for £10, the soaps are also good Folk soap website I will try the shampoo bar after I have finished chemo as it is a growth stimulant and although only nettles, we all know how powerful herbal remedies can be as T is derived from the Yew tree!!
I have discussed the above with hubby and we are now using up our liquid soaps and shampoos etc and will switch to the solid handmade stuff as it has no chemicals or packaging etc. One of many small changes we are making following my diagnosis.
Hope everyone is keeping well, and those of you experiencing troublesome SE's may you recover quickly xx
i must say not liking this new style site. I posted a post yesterday all about hair - didn't notice I had to say I'm not a robot and then for goodness sake my post disappeared, and I didn't have the energy to post it again.
The post was has anyone started to have hair regrowth, if you have what shampoo are you using.
Also I still have some old stubble left from where my hair was shaved. What will happen to tHis old hair, will it still fall out and can it damage my new hair growth.
sorry if I sound vain about my hair but I'm so sick of concentrating on all the negatives from my treatments, I thought I'd change tack.
hope everyone is coping with treatments especially the dreaded T.
Love Tbird xx
ladies , how are you all holding up , T continues to be my nemisis been in hospital since Sunday
Monday chemo will now be postponed , just want to get to the end of what feels like a very long 8 cycles
well done all of you approaching your last cycle you must feel bloody amazing
Hi ladies, hope you are all as well as can be.
Pigeon, thanks for the nail info, stil undecided, but like you am liberally applying the cuticle oil and am also using hand cream morning and night, because I have also noticed the cuticles parting company with the nails, eek! T really dries you out, doesn't it?!
Liloc, time will fly for you too, and soon it will be Spring and all your chemo will be behind you. The reflexology sounds good, might have to investigate that. I think you will be best guided by your oncologist with regards to the mastectomy, my first thought when I was diagnosed was to ask for a double mastectomy, but I have read about a lumpectomy and treatment being just as effective. The concoction from Italy sounds interesting, it was thoughtful of your friend too. I also saw A Star is Born, and thought the same, very long and more of a documentary I felt. Still, I liked it even if I lost track a few times, I can see why it is up for so many awards.
My nails are now painful again, I've had a week with no pain now trouble using fingers, gah, b****y chemo!!!!! Also developed a dry cough on T, as well as a nose full of dried blood each morning and some broken capilleries on my face, who said they looked like Darth Vader without the helmet, me too!
I have mixed emotions about more T chemo this week, it took a fortnight to feel well again and I've been playing catch up this past few days. I'm fed up, but will soldier on no doubt.
Keep going November ladies, we can do this!
Hi all, glad to hear you’re all getting through your T cycles, with ups and downs. Seem to be ticking them off fast. Jealous of people who can see the end of the tunnel for chemo, I don’t start my first of 4 til Thurs and don’t finish til April which still seems months off. Still not feeling great, every day I wake up with some new ailment, today it’s a cough out of nowhere and feeling sick after a trying a concoction a friend brought me from Italy. It is a honey and aloe vera mix made by a closed order of nuns in a convent in the foothills of Trento that is meant to boost your immune system. Tasted ok but both times I’ve tried it, I’ve spent the day feeling sick so not going to try it again. Feel guilty as she had to fly with cabin baggage especially as it’s liquid but don’t feel it’s doing me any good...
Was nice to see her though, so at least I’ve managed to be a bit sociable this week. Even made it out to watch a film at the local village cinema club, A Star is Born, very good but very long so my concentration was waning by midway. Stuck it out til the end though so counting it as an achievement.
Got negative results for my gene tests which I’m pleased about for my sister and nieces. For myself it wasn’t so much of an issue, I think I would have gone ahead with full mastectomy options if that eliminated any risks of recurrence. I never want to do chemo again. I need to talk to the oncologist or the surgeon about the risks involved with triple negative, grade 2 BC.
Other nice thing I did this week was a reflexology session (Macmillan offers patients 4 free complementary therapy sessions at my hospital). It was lovely, very relaxing, nearly fell asleep in the chair. Only ruined by having to wait around nearly 2 hours for an ultrasound afterwards which wasn’t as relaxing.
Hope you’re all having a nice weekend and not suffering too badly. xx
Thanks Holeinone! I can’t believe I’m so close to the end now, it felt like such a long way off when I started in November.
Not much on the side effects as yet, I did have some slight nausea on the way home after treatment, and my tastebuds basicallly immediately switched off - my dinner last night tasted of nothing!! I start the injections tonight, hopefully the bone pain won’t be too bad between that and the Docetaxel. 😬 My onc included some co-codamol in my goody bag, so that should hopefully help if it gets bad.
Ive kept my nails painted in dark colours since I started the T, no idea how much it’s helping... I did notice when I stripped the polish off last week to reapply, that the white “half moons” under the ends of my nails had all but disappeared...?? 🤷♀️ What I’ve found most important, for me at least, is keeping my cuticles well oiled and moisturised. If I get lazy with it and start skipping, I can really tell a difference, as they start peeling and pulling away from the nail a bit.
Tracybev - congratulations on your new granddaughter!
We’ve only had a very slight dusting of snow here in Staffordshire, which melted within an hour or so. We did have a day where it didn’t snow but the trees had the most beautiful white frost crystals on them, it was really lovely.
Re: radiotherapy - my specialists said that it starts typically 3-4 weeks after your last chemo - but I’m sure that will depend on your hospital, and how well you’re doing after the chemo, etc.
All the best ladies for getting through these final treatments! We can do this! 💪💪💜🐦
Pigeon, woohoo, just one more chemo! I'm a tad jealous, hope the full dose is kind to you x
Tracybev are you also nearly done with chemo? If so, hope the s/e's are minimal for you on the homeward straight. A new granddaughter? Wow. someone to keep you busy and your mind occupied, a great distraction! x
We have minimal snow here in Worcestershire, but it's bloomin' freezing! Had a very long walk yesterday and then a glass of wine with tea last night, I'm not a great drinker, maybe a couple of units a week at most, but I have to say I enjoyed that glass of wine! Think it helped me sleep as I was zonked after the walk, really achey.
I've been trying to figure out if I should paint my nails but there seems to be mixed reviews as to whether it works. Nurses said it does but I hate having varnish on my fingers, might see if I can find a cheap bottle of water based varnish. My finger ends and nails were painful at first on the T, and are now tender again after just over 2 weeks so I'm hoping massage may help
Hope everyone is good, have a great weekend ladies
Hi ladies, hope everyone is doing ok ❤
Well I'm one week post #2nd T and s/e have been minimal, no nausea and very little bone pain so here's hoping that 3rd and final one on Valentine's day goes the same way ! Hope it's as kind for you all 👍
Haven't heard anything about when radiotherapy starts yet but seeing onc on 11th so maybe will find out then.
How's everyone coping with the snow ? I live in West Sussex and have had hardly any... It's currently raining !!
Also awaiting the birth of my granddaughter who is due to arrive chemo week !!
Stay strong 💪 ladies this part of the journey is nearly over xx
Well, my second Docetaxel was okay to go ahead at 100% dose today - my liver function was down again from 99 three weeks ago, to 72 (I think?) today. (40 and below is normal, but they make a judgement call on the day on whether to proceed with treatment) So that’s good news that it’s been improving, anyway.
Now I just have to wait and see how I get on with the side effects on the full dose!
So that’s it - one more round of chemo to go now!
Good to see a few posts, so nice to see you are all OK.
Sals, great to hear the steroids are helping you be superwoman! I'm hoping the 2nd T is much kinder.
Clarabella, think I would mention those tingly palms to your onc, I'm sure it's one of the things we are supposed to notify? I had it very briefly, but since then my hands and feet have been very warm, unlike me as I'm usually freezing cold! Also had the gyppy tummy, never came to anything but T can give you the runs, although like you I also suspect the paracetamol.
Tbird, I'm sure the oncologist has some leeway built in to the treatment plan depending on how we react, there must be flexibility with dosage as I've read other ladies having treatment cut to 80%, seems pretty common. Good luck with the liver scan.
Pigeon, sorry to hear you are fed up, feel free to rant, it helps! I think just after the halfway point is so difficult, we are so near yet so far from the finish. Good luck with your second T, hope it is kind to you x
Juzcooper1971, great news on your liver scan. Your chemo regime sounds very tiring, hope it all goes well for you.
Well, my onc refused to reduce the T even though I was in a lot of pain, he even refused painkillers, thanks for that! I have to take paracetamol if I get the hideous bone pain again.
My hair is starting to come through, but I apppear to have the worst case of cradle cap in a middle aged woman! Not sure if I should exfoliate my bald head or if that will damage the hairgrowth.
Treated myself to a hair stimulating shampoo bar from a seller on Etsy, she's posted it today so I can't wait to try it out. I also treated myself to a small piece of silver jewellery, one of those ear cuffs, so I can show it off with my new pixie haircut (when it grows )
We have had snow here with more expected (I'm in Worcestershire) and everywhere looks very pretty, hubby and I are off out for the day tomorrow with plenty of walking planned as I'm in week three and finally feeling human (apart from the constantly grumbly tummy and the horrible taste in my mouth), plus I've put on 4lb, which I think is water retention, lack of moving about and blocked bowels
Stay well ladies! xx
Hi All, I haven’t posted in a while 2nd and3rd week after T last time I was back at work and been busy kicking of the year! Had my 2nd T and herceptin on Tuesday have been feeling fine although crazy high from the steroids - I slept 2hrs Monday, 3 Tuesday and 3 last night no catch up in the day but got shed loads done! But now the big T bus has hit me, so that’s probably me and the sofa for the next couple of days! Anyway it’s the penultimate chemo for me too, although there are 15 more herceptin every 3 weeks and oestrogen blockers not sure which one yet - anyone know anything about the different types? Like everyone i’m sure chemo has been hard but I have been quite lucky I cold capped and so far with one to go have my hair and I have not had any side effect that have had me back in hospital only the blood clot for a few hours, but whilst can’t wait to finish the last cycle it’s a bit scary to think about going through scans again etc, Will this journey ever be over I suspect not for a good few years. Good luck and keep going you strong November ladies 😘
Hi Juzcooper1971, so happy to hear your liver scan came back fine, fingers crossed mine will too.
I had the two targeted drugs yesterday and I'm feeling good, and looking forward tO a 3 week break from Doctaxel, hopefully by then my liver levels will be back to normal and my body stronger so I can have full dose of Doctaxel and the two targeted drugs to finish my chemo.
Pigeon, I would be very interested to know how you get on with your second Doctaxel, hope it all goes well.
i hope everyone else is doing ok, we are all nearly at the end of this part of the journey, it's been Tough but we've done it.
keep well lovely ladies love Tbird xxx
Hi Tbird. I had to have a liver scan too as my levels were high and it came back absolutely fine. As I'm on the trial and had Carboplatin every 3 weeks aswell as Paclitaxol every week for 12 weeks, it seems it was that particular drug that was affecting my levels. I've finished on those drugs now and had my 1st EC of 3 today. Had a bit of a meltdown on the trial nurse this morning 🙈 I think it was the build up to the EC as I've been quite anxious about it and possible side effects. Apart from a fuzzy head and being tired I'm not feeling too bad. Fingers crossed I'll be okay but not holding out much hope after reading all your comments when you started out on EC 🙁 It effects everyone differently so we'll see. Really looking forward to having a 3 week break tho instead of weekly trips (twice a week) to the hospital a for the last 12 weeks!! Sounds like this 'T' you're on is the devil for most if you's. Take care everyone and just think, were nearly there. We've got this 😘💪 xx
How is everyone getting on? I’m guessing some of you have had the second Docetaxel by now? I have mine tomorrow, provided my bloods are okay.
It will be the penultimate chemo treatment for me, and it’s strange to say, but while I can’t wait to finish chemo, I’m kind of nervous about finishing this phase of treatment and moving on to the next.
I had my first appointment with the radiotherapy consultant yesterday, it looks like I’m going to have 15 sessions of radiotherapy, starting 3-4 weeks after my final chemo. My oncologist also discussed hormone therapy - I’ll also be starting this after chemo - with ovarian ablation (via monthly injections), lanastrazole, and biphosphonates.
I’m struggling right now with the fear of the unknown, as I’m not only dreading tomorrow’s Docetaxel, which will likely be a full dose after the reduced dose of last time, so who knows how I’ll get on, I’m also dreading to see what the side effects will be with the hormone treatments and the radiotherapy. 😰
Sorry for the mini-rant, I’m just feeling down in the dumps and fed up of all this cancer/hospital stuff.
Thankyou for your reply, it's reassuring to know other people have had their chemo drugs reduced also.
I had one drug stopped and 80% given in no2 and no3 of Fec. Today the oncologist said I only had 80% of T on my first T (nobody told me this until today) and now as I said in my last post totally having Droctaxel stopped and having 80% of the two targeted treatments.
I am trying not to worry I keep telling myself these drugs are so expensive that if the oncologist didn't think the reduced drugs would work just as well as the normal dose then they wouldn't give you them would they.
tomorrow will be my penultimate chemo, my last one should be 22nd Febuary so please keep your fingers crossed for me.
Keep strong Love Tbird xx
Had a meeting with the oncologist this morning ahead of my 5th treatment tomorrow, not sure how to take the news. He said my liver levels were very high so they want to do a liver scan to see if any damage has been done. They are also stopping Doctaxel in my chemo tomorrow because of my liver and just giving me the two targeted treatments Perjeta and Herceptin. For my final chemo in February they will reintroduce Doctaxel if my liver has improved.
I am trying to be positive and think at least I can get a break form Doctaxel because I still feel so weak and tired, but then I have a little nagging voice saying will the treatment still be a effective if you can't have the full dose.
I havent had had surgery yet but will be having it after the chemo.
Have ve any of you ladies out there have there chemo cut short or cut down.
love Tbird xxx
I had my first T just over a week ago after 3 EC. I found EC very managable after the "hangover" feeling passed after about a week. With T I've not had that hangover feeling and I've also not had any nausea. I've basically felt like "me" since the T and less like an ill zombie.
For me the aches and pains have been managable with paracetamol. I started taking it the day of the T and then regualary for 4 days after. I stopped taking it because I got an upset stomach which I know I get from taking too many paracetamol. To be fair I might have managed without taking it for so long but didn't want to risk it.
For me the worse thing has been oral thrush. Am currently waiting for my GP to sort out a prescription for antibiotics. I've also currently got a numb top lip which I'm hoping is linked to the thrush.
I've also had new side effects such as tingling in my palms which come and go. Oh and hot flushes, they've been a fun new development. Had some stomach cramps and a day of going to the toilet a lot but I don't know if that was the T or the paracetamol.
I'm defineitely more tired this time round, but that might be the cumulative effect of it all as well.
Feeling a little better today, ten days in (at last!) managed to stay off any pain relief for over 24 hours now, so feel like I'm winning.
Liloc, really sorry to have worried you with all the T talk. I can only echo what Tbird says and some lucky ladies are gliding through it, and the fact that so far we are all suffering means the odds for you not to do so are higher I believe I have been feeling really awful since my third and last FEC, never really got over it. I'm quite annoyed with myself as I am fairly fit, non drinking non smoking low BMI and no other health issues, so honestly thought this would be a walk in the park, what a shock it was to discover my body really hates chemo! I'm now also bored of saying I feel s**t!
Jencat, thank you for popping on here to share your experiences, really appreciate it, I've seen your informative posts on other threads, and echo the thanks from Dikat.
Tigerlilli, ahh yes, the complete lack of appetite and no sleep for a week, sounds familiar. I hope the bleeding is nothing sinister, but if it helps at all I've had a bleeding mouth (lightly when brushing) and a fully blocked nose each morning on T which turns out to be blood. I think T might weaken blood vessels and hope this is what has happened to you?
Kateday, really sorry to hear about the mega periods, I had a hysterectomy years ago so none of that here, but, have you thought about cloth sanitary protection? Before I had my hysterectomy I researched them and it appears that, just like disposable nappies normal sanitary products can give you nappy rash, ladies who use cloth pads on lighter days don't have the same issues.
Lou43, I have heard about the amazing goody bags on those courses, please let us know how you get on. There are courses near me but it's really not my thing, I almost never wear makeup or do anything to my hair. I have surprised myself by discovering a 30 year old eyebrow kit in my makeup box and managing to thicken my eyebrows out with the special powder and brush. They look really natural. My lashes have all gone and my eyebrows are half gone now, so I'm nearly a naked mole rat!
Oncology appt tomorrow, not looking forward to it, however, I can see the light at the end of my chemo tunnel and I have my last lot at the very end of February, at present it's the only thing keeping me going.
We can do this ladies xx
so sorry if we have made you dread T, not everyone gets the side effects as bad as others. I have been reading other threads on here and some people have hardly any side effects especially people that seemed to have suffered on EC, so hopefully Liloc you will one of these.
We all need to rant and moan I feel as if it's all I do at the moment, nobody understands what we are going through except others on here.
Stay strong love Tbird xxx
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