I’ve had breathlessness all the way through since first fec. As I’ve been in hospital with neutropenic sepsis a couple of times I’ve had checks and X-rays but nothing shows up. I mention it at every consult but they only seem to worry if it gets worse. Worth going to see your GP and getting it checked out or mention it to your chemo team. Hope you are surviving the SEs!
Hi - I’m a very latecomer to this thread. Diagnosed with TNBC right breast 7 mm but shot to my axillary nodes with 6/26 affected. I’m over half way through FEC-T having had my first Docetaxol 2 weeks ago, next one next Wednesday. Managed fairly well with FEC but the first T had very different SE and only just started coming round on Saturday. I’m still suffering from what I describe chest tightness/discomfort and increased breathlessness on the slightest effort and just wondering if anyone else has had the same? You start worrying and fearing the worst in the middle of the night..
Afternoon ladies - good to hear we are having some positive things hopefully outweighing some of the rough stuff.
Bibi - my nails are ok,I have clear nail varnish to stop them flaking on the tips and so that I can see what is going on.My finger tips and nail beds just feel tender - I try not to put stress on them.
I am day 8 post Tax number 2 - I am getting the bowel symptoms like last time but popping lots of Buscopan and Wind settlers to try and ease it.I assume it is where the lining comes away and doesn' like the foods I am feeding it😞
Thought I was ok yesterday - ate a few veggies ( cooked) and s little cheese but have suffered for it overnight and this morning☹
Back to the chicken and rice - doesn't do much for the taste buds. Tongue is still slightly white and a couple of ulcers.Sucking on ice lollies.
You have been very positive 're the extra cycle Bibi - like me you have been probably counting the days. Just want this bit done.However like you I would respect whatever the oncologist says is in our best interest' .
I have my onc appt mon ( earlier as my last chemo falls around the bank holiday again) - we'll ee.
Again like you Bibi I have a week in southern Spain arranged 1st week in Aug as my daughter is chief bridesmaid to her best friend out there.We are hoping my mastectomy will fall early July so that I will be able to travel. Then back for the rads!! Want the chemo bit out of the way as hoping to cope better with the surgery and rads - hey and maybe back to work at some point!! Have forgotten what work is 😀
Hope you northern ladies are enjoying the sunshine up there today if you can - it is cloudy and windy here in the south.xxx
Great to hear you had a good weekend Wee Burd and well done for doing the walk.
ive been lucky with my nails and they are still OK and not sore on the Docetaxol- hate the black nail varnish though - don’t know how people can be bothered with nail varnish - does my head in having to maintain it. Using some nice cuticle and nail cream to give them a boost.
Welcome to the group Daisy - isn’t it weird how we all react differently to the same drugs? I have found the T cycle doesn’t affect me as much as the FEC did.Hope you have picked up after last cycle now.
I have had oncologist appointment this morning , was supposed to have last chemo this Thursday but he is so pleased with the way tumour has responded to the 2 cycles of T + herceptin he has decided an extra round would be the best way forward to give me the best chance of making sure the little bugger is dealt with forever. So feeling a bit weird as was expecting this week to be last and was making plans for a holiday before surgery- so they are on hold again - but am ok with the extra chemo if it gives me a better fighting chance. I I’ll just have to enjoy my garden instead- and wedding dress shopping to look forward to with my daughter.
Have a good week everyone - stay well x
Oh Wee Burd thats lovely to hear - so glad you had a good day with friends. A bit of normality is such a wonderful feeling ! xx
Yes..thank you for replying...my main worry is infection?
lets hope we can avoid itxx
I’m concerned Re nail beds..,have sore fingers...Chrissy are your fingers sore too?
i may get cellulitis if my nails fall out.
has anyone had nail problems?
welcome to the group . Sorry to hear you felt so bad on T I too have my 5th T on Tuesday so I hope I’m not so bad.The first one wasn’t too bad except terrible back ache and tiredness. we have a wedding to go to at day 12 . My finger nails are starting to lift and are tender now . Has anyone else this problem ?
hope everyone else gets on ok and is feeling a bit more normal
Hi everyone, sorry to have arrived so late to to the party, but I've been reading the thread and wish I'd found you all sooner. I was diagnosed in December, grade 3 invasive ductal, and operated on (lumpectomy and sentinal node) two day after Christmas. I too was a February starter, FECT. I've cold capped and kept all of my hair so far, although it could still go after this (5th) T and another one still to go. I've certainly found this T phase harder, I bounced back from the FEC and the first T, and apart from the actual chemo day (Thursday) and the following day, I was back at work the following week. Not this time though, it absolutely floored me. Practically spent the whole week in bed, not sick or feverish or anything like that, just exhausted.
Also going through a divorce and the man I left him for turns out to be a bit of a dickhead, so just dumped him too. In for a penny...
Anyway ladies, just thought I'd introduce myself. And we're almost there. killer drugs wise. I've got radio next, but somehow that feels less scary.
have had first T and turning the corner except half tooth fell out so got to have filling Monday if I’m not neutropenic. ( luckily I found out to get checked as dentist never said , what a terrible thought that could have been .
moijan - hope your leg pains get better soon.
weeburd- don’t buy your scripts have you got medical exemptions card . I was on lansoperazole and gaviscon but didn’t help towards end of FEC I’m now on omperazole and it’s worked brilliant so go to your GP Or ring them like I did and they organised over the phone (telephone consultation- you won’t pick up bugs then )
jude51 I totally understand you with back ache . I have a repeat bone scan on 21st may due to lumbar changes I was told I’m hoping that it’s due to the op or the Gcfs injections I heard can cause them and I hope that it’s not bone cancer .
Bibi - I wish we had a holiday home oh I so need a break and the family but eldest daughter starts GCSES so not good time to go away and Youngest daughter is 12 and stroppy ! Ahhhhh !
Green damsel thankyou for the tip on coconut water will add to my tesco shop .
i know it’s not major but has anyone had fingernail changes I had ridges already but the white nail bit is going down the beds so not sure if lifting from beds . I did paint gothic colour but chipping so took it off to discover what was underneath.
2nd T (5th cycle ) due Tuesday good luck everyone talk about wishing my time away . Is anyone going for radio after ?
Feeling positive! Had scan and the little bugger has shrunk!
Was feeling really nervous going in as last times hadn’t shown any change - but thanks to 2 rounds of T and Trastuzumab and Pertuzumab it looks like it is responding. See my oncologist Tuesday and hopefully last chemo next Thursday 🤞😊
Lovely to hear you have had a better time on your second T Bibi. Had mine this morning - enjoying the steroid high currently although taste buds already starting to shut down. Going to our local Haven tomorrow morning if well enough to get some advice hopefully re my previous gastric nightmare.Have got Lansoprazole, Buscopan,peppermint capsules all lined up and will do my best to avoid Brufen 🤞
Had my ultra sound yesterday but waited an hour in our packed breast clinic with loads of people coughing and spluterring- grrr! Have got this far without picking up an infection- don't want one now. Bibi hope your sneezing this settled!
Hoping everyone is doing ok xxx
Hi all - hope all the problems are getting sorted for you - Wee Burd I suffered terribly with acid reflux on first FEC and am on Omeprazole- not a hint of it since - can recommend - can buy a version of it from high street chemists called Nexium.
I have been feeling really well on this second round of T and have been away for a few days in our Motorhome- it was bliss, cycling, walking, birdwatching, fresh air and general chilling - feel very refreshed and ready to tackle last cycle next week ! Scan tomorrow to check on progress and feeling hopeful there has been shrinkage. Have come back sneezing though and am hoping it’s not going to develop into a cold.
There has been a lot of discussion about exercise and cancer in the news the last few days - https://www.theguardian.com/society/2018/may/07/cancer-if-exercise-was-a-pill-it-would-be-prescribed...
What do you think?
I have tried to keep active as much as I can and don’t expect to be wrapped in cotton wool but there have been days when I have felt so sick or fatigued I couldn’t have managed any exercise. I’m sure keeping active is good for the soul as well as the body but it would be awful if people were made to feel guilty if they weren’t exercising when feeling really ill.
stay well everyone xxx
Hi Wee Burd,
Sorry that the ‘T’ has been such a low but it sounds as if you are coming out the other side of it.
Have you tried coconut water (unsweetened variety) to help with the acid reflux? I found it to be one of the drinks which I didn’t loose the taste for and it seems to calm any grumbling tummy as well. No idea if there’s any logic or science to it but the chemo nurses were enthusiastic about it as well.
It can be a bit pricey but if you keep an eye out for 2for1 deals in supermarkets it’s a bit gentler on the purse.
Hope you’re feeling better, the end is on the horizon so hang on in there.
thanks so much for your good wishes and supportive comments - it means so much
After all my recent misery I'm pleased to report that my oncology pharmacist was right - I did feel absolutely awful - pretty much at rock bottom - but it is passing and I am beginning to feel much more human again.
I'm finding it more difficult now to find a drink that it enjoyable and refreshing - now feeloing that I am suffering a bit from acid reflux: any tips from the other reflux sufferers on how to keep this to a minimum? At the moment I'm just taking Tesco brand antacid tablets and not keen to have to move on to anything too much stronger than that if I can avoid it.
I actually recovered enough on Sunday to go along to my neighbours' for a barbecue which was lovely in the sunshine, even though I couldn't eat much and alcohol was definitely off the menu! Yesterday was really nice too and I managed a bit of weeding, although I paid for that this morning with a really sore back. Hoping the upward trend continues, as I'm doing the Race for Life on Sunday with my pals, in memory of our friend who died of lung cancer (never a smoker) last November, and I need to be able to walk 5 km by then.
In the meantime I am not sure how to feel about the fact that my husband seems to be enjoying giving me my daily injections! Maybe he's just glad it's the only time I ever seem to be quiet!!
Hugs to everyone going through their next round this week xx
What glorious weather - hopefully some of you have been able to enjoy some of it.
Wee Burd - hope you are feeling a little improved today - sounds like its been pretty rough. Good on you for keeping the sense of humour !!
Chrissy - Hope you are feeling a little better and that no other catastrophes have occured - now is not the time for all this extra stress. Drinks can be a nightmare - i just force myself to drink whatever...not always pleasant especially water but def feel better for getting it down. I've had a mastectomy but no reconstruction so cant help there - is it still painful ?
Macneech - good luck for wed...almost there ! As for lymph node removal i had 17 removed, 4 of which were positive. I'm guessing they will remove all to ensure nothing left behind.
Miss Green - so pleased you got your results and positive ones at that...one less thing to worry about.
Well im day 4 after 2nd dose of weekly Paclitaxel and feel a bit guilty for saying that all is good. I forgot to take the first dose of Ondansetron afterwards so didnt bother at all - only 2 days. So good not to have any tablets or injections - makes life seem a bit more normal. I suppose my main issue is the night sweats but if thats all i have to put up with at present im ok with that. Nose has been bleeding a little when blowing it but platelets fine so not concerned. Haven't notice any eye problems but I have an eye check every year as mum has glaucoma so will mention it when i'm next there.
Big hugs to all - we're getting there ! xxx
Oh Wee Burd- sorry to hear you have been feeling so rough.Sounds like you may have had an infection if you were shivers? Having rigous?? Was your temperature alright? I am thinking that those of us that get an inflamed bowel are at risk of an infection called C - difficile - if your diarrhoea doesn' settle i would ring for some advice .😗
I have had more general muscle aches/ joint aches come on despite being at the end of the cycle - bit weird.
Wonder whether to take loratidine again - 😞
Hi ladies, yes, I’m also suffering a bit..Saturday was day three....and my legs again have tendency to swell, and my eyes are pretty sore. I even find that putting things on my head is uncomfortable...but I’ve now had 12 Paclitaxel in 4 cycles, and I’m finding it accumulative.
i think taxol and taxotere seem to have similar side effects...but I recall during my primary...I coped better.
the heat is also affecting me......I’m very envious of everyone who can just go out in the hot sun and also maybe even get away on holiday?
hope things get better for all of usxx
Wee Burd, sending you a hug, your SE's sound awful. I didn't have the same symptoms as you, (I did have the sweating at night, but I think that was mostly whilst I was on FEC) it seems to affect people in different ways. I had really painful legs and feet, which was definitely worse on my first round of T, so hopefully it's as Macneech says and the first one is our bodies adjusting to a new drug. Hope you feel much better soon x
Thank you Jencat,I am hoping next T will be easier.I had awful gastric issues last time.Although more bowels than stomach I have carried on with daily lanzoprasole and have Buscopan and Wind preparations at the ready. I have heard that 4th chemo of Fec T is sometimes the worst as accumalative effect of Fec going into a new drug T.Fingers crossed for chemo 5 😕
Hope everyone is ok who had chemo this week.xx
Macneech, I'm from the Oct thread. I found my 2nd T much easier than the first one. Also, I was advised it's better not to have a wig that's not too long as it can get straggly xx
Good news Miss Green - it seems to be scan time for a lot of us.I have an ultra sound on Tues to review things .Thank you for advice 're eyes Moijan.Mine seem to turn the taps on day 14 onwards for Fec and first T and I have blurry vision/tired eyes most of the way through( I call it the zombie effect).
Second T for me weds - hoping for less side effects.
Went to have my short wig shaped today - normally used to long hair but worried my shoulder lenth wig will get straggly/ Barbie effect.Still not sure about short hair - need some adjustment time. Hairdresser said she thought I had new growth!!😀
Bit scared that on Breast ca Facebook page some ladies have commented that their hair has come back varying shades from white to grey before their original colour eventually grows through! I suppose we should grateful for hair coming back at all!
Hopefully everyone is getting some enjoyment from the nice weather xx
I should have clarified re doxetaxol, in 2001 it was a fairly new drug and the doses were much higher than they are now, i was offered it as an extra because I was high risk with so many lymph nodes and lack of a clear margin....I have noticed that they do give it differently nowadays, a lower dose, also Paclitaxel..is given at a lower dose.
I already had varying high eye pressures, before I was diagnosed with bc....the blind spot appeared some time after...can’t recall when, but, it is just on the borders of my normal visual field......and I kept telling the eye unit about it, but the field tests they did were not wide Enough! Some years later, Moorfields took over this eye unit, did a wider scan....then. I got a phone call saying I needed an emergency brain scan! I had a brain mri, nothing was found and I guess they had been worried about a missed tumour! However, we suspect it was the Docetaxel.
the nurses in my chemo unit mentioned a few weeks ago, that Paclitaxel does change your prescription, so not to get new glasses till it’s finished. Because I have been getting sore blurred eyes, I so far, have booked into Specsavera twice for an eye health check......and today, they told me that my pressures are a little high, but that my vision hasn’t changed since,my last eye check which was a great comfort to me and I will have as many as I need for reassurance —-if my eyes keep giving me trouble.
but that’s just me...I’m older than most of you and the drugs seem to affect me more than they did in 2001.
And we have glaucoma in my family.
hope that helps put things into perspective. Oh, the optician today mentioned that Tamoxifen can change your prescription.....
Woo! That’s great news Miss Green - always good to know the chemicals are doing something after all we go through with them. I have an ultrasound on Thursday no am hoping for some good news about shrinkage - last one showed it was stable but not changed , nodes descreased. So 🤞 -trying not to think about it and enjoying the nice weather.
My eyes were watery on last cycle of Docetaxol but have not been to watery this time. Sometimes they just seem a bit more blurry than normal -hadn’t realised it was going to affect my actual sight Mojan, will need to get sight test after all finished .
I njoy the warmth everyone and take care if out in sun 🌞😎👩🌾⛱
Hi wee burd
i sympathise re the toilet related thingy...was feeling so bloated yesterday, I added four tinned prunes to my bowl of mango and it seemed to work like a charm.....and it makes me feel better.
my main probs on Paclitaxel are fluid retention, my legs swell up a lot so now wearing thromboembolism stockings to combat that..had a dvt Doppler session at the hospital..no dvt thank goodness.
my real worry is my eyes, by the end of the day they feel either dry or raised pressure...am having a eye health check at 2pm as my Docetaxel treatment in 2001 caused me to lose a bit of peripheral vision...and Paclitaxel can cause glaucoma, so am off to get them checked as have always had high pressures on occasion.
do any of you have eye symptoms? I was reading the 2010 threads and those ladies had a lot of symptoms at that time?
Wee Burd your image of a rocket going off made me laugh out loud 😂 but know what you mean!
My itch is in same place - thank goodness for the Aveeno - Miss Green I have some of the udderley cream - was using it but didn’t help the itch, but now hands are dry so maybe Ill go back to that for my hands.
Chrissy how awful having a break in - it’s the kind of thing that would just set me off on a bad day. On Monday I was in a real funk as I didn’t know what to do with myself- not really sick, not really well, tired, didn’t want to read/knit/ watch tv / have visitors- the weather was rubbish , thankfully Tuesday the sun came out and I felt better- but it’s hard work at times.
Drinks - bleuh- when the taste is bad there is nothing that seems to help - flavoured water, tonic water, ice pops, chewing gum - try them all but it’s hard to get rid of that taste. Herbal teas I do like - ginger, liquorice are my favourite.
Macneech I’m having surgery after chemo but no reconstruction planned yet. Got a second ultrasound scan next week to check on progress and decide on surgery dates.
For the first time in ages I really craved salad yesterday - maybe the cake addiction will go, I’ll eat salad and the weight will go back to normal,🤞Our Motorhome came out yesterday - am feeling good , so hoping we will have a couple of nights away - v excited at the prospect.
Staybwell everyone xxxx
Hi chrissy68 - so sorry to hear about your garage.none of us need anymore bad luck or bad things happen at this time.😔
As for drinks - I struggled with this one too.with FEC I drank cranberry juice (partly to try and avoid urinary infections) but I think my taste has been worse with Docetaxol and horrible for longer- day 15 and things just beginning to taste a bit better.I have not had so much of the cranberry post Docetaxol as had had awful colic/gripes and wind - thought it might be too acidic. So ended up with weak fruit tea - could taste this a litle!
As for the aches and your poor tooth - I found that everything felt tender(I had generalised tooth ache for a couple of days).The usual exhaustion.
Hope you begin to feel better soon - I had that lovely eureka moment last Sat when I knew I felt better - watery/ muzzy eyes - still windy but I can cope with that.Just can't believe that next weds I am due to go again! I should be grateful- number 5 out of 6 😀.
I haven't had my surgery yet but need to start thinking about it soon.I am due to have mastectomy with axillary clearance.(not sure if this means all my lymph nodes are going as how will they know which nodes have been cancerous if the chemo has hopefully zapped them - any thoughts???).I had 4+ enlarged on CT but only 1 biopsied positive.Also due to have temporary implant (overnight stay) rather than Diep as I assume because my boob is small - 34B/C.Any of you lovely ladies had or going to have this?.? Xxx
Thank you Macneech - oncology appointment went well today - the pharmacologist was very sympathetic. but not much to be said other than bloods are ok, we're fine to go ahead tomorrow and the side effects will be different next time! It's probably been something working away and because my immune system doesn't get the chance to recover fully each time I've really been struggling to fight something off. She has warned me that potentially I could feel like I've been hit by the flu by Friday/Saturday but that it should only last a couple of days and to focus on the fact that it WILL get get better.
I have started on the steroids today, so my appetite has come back from the weekend low. We're having a little treat tonight of a nice and easy meal for 2 from Tesco, with pudding, so should hopefully have a relaxed night tonight. I have about 4 1/2 hours' worth of Archers Omnibus and podcasts downloaded to my phone, a book to read and a colouring book and pencils ready to pack in my bag, as I will have to be monitored for 6 hours after this first dose of herceptin, but if I am like Jude and get Piriton before the treatment, I think I may well also end up knocked for 6!
I am still using the cold cap and my hair is holding out reasonably well - just have one really much thinner patch on one side where I think it is rubbing off on the pillowcase. The oncologist suggested either wearing my turban to sleep (head gets a bit too hot) or a satin pillowcase, so I've ordered a couple to see if that helps. I tried wearing the wig for my day out for the girls, and it looked really good, however I didn't feel that comfortable, so have just decided to embrace the baldness. I wear a hat outside - now that the sun is actually coming out a bit, I don't want to get sunburn on my scalp! The air is quite clear here and even when it feels like you couldn't get burnt, it's easy to be caught out. I just wish it wasn't quite so grey! Wishing that when it starts growing again, all those renewed cells will think they're teenagers and it will come in a lovely glossy brown again!
I too have found Aveeno cream is a real help for the itchy skin - at the moment the worst area is just under my bra line and below my cleavage - it's where the clamps and ends of my Hickman line sit and as I am wearing either a bra or a crop top day and night to hold everything steady the skin is getting no respite. I don't even feel as if it gets showered properly as I have to keep the line out the water as much as possible. However, the Aveeno has been really soothing and helpful.
Pharmacologist has told me to expect joint/bone pains and just to use paracetamol and brufen to the max for it - but I will bear in mind the potential tummy troubles. I have been avoiding milky things recently because of feeling seedy, and will probably continue to avoid them - other than delicious raspberry yoghurt from The Collective - highly recommended very tasty fresh live yoghurt if you have it available locally, feels like a luxury treat (and is quite dear for yoghurt!). I'm hoping the steroids will help with being able to eat enough to counteract the brufen. Some days I feel like a walking test tube full of all these chemicals - frightened that if someone shakes me there will be an explosion from my poor tender backside and I'll take off like a rocket - lol ! Leaving you with a picture of the Wee Burd's Wee Baldy Bit! See you on the other side ladies xxx
Oh Wee Burd- sounds like you might have had a grumbling infection.Good to have been checked out but shame it spoilt your days away.Good luck with your chemo tomorrow.
I saw my onc yesterday ( registrar) and hoped she might suggest best support for my gut symptoms.She wasn't very helpful other than offering me Buscopan on prescription.She said a dietiian referral wouldn't help!
-She said Brufen wouldn't aggravate it - now not sure how to prevent/ deal with it 😔
I am having my good week although still having a few gripes/ headaches.Able to get out and about which keeps me sane. Can't believe only 7 days until second T ( cycle 5). Touch wood no bad effects on my nails yet!! Can see slight red lines ( must have been from the Fec - decided not to use dark nail varnish,not yet been exposed to many uv rays!)😎
Looks like the weather is supposed to improve - ready for my next cycle when I need to be in bed!!
Need to stay positive - those having 6 cycles we are nearly there!!!
Hope you get some answers soon Miss Green xx
Bibi - good to hear you are doing ok.
I get quite frustrated with food/drink as i think i want something especially if i enjoyed it very recently, then when i have it it either tastes disgusting (ususally very salty) or has me running to the loo ! Must admit yoghurt seems to be doing the latter the last 48 hrs which is a shame as its somethng i enjoy with fruit and granola for breakfast...or any time of the day for that matter.