Hi All, had 2nd T yesterday and have been ok today will see what happens tomorrow, have been actively drinking much more water and hoping that the Tramadol keeps the aches and pains away and only going to take for first week as don't want to rely on them, will swap to ibuprofen.
Also did my first injection tonight and didn't feel a thing so well relieved! Hair 80% gone now but I'm hoping I keep some eye lashes, my best friend went through all this 4 years ago and she didn't lose them all so fingers crossed 🙂 night night all x
Reading some of youre experiences with FEC...i had 3 cycles of the same Yes i felt sick but wanted to eat ALL the time!, also...got slight discomfort on swallowing after days 3 to 4 , felt foggy/hungover for first 4/5 days, slight breathlessness but only with first lot and didnt have any more after that, ..just generally felt like early stages of pregnancy over all with slight fluid retention for few days and headache at times....by days 5/6 i was usually back to near normal. If had chemical phlebitis..pain in veins , i used ibuprofen gel to area which really eased it.
Drink plenty, eat what you fancy, look after your mouth...salt water or sodium bicarbonate mouth washes after meals help and pineapple, rest when you feel like you need to.
Thanks for your replies re my family issues....thankfully after spending time over these past few days together and talking through things, it seems the penny has dropped and hopefully things will be much easier. I now physically feel better too.....maybe due to this also. .2nd T on Tuesday but 1st Herceptin on Monday......joy. Going for a night away on Friday, footy Saturday and 'family' curry night also planned....few vinos too hopefully. Also got my op date this week...for October, there is light at the end of this tunnel
Hope all you who have had treatmeng this week are doing reasonably well and arent suffering from SEs too much, and stay strong
Take it easy everyone,
I too had a craving for savoury food and pork pies did it for me!! Have had to try to control it abit but they taste so good and not an unpleasant side effect for a change!!
Finally joined you for real on Saturday 1/8 for first of 6 cycles of FEC 75. So far I've been tired & dizzy but had no nausea or sickness at all, for which I am extremely grateful. Metoclopramide made me very twitchy, so I took cyclizine instead, which the oncologist had thoughtfully prescribed in case the meto was a problem.
I have also been craving savoury foods, though I normally have a very sweet tooth. Really fancy pork pie pastry right now (don't like the meat!) & am a bit worried I will pile on more excess weight.
Anyhow, it's a relief to be on the other side of the first treatment.
Best wishes & hugs to those of you who are really struggling.
Josie11 - Good luck with your next chemo session today.
JKY03- hope things are improving at home. You have done so well with what sounds little support and probably battled on so as not to disturb the stability of the house. You are No1 so look after yourself. Treat yourself each week to a massage, facial or pedicure and you so deserve a big hug and pat on the back for getting this far. Some Hospitals give complimentary sessions so it is worth checking out your local Hospital. The end is in sight so just countdown to the final chemo day and plan yourself a treat at the end.
I have noticed breathlessness lying down at night for 2-3 days after FEC; it must be another SE. Eight days later my hand and wrist is still swollen from the three attempts and getting an injection site. I am wondering if the chemicals went into the tissue and not the vein for a short while hence the swelling and soreness. Just hope this does not happen again and they can find a good vein for next time as they can only attempt one arm. I am also hoping to have medication tweaked as still getting the sickness but this time wasn't sick - thanks to the Emend. Is anybody hungry all the time? In an afternoon, I ate two cakes and a family sized bag of Kettle crisps (sea salt and balsamic vingegar - yum). Next day sore mouth, not sure if it was the crisps or because the inside of my mouth has been peeling. Blame a SE 🙂 At least no weight gain so far so enjoying unlimited foods.
As a result of your positive posts on here, I have booked myself in for a Headstrong session on 14th August and a Look Good Feel Better session on 24th August so looking forward to both as this is making me in control and will give me confidence.
Enjoy the rest of the day. xx
Hi Joyce11 and Em 1986, thanks for your replies - it does sound good.
Hi Ann1976, thanks and good wishes for tomorrow too. I resorted to a hat last night in bed too 😊
Im having a quick breakfast so I can take the dog out before round 2 commences,
take care all, xx
Here's a link to the 'Look good feel better' website where you can find details of locations and dates of meetings:
Hope you manage to access one
Hi I have also been to a look good feel good session and it was great - never to old to learn something and it was a really good laugh - small group only 6 of us and as you say the freebies are fantastic. Enjoy.
Hi everyone ,
just wondering how everyone is?
I've been so lucky to have 2 good weeks and tomorrow is round 2.
Next job is to see how much hair comes off in the shower tonight - although I'm threatening the Hoover, Joyce11..... 😉. I can't believe how much hair can come out and still leave more.
I went for a wig fitting yesterday and they've ordered a couple to try - by the time they'd put a stocking and several wigs on and off, I needed to be swept for hair and was mortified by the mess I'd made. They offer a complimentary head shave and massage once you choose your wig so I think I'll take them up on that if I've any left by then 💇.
The nurse at the clinic said that eyebrows and eyelashes are usually another wee while till they come out so I might get to a Look Good, Feel Better class before they go. Has anybody been to one?
Wishing you all a good week, xxx
Hi All, blood test today haven't heard back so will be in for 2nd T tomorrow, also had a nice session with a retired Oncology nurse who now does massage and reflexology, as they were running late with blood tests I didn't have time for full session but did have a rather nice head and back massage, having this done every 3rd Monday before chemo.
I think I took my steroids too late today as I can't get to sleep!! 😞
Hi nico, thanks for the reply . I'm finding it really tough on erubilin , I can honestly say it's the hardest I've done and side effects horrendous. I have a have aches in bones and around the liver , tired all the time . I have never had to take pain killers but on this chemo I do..seeing onc Tom and will tell him everything., I have noticed having a bath helps. I wondered if anyone else on here was having the same problems.
Once again thanks for reply x
yeah went thru it all with everyone on diagnosis. Unfortunately as we all share the home i find it difficult to understand how they avoid me...but guess have to accept thats the way it is.
Now have to concentrate on me and getting thru next few cycles....just hope I can not let it affect us all too much in future, but i refuse to be made to feel guilty any more for having this crap disease.
Lets look forward to a good week before it all begins again.xx
Hi Jky, I have started with T so am hoping FEC will be easier later on. I did feel for you when you mentioned your families lack of support, unfortunately sometimes the people closest to us have the hardest time dealing with things.
I live with my two boys and I feel quite lucky as they are handling things well considering but even I get frustrated when things aren't done, I hate to keep on as I feel like I'm nagging. Did you all talk about your illness when diagnosed, it may be that they don't really understand how debilitating it can be. I was brutally honest with my family and said it was the worst I've ever felt in my life, previously I would always say I was fine and just get on with things, now I let people take over and relax. All my friends and family have said to call them if I need anything which is great but you can't call them at 2.30 in the morning when your at your lowest ebb!! At least your nearing the end now, stay positive and look after yourself x
Hi Gaynor, I'm due my second T on Tuesday and I did suffer from bloating but everything seemed to settle on day 11. I would mention it at your next session Friday if not any better as they may be able to prescribe something to ease it.
have had problems signing in recently..all seems resolved now..obs.
So day 12 post T1...fogs lifting though dont yet feel fully with it, still bloated after eating but tummys much better and the pains now only minimal in my back + ribs and breathless..seemed to go on forever with SEs. Think its because FEC×3 wasnt too bad on reflection....and now T is probably what I assumed chemo effects were...still knocked the stuffing out of me....but hopefully now can enjoy this week before T2 next Tuesday.
Had hard week emotionally too..combined with SEs...mainly due to my sisters' outburst out of the blue at me...cant seem to shake what she said after having complete fit when i was cleaning kitchen surfaces prior to making lunch (we all live in same house)."walking on eggshells around you", "i work full time and got better things to do on my days off than clean", "nothings good enough for you"....crap thing is ive had 4 cycles of chemo and not once has my mum or sister offered to help me with houseworkat all or taken me out for cuppa nor sat with me on my sofa confined days....literally avoiding me at all costs. Im hurt that they are discomforted by me. My hubby has spoken to her un beknown to me and yesterday she texted me to ask if i wanted to go out for coffee/shopping this week.
I dont...as think itll be along time till i can get over the way theyve treated me, but i will to try to ease things.
Sorry re the long post but just had to get it out there.
Hope all you ladies have had better week and have enjoyed the weekend.x
That's good Joyce! Keep thinking about chopping off the bits of hair I've got left.
had to go back to the dr toda, now have ringworm. Oh the joys of a weaken immune system! X
I too have had a good day - second day after second FEC and feeling fine. Finally got my wig which I think looks great so bring on the falling hair I am now in charge!!
Mazzi that sound likes the way forward.
actually had the best day today in ages. My aunt took me and my girls riding this morning, which they lived. Then had to empty the huge paddling pool this afternoon, which turned into huge watery fun.
going out to diner with my husband shortly, haven't seen him all week, so feeling happy today, which is lovely xxx
Hi, went to see my brother today to borrow clippers and he did it for me bless him so now have a number 4 all over, so much better and now wig fits comfortably, would definitely recommend! Hope everyone enjoying the sunshine today 🙂 x
Hi All, sorry to hear some of you are having a rough time, I'm due to start it all again Tuesday so trying to enjoy the rest of this week, saw consultant Wednesday and he asked me about my injections and I replied I haven't had any!!, No idea if this is a bad thing or not, he didn't seem that concerned just that it was in my notes to have them, will check with Oncology when I go for blood test Monday.
Hair started to fall Tuesday afternoon and has been coming out in handfuls since, may see if I can borrow some clippers as I wore my wig for the first time tonight and it kept slipping backwards as my hair is too soft underneath, thankfully only at friends house for dinner so just kept pulling it forward, much to everyone's amusement.
I know what you mean Manicmum about looking like a chemo patient, I found I'm more comfortable in the peaked headwear out and about and tend to stick to the scarves or padded headwear at home, I'm sure in time we will become more confident, also found aches and pains far worse when laying in bed. I'm hoping I will be able to deal with the next session better as I have stronger painkillers and I know that I will feel better after the first week. Take care everyone x
Thank you Josie and hopeful holly for your kind words xx and thank you for letting me vent, I hate talking to people about it as it makes me want to cry. I know at some point I'll have to let it all out, but, for now at least, I need to try and hold it all together.
I've had a busy day doing normal things today, so feeling better. Chest pain less apparent in the day time, gets me more in bed at night so even less sleep.
I ran ran a half marathon for Macmillan in March, I doubt I could run a mile right now! I had entered the ballot for the London marathon next yr. maybe I'll be lucky and get a place, although I might well have to defer a year (unless I walk most of it!)
I hope you are all doing well.
Keep well and happy
Hi Manicmum, I'm sorry you've had a rough couple of days, medically and emotionally. I sometimes think we expect too much of ourselves and try to protect our loved ones from how we're truly feeling but there are times when we have to let our family carry us.
It must be so difficult looking after children and going through this. Please try not to feel guilty about your girls, it's only temporary and on your good days you'll be out and about with them. I remember when my boys were young and I felt the constant pressure to keep them entertained but children are very good at keeping themselves occupied with the simplest of things, and there's nothing wrong with watching DVD's and having a cwtch (Welsh word for cuddle) on the sofa.
I completely understand about not wanting to look like a cancer patient. On my first visit to the Cancer Centre for treatment I told my husband I didn't want to join 'their club' - the other patients. My husband reminded me that I am not a cancer patient as my cancer is gone, I'm just having treatment to prevent it coming back and I'll still be beautiful without hair. I spoilt the moment by replying I don't know how because I wasn't beautiful with a full head of hair lol! We both burst out laughing and since then I've tried to not think about my hair too much and take each day as it comes. I've also bought new clothes, jewellery and make up and never leave the house without making sure I look, and as a consequence, feel good.
I'm sure you'll feel better about how you look when your mood lifts, and it will, I promise, it's just a blip. Be kind to yourself and let your family help you, it'll help them knowing they're helping you. Xx
Hi Manicmum, thinking of you and I hope that you are feeling better for having vented here. I've just taken a strip of my boys for playing up - more my tiredness than them really so feel so guilty. I phoned the BCC helpline last week and that really helped - the lady was a nurse but she also talked about how I was feeling. I don't know if you have a centre like Maggies near you - they have people to talk to and it is really good to be able to say how you are really feeling instead of putting on the face for family.
Take care and wishing you a good, pain free nights sleep, 🙅, xx
had a pants couple of days. Had a port put in on Thursday, then chemo Friday (2nd cycle). Had chest pains from Sunday night, so went to go on Monday morning. After three different sets of blood tests, an injection to thin my blood and a chest X-ray I was allowed to go home ( albeit 6 hrs later). Had to go back in Tuesday for a CTPA scan of my heart (yet another cannula as can't use my port apparently). Was put back in the ward I was on the day before and no one at all spoke to me for an hour and a half. Just terrible. Left sitting in a curtained off area by the toilet!
Eventually I spoke to someone and they chased up the results and I was allowed to go home as scan was clear. No idea what is causing the pain, it's keeping me awake at night, which is just miserable. My girls are bored and fed up of me not being well. So overall not a great start to the summer holidays!
hate the way I look with so little hair, my wig annoys me and when I wear I scarf I feel like I'm wearing a big sign saying cancer patient.
im trying so hard to be upbeat and positive as I don't want my mum or husband to worry anymore than they do all ready, but it does all really suck right now.
Hey ho, hopefully I'll have a better night tonight and feel happier tomorrow.
hope you're all doing well
Hi Joyce, I used cold cap on first chemo but found it so uncomfortable and lost about a third to 50% of my hair on day 18 that I too decided not to use it for my second chemo. I'm day 13 into my cycle and have not lost any more hair (well, not on my head!). I know it can start to fall out any day but I've tried to prepare as much as I can - had my hair cut short and have a great wig and funky scarves, have been practicing tying them - it's also good exercise for my arm (lymph node clearance) and I'm ready to go to a number 3 shave if needed. A friend of mine lost so much hair after her 1st cycle, she went for a number 3 and looks fabulous - she's given me the confidence to go for it if needed.
I'm sorry you had a bad experience with your first wig but I'm sure you'll feel better with a good wig that looks like you. Good luck tomorrow x
Hi Ros 53
Chemo went ok and did not go with cold cap. Seeing wig lady again tomorrow and will get remaining hair cut short and go with wig and scarves and "just get on with it". My first wig via the nhs was awful so have found another person and decided whatever I have to pay i don't mind as long as it is me when i am wearing it - so it s coming from Germany so awell travelled wig.
When I had some cording I found it really useful to stretch out my arm to the side at about shoulder level with my hand also stretched back - if that makes sense and although it was uncomfortable it really helped but I know we are all different might be worth a try. Good luck.
Hello Josie11 - thank you for the advice. I have now started massaging and continuing to stretch the cord and push through the stretch until it is no longer as painful. I was concerned about massaging as I was not sure if that would lead to lymphodema but I will try gentle massage. It feels as though I am going one step forward and two steps back with it. Had second chemo yesterday taking the Emend which has been really good as this time I have not been sick and only have slight nausea which I hope continues. Bit of advice re the Emend packet. Open the silver foil carefully as I "popped" mine out of the packet and it shot across the kitchen surface and little balls all over the floor. Fortunately the floor had been cleaned yesterday so I desperately tried salvaging as many as I could. Apparently someone else at the Hospital had an empty capsule too.
Hello Joyce11 - sorry to hear your first cold cap attempt has not been too successful. I wasn't sure about using it for a second time but as the time draws nearer to the next chemo you forget how bad it was. I think if you have 30% of your hair left I would probably continue without as it could be very painful as your scalp will have no protection. Have you chosen a wig yet? I have got one in preparation and just booked a Headstrong appointment to be prepared for what lies ahead. Hope your chemo went ahead today after the delay.
To all you folk out there who have used the cold cap - need some advice. I used it for my first chemo and have lost about 70% of hair and now it has stopped coming out. Concerned about next time as there is very little hair to protect my scalp from the cold and think it will be painful?? Also will more hair come out after the next chemo?? What are your experiences? I have cancelled my next cold cap but now don't know what to do!!
Thanks gals for the welcome.
Unfortunately Gaynor i have full on curry bum!...upset tummy today but know its the meds, think also causing bits to be a little more tender and fragile than usual..(sorry for graphics)...long lost tub of sudocrem looks to be the hero of the hour at the mo!.
Only taking paras and Nsaids so think woozyness is the chemo, but definitely going for cocodamol tonight for first time....awoke 0230hrs this morning in alot of pain, so really need a sleep thru....cutting down on ibuprofen due to tummy today.
Out in car today so is improving. though was in for MOT which cost me £160 this morning. Chill out afty..had done quick reccy around local outlet whilst was quiet this morning after dropping daughter off at work....getting there.
Have a restful evening all.
Hi Ros53 - I have been for bloods today so hopefully my next chemo is on Wednesday.We always seem to have big staff shortages - appointment for bloods to day was 11.45 was actually seen at 1.15 not good.I had some cording initially and just stretched it out which was uncomfortable but seemed to work - it might be worth talking to your BCN or a physio depending who you have access to.
70% of hair fell out after one FEC and the cold cap so have decided not to continue with the cold cap as my poor scalp will have no hair to protect it so bring on the wigs and scarves. Difficult for someone who does not do headgear of any description under normal circumstances.
Afternoon Ladies, welcome JKY03. How lucky to have got through FEC and started Dox - the end is in sight.
Tomorrow is my 2nd FEC and this time I have been given Emend so I am hoping to get through it alot better than last time after reading good reports about Emend. I have decided to go for the Coldcap again - so far no hair loss. Reading about some of you that have gone through hair loss you seem to take it all in your stride and I hope I am as resilient when it happens. It upsets me thinking about losing my hair! I have had it cut short in preparation - did you take the plunge with a No2 Bazookas? I have a Headstrong appointment booked for 14th August for ideas on headwear. Also like Bazookas I have one injection 24 hrs after chemo. I was told it is to boost your WBC. It puzzles me that some of us are on FEC and have more/different injections.
Joyce11 - do you have a date for your next chemo after it was delayed, sometime this week hopefully.
Also, have any of you had full ANC? I had this on 1st June and I am struggling with cording. I am exercising my arm regularly but any tips would be appreciated.
Hope you are all having a good day.:) xx
just wondering if can hop aboard your chemo group...cheating really as diagnosed in April and started neo adjuvant chemo for Grade 2 ER & HER2 pos Invasive DCIS. Im 48, have a gal at Uni whose 19 and live with my hubby,sister bro in law and mum .....long story, we're just like the Waltons!
Just to share my experiences so far.....
Currently under going 6 cycles...had FEC x3 and had 1st Docetaxel on 21st July...so day 6 and having 7 days of Zarsio. I found FEC to be manageable...first 4 to 5 days felt fatigued, cotton mouth, nausea....but still managed to get out and about ....took anti sickness meds for 2 to 3 days but ate well and despite steroids slept well too. Bought a bike and in week 2 and 3 did regular outings on it and tried to do 5k walks daily..
I havent used cold cap and hsir all came out in 3rd week after 1st FEC...literally in 24hrs!..now use hats or just go brave and bald...i forget my head gear at times.
Now Docetaxel....found this to be different story...knew would have boney aches and pains.....affects my knees,thighs,back and hips but OMG...no one told me i may get 'labour ' type pains...wonder if anyone else has??...have also been spotting for a week too...started day 3 and struggled over weekend...now on regular ibuprofen,paracetamol and prn codeine..helps but not fully. Rang helpline ....just advised regular pain relief....i on the other hand had delusions of every single pelvic problem you could name!! Also feel 'drunk', dizzy and fuzzy....no taste at all but stil eating well, poor sleep..have no expectations of myself at the mo...bike is staying in the shed for now and im taking it as it comes. phew!!!...long post and like i say Hi to all you ladies.
Take care, its definitely doable and keep well.x
Blimey I'm starting to dread my last three sessions of chemo as I will be having injections then, and the thought of having to do them as well!. Thankfully my taste buds have come back to life and I can enjoy a cup of tea again, I even did some baking and cooked a roast, although I think my body's in shock with the amount i've consumed as I now have heartburn!. Night night all x
It amazes me how everybody's treatment is so different yet in many ways the same. I have had no problems really but then only having half as many as you - always do it at night in case any side effects - was warned about flu type symptoms so ppresumablyI haven'thad any or have slept through them.
just a quick question do you give your own injections and how many do you have?. I am on same ones and have 5 starting 5th day after chemo and inject myself
Hi all, I'm also glad to report that on day 11 my body has finally stopped hurting! , still have slight ache in feet and my hands have become itchy but feel much more positive today, going to enjoy the next week meeting up with friends etc before it all begins again on the 4th, hope everyone is doing ok x