Hi ladies, seems a lot of you are going to be joining me on Paclitaxel...just wanted to share this site...has really helpful lists of what we shouldn’tt eat on Taxol , eg some things worsen side effects.,... I hope it’s useful. For you just to have a wee look.
i have had turmericand want to restart, but it gave me reflux....so am investigating it.
talk to you soon.
Evening all ,Hi and Welcome Green Damsel and ElsieR,
seems round 2 of FEC surprised a few of us - I was really low after it upto about day 10 and wasn’t expecting it as first one had gone so well. On day 5 of round 3 now, not as bad as last time, have monitored my fluid intake more closely and this seems to have helped. Did have the most awful mouth taste for the last 2 days but seems to have shifted now thank goodness. I find lemon and ginger tea with a ginger biscuit a good way to start the day. The thing I’m experiencing is a shakiness if I don’t eat regularly- at least that’s what seems to lift it - but I’m having to make sure I eat a small snack every couple of hours or I get the shakiness and lightheadedness.
Trying to keep active but find I haven’t got much stamina - keep trying though - although been a bit cold to venture out last few days.
Hope you get your vein sorted Chrissy - sounds like you could do with a PICC line if it’s giving you that much jip.
Looking forward to a few warmer days and planning some things for the garden.
Take care all xxx
Hi ladies - burst of activity on here today !
Bibi - good to hear you are taking it easy. Hope you continue to feel well.
Chrissy - I had a real low with cycle 1 & 2 on day 6-7. Put it down the end of the steroids so gradually reducing them this time to see if it makes any difference. Hope the support day is of use. I get a very salty taste and just try stronger flavours ot mask it. Pineapple juice has been ok and sometimes lemon barley. Baby bel cheese and mini cheddars going down well today but it may well change tomorrow ! I would def push for a PICC line, - surely anything to avoid an admission to hospital with infection ! I would love to know what their reasons are for not doing it - you deserve a good explanation when its so common elewhere to get them. I had no issues with asking for a portacath so dont understand it.
GreenDamsel & Elsie R - welcome to the group. I too am on 4 cycles of EC - just had 3rd last friday, then due for weekly Pacltaxel. Have you had any surgery yet ? I had a mastectomy and axillary node clearance in dec.
Wee Burd - cant believe how long this is taking, fingers crossed you get the line sorted and get going again.
Macneech - i too do wonder if having the F part causes the worst side effects. I have read that some hospitals dont use it now because of this. I was unusually unwell for the first 24 hrs with awful nausea and headaches and if thats what you and others are going through each time you have my utmost sympathy...it was horrible.
Big hugs to those having treatment this week and those recoevering xx
amazing the the difference a couple of hours makes, more or less back to normal and hair issue has been resolved thanks to local wig shop making the adjustments, all good to go to work tomorrow.
Round 2 certainly taught me a lesson to be prepared and pace yourself, I did think round 1 was a bit too easy but I wasn’t complaining. I can cope with having a few days out of the cycle feeling knackered and just a bit rubbish if it does the job. I have another round of EC then it’s on to weekly paclitaxel so will see what that brings.
Fingers crossed your second round is not as bad as you are expecting, just be kind to yourself and rest when you need to.
Chrissey. I had vein pain when I had fec, they recommended keeping it warm and plenty of fluids, try a hot water bottle wrapped in a towel. It doesnt stop the pain totally but did seem to help.
The taste buds thing is a pain, I cant really taste anything at the moment, but find ginger beer, pepsi with ginger and dilute lemon all helps with the crappy feeling in the mouth. I dont normally drink a lot of fizzy drinks but anything to be able to taste something.
MissGreen, I I would check with the nurses if your PICC line is still bleeding, I was told it could happen for a day or 2 but after that it shouldnt, maybe your bandage is pulling on it slightly. Did you not get a prescription for a plastic cover when you got a picc line fitted? I had bought one but then got one on prescription. I was scared to use it at first but now I can hae a bath or a shower with no issues,
Wee Burd, sorry to hear you are having more delays with your picc line, i cant believe how long you are having to wait, fingers crossed you get sorted on Wednesday.
Ive been reading your posts about parking, you are lucky if you get help with parking fees or get them free, my hospital charges everyone as the car parks are run by a private firm. I always end up putting extra on to make sure I dont get a ticket, It costs £1 an hour to park and if you go over by 5 minutes they are there and giving you a ticket,
Hope everyone is doing OK. Keep well
Thinking of you chrissy68 - think it must be the F in the Fec that seems to floor us.I was really bad from day 5 to 11 this time ( 2nd round).Didn't venture out as knew from 1st round that I would end up flat on the floor somewhere. For me it is difficult to describe - clammy, sickly,tummy gripes,hot feet,cardboard mouth- just horrible. Your indigestion might be exacerbated by the steroids and Brufen ( if you are taking it).l think some of the gastric symptoms are from where the lining of the gut/ mouth comes away.l took Lansoprazole this time round to help this.Feeling low and tearful just comes with all of it I think - hang on in there.Sending big hugs xx
P.s - watered down cranberry juice did it for me despite having herbal/ ginger tea bags- l couldn't face these.Salty foods - twiglets/strong cheddar. Go with what your flattened taste buds tell you.xxx
sorry about your arm...what drug was it? You do need to let them know really about the pain, as some drugs can upset the veins. Why not call the chemo unit, or your nurse specialist?
so sorry, can well understand how you must be feeling....but do call them as they may need to change drugs or the concentration of that drug etc.xxx
love to you
Oh and Chissy, keep your arm warm and drink loads, try the tea mentioned by another lady, but do call themxx
Hi GreenDamsel, I started EC on March 1st so I'm in the March group but no one else is having EC, and I just spotted your post. Ive got round 2 this Thursday. Like you I managed round 1 ok, but I am dreading round 2, because now I feel well again, I realise that I did have side effects but I just ignored them and got on with life as normal. I dont want to feel unwell again and certainly not worse! My hair is also falling out over the keyboard as I type. I thought Id got away with it with the cold cap, but that was wishful thinking!
First visit to the forum, I started EC on 21st Feb and just had second lot last week. What a difference 3 weeks make, the first was a breeze, no obvious side effects other than being a bit hyper from steroids. This time I am completely floored, no sickness etc just dizzy and weak which I admit is a bit of a pain in the proverbial as I had foolishly made plans. Also hair is now thinning quickly and the monk style bald spot is not a good look in the office so working from home until the wig can be altered to fit (it’s now too big and pouffy).
Hope the next round isn’t worse, although I suppose I’ll be a bit more prepared for it. Hope everyone else is doing well.
Good luck Miss Green, don’t know about the pic line, but as it’s in a vein, maybe that’s expected...hopefully someone can reassure you,.xx
i now have my port in....have been getting quite a bit of discomfort, but it’s easing off nowxx
Chrissy, sorry you’ve been told not to have any other therapies during chemo...I’ve found reiki really helpful for reducing side effects and getting off to sleep...I did the course a week before 1st chemo tho, so I tend to do it on myself...but am also having it from a reiki therapist at Macmillan.
I sometimes wonder if gps understand Reiki.....it’s very gentle, not hands on and rebalances the energy.
however, I wish you well Chrissie.xxxx
Afternoon all - feeling mostly back to normal again now (day 12 ,2nd FEC).Took a bit longer to get going again this time hope number 3 isn't worse.Have been told cycle 3-4 from fec to Docetaxol can sometimes be the roughest time for some (accumulation of the fec hitting the initial effect of the T)?? Not sure if this is good to know or again are we all affected differetly.
Bibi - like you I need to get through the chemo then on to a mastectomy/node clearance.l have been offered a temporary implant ( but BCN has suggested this may be damaged by radiotherapy).Think l will cross this bridge when I come to it. Still only just coming to terms with no hair.Been out in my wig a couple of times now but feels hot and itchy and adds to headaches and irritability with pressure on my head 😔
On a positive - got out with family last night to the cinema to watch Peter Rabbit - bit of light relief! Was a little concerned though as plenty of kids coughing!! Had a meal after - appetite currently back on 😃
Many of you had snow again?. We had had a couple of inches ( warmer here on the south coast).ok to model my bobble hats rather than wig in this weather but still looking for a soft cool hat that doesn't announce I am having chemo 😞.
Thinking of everyone- hoping all that needed have their lines in ( my picc line has been great) and I have mastered the art of having a bath and not getting it wet ( l prefer a bath anyway).Do my injections after - my hospital gives me 5 days worth starting from day 5.
Good luck to those getting through treatment this coming week xxx
Afternoon all - Day 3 of round 3 - feeling quite good but taking it steady not doing much, only things that can be done on sofa, reading, knitting and making frequent requests of hubby for drinks and food.
Jude hope you are OK -must be hard managing without your hubby - must be good to have him back this weekend.
Flora thanks for that info re surgery. I have to have mastectomy after this chemo - trying not to think about it at the moment - not so much the surgery but how I will feel after it 😕 . Reconstruction won’t be till next year but glad to have some info it.
Have a good weekend everyone x
That's v interesting Lola, many thanks for sharing. I would have liked to have known some more about surgery as that's waiting for me at the end of this. I don't know if I should go the diep or the implant way for one boob. Rather horrified that things got nasty with your chemo...
I'm day two after second ec chemo. First day I felt fine, today not...v confusing. Though yesterday made chicken soup which is sustaining me plus cream cheese and smoked salmon bagels. Seems Jewish food is the most appetizing to me right now.
Hair is falling off lots now. I feel ugly and fat and mis. UGH
Morning all !
Really impressed Flora with you planning to do that hike. I did quite a bit of cycling over the last few years for charity including a couple of overseas trips which were brilliant fun - ladies only so no pressure to be fast especially up the hills ! However i did soon realise that im not a great lover of cycling - it was more the challenge and spending time with friends that appealed. Saying that yesterday was lovely and sunny here and i thought a gentle ride might be an idea - just need to get the bike ready...seat not on and flat tyres ! I started back at the gym last week with my trainer and feel so much better for it - aching a bit but the mental buzz is great.
Interesting to hear about the injections - once for you Flora, 3 days for Chrissy and Bibi and i have a week !
Chrissy - that car parking amount is appalling, be interesting to see what their response is. Those impending financial issues is something you could do with out too. Luckily it's not an issue for me as i work at the hospital so although i have continued to pay £13 month out of my wages whilst being off, it just makes it easier. Oncology pts having treatment do get free parking as well. I also saw a notice yesterday in the breast clinic saying that if your appt has been delayed they will reduce the fee. My mum also has breast cancer amongst other health issues so i spend a fair bit of time at the hospital ! All in all they are pretty accomodating in Lincoln.
Bibi - sounds like you have all the drugs you need ! Hope all goes ok for today.
All ready for cycle 3 tomorrow. Also looking forward to hubby coming home in a couple of weeks - he works abroad on a 6 week rotation so havent seen him since just after cycle 1. Friends and family have been great but could just do with a big hug - my ever growing 13 yr old son tries his best but the lure of the PS is just to great sometimes !
Thinking of you all - take care xx
Evening ladies - really appreciating the support on here.Have been in a closed breast cancer Facebook site and have had to block the feeds as all too much.Its good to gain positive advice on here but to try and get some normality and non cancer related interactions I am finding so important.I like others here feel better for sharing the bad bits but also feel guilty and humble as I know there are others worse off.l have a 21 and 22 year old that are reasonably independent and a supportive husband.I have been able to shut myself away on the bad days and focus on myself.It must be so hard for those with young family.I am also fortunate that I have onsite parking (I work as a hospital nurse)- however I have prepaid out of my wages.Our hospital in Portsmouth just give a concession voucher for chemo day.
Amazed by all trying to work / flora with your exercising!
Hoping to regain some activity this coming week.
Thinking of you all xx
Thank you Fiona...port tomorrow am...and very apprehensive. Woke with sciatica and later, chest pain....all stress of course.
Thanks everyone for your support - it does help. Feeling a bit less tired after my quiet day but not 100% 😕
Went to have my bloods done - massive queue for car park - managed to get in and out before hubby had got into car park !😂😂 Saved using one of the parking allowances - how does parking work for you all?. We had to buy a pass for £10 - but it gives 20 visits which obviously saves loads of money - especially as each chemo week has 3 appointments.
Anti sickness meds for me are - Emend for 3 days, something on chemo day as a little sheet that melts in mouth plus some steroids, Ondosterone and Dexamethaseone on days 2-4 , Domperidone ( wish it was Dom Perignon) I can take anytime 3 times a day.
Injections for 7 days- try ibuprofen and antihistamine with Loratadine in them and Epsom salts baths for the aching bones.
Have a good evening xx
Ooh, a walk by the sea sounds wonderful. We're off for a long weekend in the caravan at The Lizard just before my next round, so I look forward to getting buffeted by the wind on the sea front there. It is so easy to over do things though. You get carried away with the thrill of feeling vaguely normal, until you realise you're not quite that strong yet! I've signed up to do a Macmillan Mighty Hike around the Wye Valley in August - 26 miles - but can't seriously start training until this is done. In the meantime I'm doing my usual 1-3 mile walks with the dog.
Hope Thursday appointments go well - Bibi next's round and Moijan's port. And your port next week, Wee Burd. Julie, I'm finding the day after treatment is still one of my 'great' days. I felt super energetic last time. But I then stiffen up and crash a bit on the day after that.
Re: GCSF/filgrastim injections, I hadn't realised lots of people have to have daily ones. 8 years ago and this time, I've been given Neulasta (last time) and Lonquex (this time) which are both just one injection. Last time I was only given them after my bloods didn't come back in time, but this time they've given them to me from the very start.
Has anyone else had any lower back/kidney pain? I had quite a bit of that yesterday, so am sticking to drinking just water with lemon to try and help it along. I'm now on Day 8 of this cycle so think it is the bit when everything starts breaking down a little bit, before it comes back again. I also get a few extra facial spots and more diarrhea at this point in the cycle.
Bibi - that 3rd week is a breath of fresh air but lulls you into a false sense of security. Just when you crave normality it can bring you down with a crash. As i've said before we are all different and we are all learning whats right for us so dont be too hard on yourself. As for having a moan if you cant on here where can you - moan away !! Take care and enjoy the rest xx
Evening everyone - I’m just sending everyone hugs as we all seem to be having a few niggkes and things to sort.
I’m due to have round 3 of my FEC on Thursday - have been away overnight visiting family - felt great but think I overdid it again today. Went for a longish walk by the sea - live so far from it that I was longing to feel the sea breeze - was a gorgeous day and really enjoyed it. Then went to an exhibition, but think I went to long without food or had just done too much as I felt really faint - almost hypo - and had to sit down and eat and drink. Took ages to shake it off - scared myself a bit - so tomorrow after giving my blood before chemo I intend to do nothing to make sure I can do round 3.
Im not looking forward to that feeling of nausea and having to be horizontal for a few days - now I know what’s coming it’s horrible.
Sorry this sounds like a moan - have been feeling quite upbeat but am really tired.
Stay well everyone and look after yourselves.
Evening all. Well was a bit daft today, had 2nd treatment yesterday, got up this morning and felt a bit tired but ok so decided to go to work, struggled with tiredness all day so may have a couple of days off, will wait and see tomorrow but not going to push myself, not worth it, dont win any medals.
Wee Burd, good news about the line, I know the delay is a pain but it will be fine after next week. I love Scotland, the Isle of Mull is my favourite place, its so peaceful and relaxing, cant wait to be able to go and again when all this is over with. Dont think I could drive all that was at the minute,
Chrissy68. tried my wigs on, they dont look right, I had a blonde one which i wore all the time last time, and a darker one, ive lost 3 stone since my last chemo and i think with the way my face has changed shape, its a lot thinner now, I am going to have to get a new one that suits me, disappointed as could do with out the expense but will try and be sensible and get one near the £90 voucher amount and not a dear one. just need to get round to making an appointnent now to go and get one.
Hope everyone else is well and coping OK.
Take care all xx
Wee Burd - Good to hear you've got a date to get things sorted. Enjoy the break. I have found the social side of all this so uplifting - great to catch up and spend time with friends ! xx
Chrissy - so good to hear you have got going again and also about the injections. Take care and hope the SE arent too bad over the next few days. xx
Moijan - good luck for thursday ! xx
Yes, weeburd that IS a scunner, if ever I saw one.......and I kind of thought you must be up there due to the wee burd name.
my port goes in on Thursday .....though the person I was hoping would put it in may not now, now That also. Feels a scunner because I have been working up to having this done for about 18 months and was hoping he would do it!
best of of luck to you tho, hoping you don’t have to wait too long xx
weeburd- so glad you having line next week keep
jude51- thanks for hydration advice. You are so lucky you’ve not had fatigue
miss green - hope you feeling well
kitty75 - I’m joining you on rattling with pills
macneech- hope you feel a little better soon x
moijan - I’ve asked for reiki waiting for gp to allow it been told not to have any other therapies during chemo .
Jujube - have you managed to get on with your wigs yet ?
cuddles79- hope you coping with hair loss
if I’ve forgotten anyone I hope you are coping well.
so yesterday I finally had my 2nd Fec after being neutropenic . They have prescribed ondansterone and cyclizine this time and finally Gcsf for 3 days ( I was told before that I couldn’t have it) . Yesterday I felt like chemo coma was in bed at 5pm TIL 8 this morning !,but I’ve had no sickness and touch wood nausea unlike the last time. I’m just tired and a little reflux and rattling with all the medication. Fingers crossed x
Good luck to everyone xx
Macneewh, I’m pretty sure that dehydration makes things worse...in fact my temp went up last time I was dehydrated, alsoa gp told me that there are always a couple of bugs in or near the bladder entrance and poor hydration can allow them to increase...makes sense to me. Hope you feel. Better soon
Hi Macneech - could the headaches be from the injections ? I didnt get the backache this time but more headaches - onc said quite possibly they are causing it...went off after they finished. Ive been getting sweats at night - must be the effect of chemo in lowering oestrogen. I try and not wrap myself up when i go to sleep and also might invest in one of those chillows (cool pilllow). I also need to drink at least 2 litres daily. Must admit i've not had the fatigue but i guess you just need to listen to your body on that one - fresh air when possible. Next cycle im having an extra couple of days of steroids at a reduced dose to try and make the side effects a little less miserable (usually day 6-7) Fingers crossed or it might just delay the inevitable...we shall see next week ! Not sure if thats any help but good luck xx
Weeburd - waiting sucks. Did you hear back from your BCN ? x
Miss Green - hope today went ok and the side effects arent so bad x
Just popping on to say hi ladies. I finished my chemo in October and I'm coming up to a year since diagnosis. Just wanted to let you know there is a light at the end of the tunnel. I've created a blog to share experience and advice so please take whatever you can from it. https://lifeafterlola.blogspot.co.uk/
Love and best wishes to you all. Xxx
Checking in - day 6 2nd Fec. Feeling really blergh- as last time round.Can do a little activity for about 10 mins then need to be flat out again 😣.waking with hot sweats and headaches - is this the dehydration from the immunity dip? Need to get on top of it as I know I will hopefully start feeling better for week 2-3.Grateful for any tips to get through though.Big hugs to everyone xx
Btw Cuddles, to get your photo on a post, you either have to upload it to your profile, or save it in your device’s photos, then click on the square black picture icon on the row above and insert it that way..... usually copy and paste doesn’t work XX
So sorry you are feeling downxx it’s very very unpredictable isn’t it? Weeburd,
‘’Hope you get your line in soon...I’m having mine on Thursday and very apprehensive, tho have had loads of support from others on the forum who all say it’s not that traumatic and that it was the best decision they ever made.....it’s partly the waiting isn’t it?
‘’Anyway fingers crossed for you. Can you get to an complementary therapist nearby? I had some reiki today...and am feeling much better after, just a thought...or even a short walk, coffee with friends?
lots of love weeburd, you have been so supportive to this groupxx