Morning all -day after second FEC - didn’t sleep v well , does anyone else get hit feet after FEC?mine are so hot at night they keep me awake .
I agree Whytefawn but i also think i made the mistake of not eating when i should have done and also maybe made some better choices. Ive always had issues with weight/relationship with food and before diagnosis i had cut down down dramatically on added sugar and bread and felt like i was in a good place with what i was eating. Due to the unpleasant taste i have sucked a load of sweets (sugar and sugar free) recently and along with the amount of bread etc i know my guts are not right. So this time without putting too much pressure on myself i just want to try and correct that. I know its not an exact science and we are all different but for me its part of keeping that bit of control when so much is unpredictable.
Have a good day everyone and hope today goes ok Flora 29 x
Oh wee baldy burd! I'll be following your example soon. Sending hugs. And others, please make it clear in posts how many days since your infusions and which ones as with this bubble brain I can't always remember. I've now slept most of the day, just up out to get some pre made pasta bake from Lidl at 4pm. I think it was a two portion one which I devoured. Slept after.
It's 6 now. Don't feel nauseous. Tired though. Hope to watch bit of tv then sleep most of the evening and tonight.
Infusion Tues, now Thurs.
Love to all.
Afternoon - glad everyone seems to be doing OK
I had round 2 of my FEC this morning- all went OK - home , had lunch and a nap and feeling OK. If I follow round 1pattern I will probably feel a bit sick tomorrow so got nothing planned- youngest daughter coming to stay for weekend tonight so looking forward to her company - and cooking 😊
Stay well everyone - take care of yourselves, eat well, drink a lot ( water not 🍷) , take all the meds you need to get you through .
Been sleeping lots and slightly nauseous. But haven't taken most of the anti nausea meds or steroids just one Emend and a couple domperidone. It's really not the horror I expected. I've been out for short walks. Just tired mostly and a little brain foggy. Haven't really wanted helpers round me as I can pretty much take care of self, and the thought of making conversation or worrying if they are bored is too much to take on.
I filled my fridge with lots of salad stuff I really don't feel like eating it. I'm actually wanting something more substantial. When out I had a toasted hot salt beef, cheese and pickle sandwich and it was heaven.
I really thought I'd be out for the count but it's not been like that for me so far days 2 and 3 post 1st EC just fatigue, brain fog and slight nausea. But I can eat and enjoy it.
With you weebird- thought I was doing ok until have nearly collapsed 2 days in a row. Couldn't even sit in the chair waiting for picc line flush yesterday in clinic.Thought I was going to pass out and make a scene.Any exertion seems to knock me out - clammy,sick,feint.Told day 7/8 low - so hoping I can get back on with life soon! One bonus - don"t seem to be suffering the aches like some ( even with the gcsf injections).
Big hugs to all xx
Cuddles - sound like you had a whale of a time, what a good start ! Hope you manage to get some sleep x
Flora - Hope the steroids help with the bone pain. I only had Dexamethasone 4mg for 3 days but the couple of days after were a bit grim, felt rubbish. I asked about the Loraditine and he had never heard of it being used. He did say that if my bloods are ok he could reduce the dose of Filgrastim so we shall see on friday. Think im going to take everything for a bit longer this time and regularly - anti sickness and painkillers - see if it makes a difference overall. I found a heat pack worked really well for the bone pain too. x
Weeburd - good to hear things are picking up. Hopefully it will continue now you are into the 2nd week but i know what you mean about getting your hopes up. As for working, im in a hospital so have been told i cant go back until all treatment finished - thats most of this year then so making the most of it.
Miss Green - hope you are doing ok x
Evening all.
Well work was OK, bit tired but no real side effects yet so managed OK, will play it by ear for tomorrow, I have a long drive, well about 25 miles each way, so its maybe time to have a couple of days off. I go to work to stay sane, I work in an office so its sitting down most of the time and (most) of the people I work with are really great and we have a laugh so it helps, and they watch me like a hawk and if im doing too much they soon tell me, this is the 2nd time they have been thoruhg it will me so they know what to look out for. Im vey lucky.
I am taking my antisickness and still driving, I havent read the warnings but I drove last time too and it was OK.
I had forgotten about the antihistamines for bone pain, I think I took Claritin and Piriton last time when on Docetaxel, i took them for the full 9 weeks I was on it and it definately helped. My nurse hadnt heard of it but was quite happy for me to try it. If I remember rightly the Clarityn was for during the day as it was none drowsey and the Piriton was for night time, but I will ave to check that. Thks for the reminder.
Cuddles. I cold capped last time but it didnt work for me, by the 3rd session my hair was so thin i had to have one of the paper caps on under the cold cap so decided it wasnt worth it. And the length of time it added to the treatment was a pain. Didnt even think about it this time.
I hope everyone has a good night, going to bed shortly to relax.
love Julie x
Moijan, I hadn't even thought about driving and the anti-sickness tablets. For the 3-4 days of having the tablets, I don't need to drive, so it isn't an issue. I hate being sick, so would personally rather not drive for a few days than risk it. But its personal choice. And what is black chocolate? Do you mean dark chocolate?
Glad day 1 has gone well, and they kept you entertained, Cuddles! Hopefully all will stay OK for you.
Julie, like Jude I'm surprised you're planning to work on the day after treatment. How did you find it? I'm lucky that my treatment is always on a Friday, so I have the weekend to recover anyway. I'm continuing to work throughout too, but taking the time off that I need. Do look after yourself. No one is indispensible, and they will cope without you for a few days.
Weeburd, I didn't have sensitive skin, but I did come out in spots in the middle week. Possibly low platelets, I guess. Some chemos cause neuropathy, so maybe it is that?
Jude, I also had clinic and bloods today and am all set for #2 this Friday. They're apparently going to give me extra steroids to help with the bone pain, and having just checked what I was sent home with last time, I can see i've already got twice as many steroids as I had the first time!
If anyone else is having bone pain (you might get this if you're on taxotere/docetaxel and/or gcsf/pegfilgrastim injections), you may also be interested in this article: https://link.springer.com/article/10.1007/s00520-017-3959-2
It suggests taking Loratadine (OTC antihistamine) as it can help some people. I asked at clinic today and the nurses hadn't heard of it, but will ask my consultant when she's back in the office tomorrow. But I'm planning to give it a go anyway, as the trial indicates it won't hurt, but might help.
Hi ladies,
love and hugs hugs to all. Yes have antisickness meds, but like to drive myself about so haven’t taken them, silly I know. It’s just a background type nausea..which eases when I nibble.
re constipation...ladies, one thing which will help(apart from buckets of water)..is black chocolate....not too much tho, unless you want the opposite!
moijanx
Well, one of my old friends turned up to my first session and there was an amazing lady in the next chair so it was more like a social occaision and I had to keep reminding myself that I was having chemo!
I took the cold cap off as it was uncomfortable and it interfered with chatting as energetically as I wanted to to these very interesting ladies plus the beautiful Ethiopian nurse (both inside and out). The cold cap didnt really seem to fit all over my hair anyway, it was a horrid thing with ghastly chin straps, so I thought what the hell, I'll get a buzz cut in a few days.
It was amazingly easy. I had some numbing cream on my 4 day old porta cath area, had three syringes of each drug and felt somewhat 'stoned' by the end which wasnt too unpleasant. Little wobbly getting to the taxi home. I hadnt eaten much the night before and only a banana and herb tea in the morning so was ravenous afterwards and had a big raw salad and some brown rice.. Now some hours later I feel slightly headachey but not too bad. No sickness.
I suppose it is going to hit me in the next few days...... Im going to get into bed and watch tv now 6pm. Wonder how the night will be?
Crikey Jujubee you are keen ! What do you do workwise ? Ive got a portacath so can relate to how easy it is to have the chemo - relly didnt want stabbing each time ! Hope you are feeling ok today.
Weeburd - not sure about the sensitive skin. I've gone from oily skin to using loads of moisturiser but im guessing its different to that ?? I've definitely had the headaches but think its not drinking enough mainly as its tastes so yukky ! Good to hear things have "moved" !!
Had my oncology appt yesterday and as long as bloods ok all good to go for round 2 on friday. Topped up the food supplies today with a few healthier options. Its my sons 13th birthday tomorrow and just made a chocolate cake...feeling a bit sick as ive been ensuring it all tastes ok - serves me right ! x
Evening all. Hope you have all had a good day.
1st dose of tc done. Feeling ok so far, planning on going to work tomorrow so fingers crossed for no side effects.
Can't believe how easy it was with the picc line. Wish I'd been offered that last time. No painful cannula insertions for me. Woop woop. Silver linings and all that.
Keep positive.
Julie xx
Hi everyone- hope you have all had a good day. I saw my oncologist today before second round on Thursday - was feeling anxious for some reason - don’t know why since I have been feeling so well - think it’s must be just the thought of the chemo again Thursday.
Anyway welcome to Julie and Miss Green - hope it all went OK for you and you get through next few days well.
Flora your wig is lovely- I have one to pick up tomorrow just in case cold cap doesn’t work - or just for a change as I had my haircut really short.
Weeburd hope you have sorted out the bowel movements - I take Dulcoease as I find it quite a gentle way to get things moving.
Moijon - Hi - don’t know about anything for the fingers with Docetaxel but following with interest if you find anything as Inwill be having it on my last 3 chemo rounds. Have you not got any antisickness meds to take for the nausea?
good luck anyone else on round 2 this week - Macneech
Have a good week xx
Ladies, can anyone help me please?
have just nearly finished my week off (10 days since last dose)😥😥after 1st cycle of taxol and my fingers are still Very sore and numb at the tips, I’m already on a reduced dose, I don’t recall this 17 years ago on Docetaxel I know about udderly smooth, but has any new drug or cream come out that helps.
Also feel vaguely nauseous all the time. Maybe I’m far too long in the tooth to be doing thisxx
love to all of you
Moijan😪
Oh chrissy - feel for you.Going on everyone's different experiences it seems so important to get ahead for chemo 2 - knowing what symptoms need to be nipped in the budd.Hopefully feeling better soon.
Flora your wig looks so natural - I have one in the wings ready 😕.
Aches haven't set in yet - start injections tomorrow.Is it the T that makes the aches worse?Got that to come later.
Welcome Julie xxx
Oh, Chrissy, the first week is very much the hardest part, but you should hopefully start to feel better from here on. My second/middle week has been good - i've mostly felt completely normal - but I have planned no commitments now for the first week after the next treatment as last time I couldn't get comfortable due to the bone aches and couldn't focus properly.
Macneech, the hair loss doesn't worry me too much, but I know for many it can be very upsetting. Having been through it once before, I know what to expect, and that by summer it will be regrowing again. And I have a great wig ready to go. (pic on the left is me in my wig).
Glad you've had a good week Bibi. Long may it continue!
And welcome Julie. So sorry you're back here so soon. Me too, also on TC, but mine is invasive ductal and 8 years ago, rather than inflammatory. Fingers crossed it goes OK tomorrow. I've found the bone aches hardest and worse this time, but I wasn't sick before, and haven't been this time either. I think you're either prone to that or you're not.
Hugs to everyone xxx
Hi all, hope you dont mind me joining in.
Have my first session of TC chemo tomorrow after being disgnosed with inflamatory BC last month, not looking forward to it, think its cause I know what to expect, 2nd time round for me, although I had FEC-T in 2016 but still similar side effects I think. I have a PICC line this time so at least I dont have to worry about them not being able to get the cannula in.
I found this forum really helpful last time, it feels less lonely knowing others are going through the similar and understand.
Hope everyone is doing Ok with their treatments.
Julie
Hi Chrissy
The first week is the hardest. You will find that you're energy levels will improve over the next few days. And you're taste buds will hopefully improve soon too.
The itchy scalp is due to the imminent hair loss I'm afraid.
Hugs
Sue xx
Hi ladies sorry I’ve not been in touch have had a horrible week but the nausea lasted 3 and half days just sooo exhausted now I know what it must be like to feel 90,
ive got no appetite everything smells yuk mouth like leather back ache and so lethargic. My head has started getting a bit itchy too. Sorry for moaning ,
hospital rang ant me Friday they want to repeat bone scan in 3 months not sure if that’s good or bad. So roll on the sun I’m going to try to go out tomorrow if it’s nice as I’m like a hermit.
hope everyone else is getting on ok I’ll be day 7 tomorrow following 1st FEC but it still seems all surreal dispite the side effects.
Welcome Cuddles.Thinking of you Jude and Flora - although I think I am prepared, I am thinking the hair loss mountain is the worst to accomplish. I, like you Bibi have pursued the cold cap but don't hold out huge hope.I am sporting a much shorter hair style currently which l have had to allow to go curly 😣( which l know I should make the most of). I have my eye brow kit at the ready.
Feeling a bit phased out this morning but did venture around Asda with my daughter.
Thinking of everyone xxxx
Morning everyone and welcome Cuddles - the waiting to start is the hardest bit I think - hopefully you will feel better once you get going. The side effects really do very for everyone- I have been very lucky and had few side effects and since after the first 5 days have felt fine.
I haven’t noticed any hair loss from head yet so hopefully cold cap is working 🤞
I did go and buy some products in preparation for losing eyebrows - need to practice how to draw them on now - a little mother daughter bonding time with make up coming up I think.
Keeping active with walking and yoga but find I get tired more easily than normal - plus side of that is I quite enjoy a little afternoon nap or box set whilst on sofa 😊I find I still don’t fancy citrus fruits but eating lots of veg and homemade soups to get my vitamins. Think I would struggle with fasting - have tried it in past but I have decided just to try to eat healthily. I wanted to eat a lot the first week after having steroids and developed a bit of a cake craving - think I will be more prepared next time and have a box of veg sticks, nuts, hummus, boiled eggs to snack on - I have read that protein snacks help to curve hunger cravings and I’m vegetarian so those are my go to snacks.
Have a good day everyone x
Just to note, i'm on day 17 of taxotere & cyclophosphamide, and hair loss is starting. A few strands landing on my shoulders the last couple of days, and today my crown is tender and 5-10 strands coming out when i gently comb fingers through my hair. I haven't used the cold cap. Here we go!
Macneech - good to hear things improvong a bit - its all a steep learning curve isnt it. I am having 4 cycles EC followed by 12 weekly of Paclitaxel with 3 weekly Herceptin. The bad taste has been intermittent over the last week or so and particularly bad the last couple of days.
Hi Cuddles - plenty of those always available ! Try not to be scared of the SE - they are all so varied but its only temporary. I think that for me thats the important bit to hold on to - its miserable at times but it does get better. Usually about 7-10 days after chemo is when you start to be more at risk of picking up infections so just need to keep away from those people with bugs ! Should all improve before next lot of chemo due. Have they mentioned about having injections to boost your white cell production ? (GSCF injections) Some people have them, others dont - dont quite know the rationale.
I too read that article on fasting - is it something you have done before diagnosis ? I have been doing it on and off for about a year but properly since last sept. Felt so much better and lost a couple of stone - still plenty more to come off. I also have a small amount of Kefir every morning too which i love - although the taste bud issues havent made it as enjoyable lately ! Its an interesting subject but im not sure if i will try it prior to chemo - think im just going to concentrate on getting diet right. As i said above i seem to have gone right off track with regards to carbs/sugar etc which im sure isnt helping.
Yes, I am very interested in the fasting idea, have tried to discuss with the staff at the hosp but they think its a crazy idea. It was the Decca Aitkenhead Guardian article that brought my attention to it. Anyhoo I will see how I feel after the first infusion of EC on the 20th Feb and maybe just have fruit, veg and water or herb tea the day before..
Isolation phase? Sounds daunting...
Hello everyone, I shall be keeping an eye on this thread. Im starting EC on the 20th for 4 sessions then 4 of Herceptim plus the P one for HER+
Am very frightened of the SEs but as the days are getting closer to the first transfusion Im feeling a wee bit better. I'll be at the Royal Free London.
Many thanks to you all for being here,
Cuddles, (which I will need plenty of!)
Had an ok day - up to doing housework this am.Eating and drinking a little.Have kept up the steroids and ondansetron.- I am sure this is helping.Not hit the bad taste thing yet jude51 but will see.(what chemo did you have)?Sending hugs to everyone xxx
Unfortunatly Flora29 i dont like tea of any sort - i so wish i did as there are so many lovely sounding flavours out there...just takes like a crayon dipped in hot water ! Elderflower cordial, fruit squash and sugar free sweets
helping a bit. I find it quite hard as i normally drink just water and nothing sweet like that but needs must. I had Emend tabs (anti sickness) for 3 days and the steroids/metoclopramide as you did and that seemed to do the trick. I tend to go for the carb rich foods / snacks when feeling sick but i know that they make me feel rubbish in the long term - had really cut all those down before diagnosis and really dont want to slip back onto old habits. Also found even after the nausea subsided i still had to eat soon after i got up otherwise i felt unwell - annoying as i often dont have breakfast. Just need to try and fine tune everything and get some control back.
Really hope everyone is feeling a little better xx
Morning all - hows everyone feeling today ?
My main issue is the lovely taste i have in my mouth !
Hi all - have stayed in bed all day as only managing to keep a few sips and a rich tea biscuit down. Brufen seems to help so don't know if sickness is due to chemo chemicals or migraine from cold cap - maybe a bit of both! Taking steroids for 3 days then 5 days of gifs injections.Will keep up the Brufen I think if expecting achy joints. Sending big hugs to everyone xx
Evening all
Macneech - hope your nausea passes soon - just try to rest as much as you can and take as many antisickness meds as you are allowed - don’t suffer.
Chrissy - gscf injections for 7 days are often given to help your bone marrow produce more white blood cells and a side effect can be bone ache. Apparently Epsom Salt baths are good for bone ache in case that helps.
Katie - I know what you mean about being more chilled now treatment had started- I feel the same. I like your thinking - after next one will be a third through it 👍
Hope you all have a good nights sleep and feel better tomorrow x
Hello jude51 thank you for your post.
I was given emend on Monday before having FEC and then a reduced dose tue and wed.
I also had dexamethasone for 3 days and finished the last one at 4 pm today.
So I am only taking domperidome 10mg as needed.
Today I haven’t had nausea thank goodness but have lethargy feel like a 90 yr old and no appetite. Never felt like it before so drained. I am not having any injections ( what would that be for?).
I have been having back ache for the past 6 weeks. I had a bone scan just over a week ago but no results as yet.
I hope everyone else starts to feel a bit better soon thinking of you all.
chrissy xx
Katie - i know what you mean. Although it wasnt plain sailing the first week after chemo i too am looking forward to my 2nd chemo 23rd feb.
Chrissy - sound like you've had a rough week,hope things settle soon. Have they adjusted your meds or have you just stuck to what they've given you ? I had a big dip on day 5-6 and felt rubbish, think it was a combination of finishing steroids and the injections - guessing thats whats causing your back ache ??
Macneesh - hope you get sorted too and things settle soon.
Take care all xx
Just checking in - 1st Dec today - cold cap went ok.Felt ok until like you chrissy68 started feeling Sick mid afternoon and have not long thrown up loads 😣.Will try and get the anyi sickness tablets sorted xx