You are having a time of it Daisy! I hope you are able to feel better soon xxx
I’m hoping the Docetaxel doesn’t give me more side effects than EC did. Is it the EC that’s causing you all these problems or the steroids etc?
I have three cycles of Docetaxel to go at three weekly intervals. I’m keeping myself going by thinking that if everything goes ahead on Friday chemo could be all done in six weeks time.
I’m staying very safe... still in lockdown here for another three weeks. My younger son is 21 in about a months time. Hoping we will be allowed to have a socially distant birthday meeting but not too likely! How do the new rules in England affect you? Will it make it more tricky with you shielding? T x
Sorry to hear about tooth but glad its settling . Toothache is horrible.
Im not to great again today. Experiencing side effects of face swelling /throat tightness and so tired all of the time . Have also got discomfort under my arm / breast to today. Cant wait to say feel better .
Hope your bloods are ok .? How many treatment have u got left to go Tracy ?
Hope you are staying safe in Scotland.
Love Daisy xx
All fine today. Had bloods taken this morning so just have to wait and see whether everything ok for Friday. Have had an uncomfortable wisdom tooth but it’s settled down today.
How are you today?
Love Tracy xxx
Thank you for your kind words. Im hoping without the medication i will feel better tomorrow.
Hope your nose and eyes feel better tomorow.
Hopefully not to much longer to go till we get all done
Hope you begin to feel better now that they've stopped the injections and steroids. You've had a rough time of it. Sometimes its hard to pinpoint where your symptoms are coming from. It My eyes and nose are constantly streaming and I was blaming the chemo (as I do everything) but now I wonder if I may have developed hayfever.
Glad to hear that you are able to have your treatment tomorrow and that your bloods are ok. Good that you have all medications in place but hopefully u wont need them and sail through.
Hope your treatment goes ok this week.
Hope your scan went ok today .
Hope you are doing ok too.
Sending love to everyone else on the feb starters.
Ive had a rough day . Had to ring consultant as it appears i may have reacted to dexamethasone/filgrastim injections. Both have been discontinued. My face is swollen .Ears ringing and tightness in throat again just struggling with all these SE .
Love Daisy xxx
I was wondering how you were getting on as I think you are a couple of weeks ahead of me. I am so glad to hear that your second docetaxol was not as harsh as your first. I had my blood tests today and good to go for my second dose tomorrow. I do feel more prepared this time round though as I still have some of the stronger painkillers and diazepam left if I suffer spasms this time round. It's good to be able to see the end of this part of the journey at least!
Thomaschix - hope your appointment went well.
hope everyone coping well
daisy- hope your first EC is not giving that much side effect and you are feeling great
thomaschix All the best for your appointment
carisma for me also it took extra week to recover when compared to fec but the suffering was less when compared to first docetaxol.
one more to go next week and after that have an mri appointment on 2 Nd June and with surgery gp on 4 th June.
anyhow happy that chemo is going to finish
Its so strange how treatment regime differs across the country. There doesnt seem to be a consistency.
Its a very dull day here in the midlands. Not like yesterday.
Ive just finished the steriods today which I'm pleased about as they make me feel a bit rough.
Thanks for the kind thoughts for tomorrow.
i find the differences in treatments really interesting. I’ve had injections with both FEC and Docetaxol but only one injection the day after my treatment. Not for a week like others?!
its cold and very windy here compared to Friday when I got sunburnt!!! but no snow!
Hi everyone and thank you 😊 for all the advice on the injections. I will ask the nurses if they know why they don’t give the injections with EC in my area.
We are having bizarre weather here today! Snow showers! Has anyone else got snow today?
Good luck Thomaschix for your appointment with the surgeon and I hope everyone has as good a week as they can.
Best wishes xx
Hope Everyone is keeping well .
Thomaschix . Good luck with your appt with the surgeon tomorrow.
Tracy . Hope your treatment this week goes well and you are ok with the injections
Love and thoughts to everyone else on feb forum
Love Daisy xxx
Hi - hope every one is doing well.
I have had the filgrastim injections throughout my chemo too (for 7 days with FEC and the same now with Docetaxol. I think the thought of doing them is worse than actually doing them. I had back pain on the last day of the injections other than this latest time when the strong painkillers for the muscle spasms took care of the back pain too.
Today is really the first day I've felt 100% well after my first D - with FEC this would have happened a week earlier. I'm due my second session on Tuesday so hope it is a little kinder this time round - on the plus side only one more to go after that. Then I will be waiting to hear from my oncologist whether I need radiotherapy or not - I have had mixed messages as far as that is concerned.
That’s interesting, I’ve had 5 rounds so far. 3EC and 2 Docetaxel (with Pertuzumab and trastuzumab). With each one I had both steroids and injections. 7 days of filisgram injections with each one. I assumed that came with all chemo. I did find the injections made me ache but that has improved. I found them ok to administer just don’t over think it and be confident. Pinching and holding where you are going to inject helps. Definitely get them out of the fridge at least 30 mins before. I have been quite lucky with SE. Taste changes and feeling a bit sick. Taking domperidone but not convinced it works for me. One more chemo to go and several more targeted therapy.
Hi Artycart injections opposite side of belly button about 2-3 inches away and not in same place, grab a bit of belly, stick it in plunge down listen for the click, release let the needle spring back up and you are done and then chuck it in the sharps bin. Epsom salt baths helped with any bone pain they might cause. Do double check with your team how they want you to do it 👍always take their instruction ❤️💕💕✨✨Shi xx
I found I didn’t really get nausea with the EC until my last two cycles. And even then I didn’t really need to take much medication. As long as I drank loads of water and ate regularly it seemed to be ok. I took a few Domperidone last week as I was feeling really awful and very tired but all better this week. I had two EC in each arm and both now have very sore veins. The left one the vein is tight like a cord and if I stretch out my arm it pulls and is really painful. That’s the main problem I had with it.
Haha! I have some rice in the cupboard so will try making a heat pad. I wonder why I didn’t have to take the injections with EC? They just gave me a large steroid capsule an hour before treatment.
I haven’t got a date yet for another scan as I have 3 Docetaxel to go.
Hope you are feeling ok. Yes i use the pillows on the sofa too.
I had to have the injections (filgrastim) and also on this EC treatment. My tip would be take them out of the fridge ar least 30 mins prior to injecting and also i found doing them on an evening is better. They did give me joint pain so i found that by this was better as could sleep it off rather than trying to walk about. Also try a heat pad . I have brought loads and burnt them all in the microwave! I have now made some using a odd sock and rice which i find is better than the shop brought ones. Can also add essential oils to so smells nice.
Do you have a date yet for scan ? Any tips for the EC treatment. ? Ive taken the Emend Anti sickness. Ondansatron anti sickness and got Domperidone if required. Also Dexamethasone for 3 days then the filgrastim injections to start on Sunday for 3 days.
Love Daisy xxx
Daisy - Im glad to hear you’re ok with the EC. It did make me fall asleep a lot and the side effects have seemed to get a bit more each time.
Thanks for the recommendation re gel pillows. I’ve been having hot flushes now and again but they aren’t really happening in bed so much, though I could use them just sitting on the sofa to cool me down 😂
I will be starting Docetaxel next week and I will have to inject myself for a week afterwards. Did anyone have to do this? I would be grateful for any tips please xx
Great that we are on the downward slope of chemo. Three to go for me xx
Thats fantastic news im so pleased to hear that. Great to think you have only one treatment left too. Yes try and rest as much as you can. I know its must be difficult with a little one to look after too. Was your tumour big to start with ?
Yes pillows are worth a try. They are only thin so u put them either inside your pillow or on top. There is no need to put them in fridge or anything they just stay cool.
I also use them for my feet if they get hot.
Take Care and hope appt with breast surgeon goes well for you.
glad you had your treatment and that you’re feeling ok. I’m totally wiped out these past few days and definitely needing to rest more!
thanks for the heads up on the pillows. I think I’m starting to have hot flushes. Every now and again my face just gets soooo hot!!!!! Might invest in a pillow.
i had MRI results yesterday and they showed that tumours have completely shrunk so just one chemo left next week and then surgery (appointment on Monday to discuss and plan).
hope you carry on feeling well xx
Dont know if this will help anyone but if you are experiencing hot flushes. The gel cool pillows from amazon 2 for 9.99 are really good.
Im finding that due to chemo its brought on menopause symptoms and im just getting hot flushes. These are so much better in my opinion than a fan. Afterwards i shall use them for my dog to keep her cool when its hot.
Hope you are all doing ok and keeping safe. Just had my 1st cycle of EC today .Just feel so tired but ok.
The Nurse said we are on the downward bit of chemo now so that felt nice to hear. She also said that she didnt think there is much of a delay if any for surgery.
Also it was much quicker than i thought.
Take Care and keep safe
Love Daisy xxxx
Sorry to hear you have had difficult time last week . I know what you mean its makes it even harder having to self isolate so its hard to keep mind active.
Ive got the EC treatment tomorrow im a bit nervous regarding any side effects.
Im still getting tightness in my throat / chest but oncologist doesnt know why.
I can understand why we need the radiotherapy/ ???? Extra chemo but it just feels never ending at times.
Hope you have had a better day
Love Daisy xxx
Hi Daisy, sorry to hear you may have more treatment to go through than expected. I have also been told that I will have to have radiotherapy after surgery and oral chemo has also been mentioned. I’m thinking it’s because it’s TNBC and there are no other treatments they can give us?
So sorry you are in pain too. I had a bad week last week and like you I was really down but this week I am bouncing back... it’s a cliche but this is definitely a rollercoaster and to be honest I don’t ever go on them by choice!!
Sending hugs 🤗
Thank you so much vornsta . Thats such a true saying. None of us would have wanted to be here going through all these hard times. Just think im having a bad day and feeling such discomfort in my chest today and under my arm . Hope you are doing ok
so sorry to hear treatment may need to carry on beyond what you expected. I saw a helpful post on facebook which certainly applies to me -
Good that yr bloods are better, hope you find ec ok xx
Hope you are all keeping well.
Just saw oncologist consultant today and he has said that i will need radiotherapy after surgery and maybe more chemo depending on histology results Is this a normal regime ???
Its really upset me as i just was hoping to get to the end of this nightmare by September as my daughter is starting university . I just feel that every time there is another mountain to climb. Even though the logical part says they know what treatment is required .
On a positive note my bloods have now recovered so i can start the EC treatment on wednesday.
How are you all feeling today ?
Ive had a bit of a rough week as unable to have chemo on Wednesday as my white blood cells were too low. They had gone from being too high for treatment last week. Got to go on monday for bloods and to see oncologist for hopefully EC to start on Wednesday. Must admit im feeling nervous starting a new regime. I just cant wait to get through to the end of the Chemo like us all no doubt.
My throat felt a lot easier yesterday so im hoping thats one Side effect that doesnt return .
Love Daisy xxx
Thanks Thomaschix - hope you feel better soon. It's easy enough to give advice - we're not usually so good at taking our own. I know I should probably have asked for help sooner but I was hoping it would pass quickly.
glad they have prescrribed you something. Hopefully you can get some rest now. I know what you mean about normally being a strong person but feeling beat! I’m feeling pretty crappy today but still trying to work and entertain little one but have just given up and come to lie down. Must get better at listening to my body and taking the advice I’d give others!!!!
hope the painkillers work quickly xx
Just a quick update to my previous post - I've just had a call from my GP who has prescribed me something stronger - I guess I misunderstood the doctor from the hospital.
Well I called the helpline and they were lovely but I feel a little frustrated with my call back from the hospital. I've been told just to try taking ibuprofen along with paracetamol. If it wasn't for COVID-19 they would have asked me to come in, check me over and maybe prescribed something stronger. I'm not sure I can cope with another sleepless, painful night. On the other hand I don't want a risky hospital visit. I'm normally quite a strong person but this has me beat!
Fantastic reduction of your tumour Daisy! I had fortnightly ec. Felt utterly wiped out day of chemo and most of fortnight needed naps in the afternoons. I tried to exercise most days where possible. Felt off my food post chemo but did not have too much nausea. I cold capped initially but still lost lots of head hair. Ended up giving up cold cap and shaving after 2nd cycle. Still got eyebrows and eyelashes for now at least.
Carisma - I have gone from ec to weekly pacli. Definitely call them to get advice re the pain.
Great to hear your tumour is shrinking Daisy and by a lot too! I have been using cold cap but my hair has thinned a lot. EC definitely makes your hair fall out though my eyebrows and lashes are still there although thinned out too. For me I didn’t have a lot of nausea but my veins have suffered with the Epirubicin - the red stuff. Both arms now have sore veins but that’s me had my last EC now. I’ve had an extra 4th cycle of it and am feeling pretty rough this time. It seemed to get worse each time lasting about a week then improving afterwards.
By the way I’m in Scotland near Aberdeen as I know you has asked earlier.
My hair came out with FEC (I think it is the E part that makes your hair fall out). Good news that your tumour is shrinking though. I've not really bothered with my wig at all - just wear scarves, etc.
Following my 1st Docetaxol I've had a lot of muscle pain since Friday - it felt as though every muscle in my body was contracting (yes, a little like labour pains) and I've not really been able to do much. Feel a little better today but if not better by tomorrow should I wonder if I should phone the helpline? I've only been taking paracetamol which hasn't really touched it and wonder if I should get something stronger - or is it something I should just grin and bear.
could i just ask if anyone had the EC did your hair fall out ? I still have some hair but its very fine and fluffy but doesnt seem to be coming out from roots like previously.
I wear my wig when i go outdoors but just put a cotton hat on in the house.
Thank you vasanthy
I hope your 5th chemo goes well for you tomorrow.
Stay safe and all the very best wishes.
Daisy- happy to hear your tumour reduced in size. Hope your EC will reduce it further .
thomaschix- Happy you are feeling good in this cycle. I am hoping for the same for same thing for me as I have my 5th chemo tomorrow.
Yes it was lot to take all in . Glad tumour has responded . Just wish my wbc would stay at a normal level as its a worry. I always feel better when there is a plan.
He wasnt sure how much of the EC treatment i will need he will do two cycles then ultrasound again.
My throat still feels tight still and keep getting hot flushes and so tired today
Glad your throat is feeling better today and hope you manage to get some rest. Glad this cycle has been easier for you.
Love Daisy xx
That sounds like a lot of news to take in. How are you feeling about it all? Sounds positive that tumour has reduced and glad they have some sort of plan in place for your treatment.
is your throat feeling ok? Touch wood I seem to have been a bit better this cycle, just tired!!
I went to see oncologist today to get results from ultrasound . Tumour has decreased to 2.6 from 4.6 / Lymph nodes show no changes . They are going to start EC on a two weekly cycle to hopefully .
Has anyone else had this regime ?
My White blood count isnt good again . It has now gone from 20 too high to 0.4 too low in a week. Subsequently he had cancelled my last paclitaxel treatment which was due on Wednesday.
In relation to my throat he also feels that i may have had a reaction to the chemo drugs so another reason to discontinue for this week.
They will then start EC treatment and rescan after 2 cycles to see how it goes. Then refer back to Breast surgeon to discuss surgery options.
Bloods have also been sent for genetic testing.
Just got to keep checking Temp due to low bloods . I just hope they increase soon. Just told to rest.
Hope everyone is having a good day and staying safe.
Love Daisy xxx
Good luck today Thomaschix! I love your fundraising work! Sounds like fun? Glad yr throats are easing up and you are feeling better Daisy. I had some reflux pain on ec which was helped by famotidine. I started regularly rinsing my mouth with bicarb of soda solution- seems to help prevent infections and mouth sores. Did not really feel throat tightness though.
i live in South east london/edge of kent- some nice parks but I envy you yr mountains T!
my kids are 11, 15, 17.
enjoy the sunshine all ❤️
I never thought I’d look forward to going to Tesco so much!!!! Lol!!!!
Glad your throat is feeling better. I’ve got some mouthwash too and that does seem to take the edge off.
Maggies is a great place so glad to be supporting them.....even if I do think maybe I should actually be taking it easy!! Ah well!!! My little one is 3 1/2 so sure he’ll keep me motivated!!!
hope you have a nice day in the sun xx
What a fantastic thing to do . Well done for raising so much money especially when you are going through all this treatment and looking after a little one. How old is your child ? Ive got two children aged 15 and 18 . My Daughter is due to start at Bangor university in September . Hope you managed to get some rest too.
Maggies centres sound like a supportive point. We dont have anything like that here in the midlands.
It must be lovely to be surrounded by such beautiful countryside much better than living in a city !
My throat feels a little easier today so far . I tried some difflam mouth wash too and also the co amoxiclav antibiotics may hopefully be starting to work now.
Enjoy your day and well done again. iI know what u mean about getting out. i cant wait to go to the shops and do something normal again.
Thanks Daisy (i’d almost kind of forgotten!!!). How are you feeling? I’m very achy today and throat starting to get a bit scratchy so hopefully little one will let me get some rest.
However I crazily signed up to do the 2.6 challenge for my local Maggies cancer centre. 26 minutes of “exercise” on the drive each day for a week in fancy dress singing show tunes. Raised £850 since Thursday so feeling a bit of pressure to actually do it now!!!!
I'm from South Wales and surrounded by hills that I can’t wait to get back out on....but to be honest I’d be happy just to have a walk around the estate!!!
Good luck with your Mri Scan today.
Hope all you ladies are doing ok and enjoying seeing the sunshine.
What part of the country are we all from ? Im wolvèrhampton in west mids
Its great to see the sun but cant wait to take my dog out for a walk !
I remember you posting a nice picture of the beach Tracy hope weather is nice in Scotland.
Hope everyone has a good day
Thanks Daisy. With my first three treatments of FEC it just felt like my throat was tight (almost like a bit swollen) but last treatment it became more painful so all prepped and ready this time just in case (I hate the anticipatory waiting for side effects to kick in!!)
thank goodness for the weekend and sunshine tho so we can sit in the garden with apple juice and pretend we’re in a beer garden with a cider!!!!