My chemo started exactly 2 weeks after my appt with the oncologist.
@Poacher65 that's great you've found something that tastes good - and what a lovely option, too!
@Love running thanks for for those quotations. I found them very appropriate and encouraging!
I finished my first course of GCSF yesterday and the bone pain did catch up with me - it was quite painful all in lower back & hips, but Paracetamol, a hot pad and keeping mobile are really helping.
I've just come back from a walk with my dogs - it's a glorious morning here which always helps lift the mood.
I hope you all have the best day possible! X
@Poacher65 Hope you start feeling better soon. I also found I enjoyed ripe vine tomatoes and I ate them with salad leaves and a hard boiled egg. My appetite has improved now and I'm eating proper meals again but still choosy about what I feel like eating. Iced fruit lollies are good too if you struggle to drink enough.
@TicTok Welcome to the group, I think you will find that everyone's supportive and caring and it will help you get through your treatment. I'm on my 2nd course of chemo as I'm on the ROSCO trial. I had 4 cycles then a break for surgery and now I've had the first of another 4 cycles. I think it was about 10 days from seeing the oncologist ( the first time round) but it depends on whether extra tests needed etc.
I'm being treated at Sheffield and I'm amazed at how quickly and efficiently everything has happened.
Best wishes to all. x
Morning @TicTok ...I was about 10 days between my oncology appointment and first chemo so a long wait when you want to get started. I hope your wait isn't too long....mine was delayed due to needing to get a specific blood result back that was sent from Lincolnshire to London...to determine if I could tolerate a chemo drug.....I didn't gave the enzyme I needed so there was a slight change in chemo regime.
Have had a strange couple of days...very headachy, bones achy from GCSF injection daily (last one tomorrow!) and just no energy at all. I'm hoping this gets better...im only Day 7 today so still early days.
Found a food I 'enjoyed last night...ripe vine tomatoes! Anything else is just 'blurgh'...
Anyway, I hope you are all doing OK....take care all and together we can do this ❤
Hi I have my first oncology appointment on mon , can anyone tell me how long is it till your 1st chemo please
These sound great - thanks for sharing @noodledoodle!
I have so much catching up to do.
I want to start with a quote I found few weeks ago on Instagram (The goodquote) - ‘There will be better days, so please find strength in the wait’. This is what I did, and now I am back.
Welcome @worriednow to this wonderful forum. Like @Purpledaze I will also be taking Paclitaxel later on after I have completed 4 cycles of EC. I can’t give you any specific advice, except to talk to your contact nurse and medical team. When I first read the long list of side effects, I too felt overwhelmed and worried. You are not alone ❤️.
I had a first rough night, where I camped on the bathroom floor on my yoga mat. I did a lot of breathing exercises that night. It took me back in memory lane, when giving birth to my two daughters. My daughters have been amazing and so strong on that first day – not easy for them to see their mum like that. My husband too was great helping me and taking care of the girls. I am so fortunate to be surrounded by them.
After 12 hours on the bathroom floor, I picked myself up but it left me quite tired on Day 2 and 3. Luckily, the anti-sickness meds kicked in well after that first night. Mostly, I have a constant headache and fatigue. @Purpledaze, my taste has not changed either but I also gave up coffee (unimaginable few days ago, because I am addicted to coffee) which might explain the headache (withdrawal symptom😉). My appetite plunged too, so I made homemade high energy raw balls with dates, whole nuts and coconuts, which are easy to eat. @Poacher65 my nurse told that trying new food (things you were not keen before) could help with the loss/lack of taste. Popcorn was a good suggestion from @Purpledaze.
All the strength I could gather on Day 2 and 3, I used to take walks and get my pulse up for 30 min. My contact nurse strongly advised to motion and get my pulse up at least 30 min every day to help the mind and the body to get my energy level up. She said that it won’t make it worse and she was right. I managed one ‘long slow’ walk a day and it really boosted my energy level. I also did few gentle Pilates exercises to ease my muscles and bone pain that might come from the injection of GCSF and to continue my knee rehab (still recovering from an ACL surgery in October 2020).
Today Day 4, I feel much better. The headaches are still present, I have now a red glow in my face from the cortisone (I look sunburnt) and my skin is so dry and peeling but I feel so fortunate. I even managed this morning to run a short stretch – I thought if I can walk, I can run. It was more speed walking than running. I felt so alive (and healthy), feeling the fresh air and even the rain on my face. I have therefore decided to cherish these special moments that makes me feel good and to write them down every day in a small book. Hopefully, it will help me during darker days to remind me that there are and will be special moments in between.
@Karden : good to read that you are feeling better too. How are your ankles?
@noodledoodle Good luck on Friday for the PICC-line and on Monday for the first cycle. I understand you so well, I had the same anticipation to start. Each day brings us closer to the end of this journey. I now count down the cycles: 1 down 15 to go. Hopefully you can enjoy to the max your last ‘normal’ days especially if the weather is nice.
I will finish with another quote I read today from Instagram: - ‘I promise… what hurts how, won’t hurt forever.’
We will go through this. I wish that you all have a good or better day.
just thought I would share this link. Virtual Workshops via zoom for people with cancer, just to make us feel a little more upbeat, run by a charity, so all free.
I have booked onto the skincare and make up, as my make up skills are zero! Might come out of this high maintenance 😂😂
Thank you my lovely. It’s so nice to be in this forum with so much support and love for one another. We will all get through this and kick it out of our systems for sure
@worriednow welcome to this group. I hope you find it as helpful and supportive as I have, and that you found the info you were looking for about Paclitaxel in the wider forum. I will also be taking Paclitaxel, but later on after I have completed 4 cycles of EC, so I haven't started thinking about it yet.
I'm Day 8, and I've had a good couple of days - an ever-present wooziness and light headache, but otherwise ok. The nausea & sickness have gone, thank goodness. I know everyone is different, but I was sidetracked by sickness on Days 1 - 3 of EC, until I got properly on board with the anti-sickness. I'll know better for next time and will be starting the anti-sickness from the get-go!
I'm lucky that my taste hasn't changed so far, although my appetite has diminished and there are definitely foods I'm not interested in (have gone right off coffee, which seems unbelievable!). @Poacher65 I'm sorry you're getting the horrible taste with food. I had also heard that using plastic/wooden cutlery can help, eating little and often + sipping lots of water/juice/cordial throughout the day. Bread sticks, ginger beer, popcorn, clear soup, and dried fruit have been winners for me. A friend who had Covid and lost her sense of taste/smell, recommended the popcorn because she said it is a food that doesn't really have much taste anyway, but does have some texture.
I also started the GCSF injections 3 days ago, but aside from wooziness and light headache all the time, have not had any other reactions, so here's hoping you can get through your injections ok, @Poacher65
@noodledoodle all the best for your start of chemo. As you say, sooner started, sooner it's finished. Will be thinking of you on Monday. Hopefully you can follow @Love running plans for a lovely pre-chemo weekend. I think it's going to be nice weather, too!
@Love running how are you feeling after your first chemo? I hope you are managing ok. As and when you're feeling up to it, I'd love to hear about your balcony garden and what you have planted there.
@Karden that's lovely to hear you're feeling almost normal after a rough few days. Suddenly, hoovering the kitchen seems like a really fun activity - LOL - but take care of your ankles from when you fell the other day!
Have a good evening and I hope tomorrow is a better day for everyone x
Good to hear from you @noodledoodle
The Picc line will make it so much easier for your chemo infusions and I think you will soon get used to having it in place.
Good luck for Monday. 👍
a bit behind you guys, but had my oncology appointment today and PICC line will be done Friday and chemo starting Monday.
EC 3 cycles to begin and then Paclitaxel and Carboplatin after that. Just glad things are moving again. Second phase as already had surgery. Sooner started, sooner finished!
Hope you are all doing okay.
Take Care xx
The bad or no taste issue is a problem. I had that with Docetaxel but not this time. Try different things that work for you even if it doesn't seem like a proper meal. I found that fresh fruit and salad worked for me, juices and cordials, toast, plain biscuits, savoury crackers and cheese spread. I would have a roast dinner occasionally but without the meat as I totally went off any meat at all.
Be assured that your taste will recover when chemo finishes, it was gradual over a couple of weeks for me.
I think you will start to feel better overall for the last 10 -14 days of the cycle, most do. 👍
@Karden not too bad thanks...feel OK just washed out, tired and absolutely no taste so trying to get enthusiastic about food is proving a challenge!
It's only my first cycle so I'm expecting to feel worse next time as feel incredibly lucky that I seem to have done ok.
I'm glad your feeling OK....im having EC then Docetaxal so we will see which one is worse for me....like you say it seems we are all different in how we feel.
Started the GCSF injections today that I have to have for 5 days and they are supposed to give you terrible bone pain so am anticipating the worst.....anything better will be a bonus.
Hope everyone else is feeling OK.
Take care all xxx
@Poacher65 I hope you're doing ok since your chemo. I had the bad taste for most of my first course of chemo and through trial and error I adapted my diet until I found what tasted best. I went off my favourite breakfast tea and drank more juices and cordials.
@Love running I'm pleased you were able to enjoy a BBQ and a little gardening and I hope you are coping ok since your first chemo. The shower sleeve is a nuisance isn't it but it does a good job.
@Purpledaze How are you feeling now, I hope the nausea has settled down.
It's day 6 for me and I'm now feeling almost normal. I slept all day for 2 days on Sat/Sun and stayed out of bed for most of yesterday. Today, I have been showered and dressed and hoovering the kitchen. I have eaten quite well today and I think I may be over the worst. If so, then this FEC is definitely easier than the Docetaxel chemo for me, although I know it's different for each one of us.🤞
Best wishes to you all. x
@worriednow I have just seen your post and noticed that no-one has replied yet.
I'm afraid I can't comment on Paclitaxel as I haven't had this but I just wanted to let you know that you will receive amazing support and information by being part of this forum.
You may want to consider contacting one of the nurses - details on this forum. I think you can phone or email. I hope you soon hear from someone who has experienced this treatment. Have you looked on earlier monthly threads as these members will have gone through treatment by now? You can put Paclitaxel in the search field to narrow it down a bit.
Hope this helps. x
hello I will be starting my chemo pacximetal hope spelling is right weekly next week . Just scared if I can tolerate it . Nerve pain is my big worry. Should I use cold treatment for ties and handed during chemo will it help? Lots of things running on my mind
I hope you are all doing fine today. I have taken the few last days to enjoy to the max my last ‘normal’ week-end. I have been eating my favorite food, went for a beautiful walk in the archipelago of Stockholm and met few friends for a BBQ. I´ve also been baking a lot for my girls. I even managed to run one last time, it was a bit challenging with the PICC-line though (nothing compared to taking a shower with the protective sleeve, which was epic). This afternoon, I will try to build the mental strengths for tomorrow while gardening on my balcony.
@Poacher65 , I hope you had a better night and will have better days. I have been given the following advice from my Swedish nurse regarding food (not tested though):
@Karden how are you today? Sounds that you hurt yourself quite bad. I hope you are not in pain.
I have found myself more distracted since I got to know I had BC… My brain never stops wondering off, not focusing. Two days, I walked to the local grocery store about 10 min away from home. When at the store, I realised that I had my bicycle helmet on instead of a beanie. I also booked an appointment in a store for a consult and went to their competitor the day and time of the appointment. Awkward moments at the time but we had a good laugh with the family afterwards.
Have a fantastic Sunday
. @Karden that sounds painful! Take care and hope it recovers soon. I've found myself to be more clumsy and knocking things over etc. I think it's the fatigue.
I'm learning to do things I like in bitesize - it's hard because I just want to go for a long walk with my dogs, who look at me hopefully every morning! But realise that little and often is better! @Love running your encouragement and enthusiasm is inspiring - thank you!
I'm getting a port a catch fitted in a week or so. Will be worth it I think altho a bit nervous about the procedure.
@Shi really good advice about seeking help for nausea / sickness. I was thinking oh it's just chemo but my husband made me call the helpline and they got me some more help.
It's so good to have this forum and thank you for all your kind words, encouragement and support!
Hope you all have a good week and x
Had rubbish nights sleep....no real reason but did start feeling sick and still do this morning....again nothing major.
Decided I'm going to check my temperature a couple of times every day routinely so hopefully nothing creeps up on me!
Horrible taste that's making all food and drink taste is annoying....any tips?
Hope everyone else who had chemo yesterday are OK xxx
@Poacher65 I'm pleased you're feeling ok so far, I had my first of 4 FEC+ Herceptin on Thursday. I have previously had 4 Docetaxel/ perjeta/ cyclophosphamide/ Herceptin with a break for a lumpectomy.
@Love running My PICC line has also gone back in as it had to come out for surgery, it was fine as I knew what to expect. Having to cover it for showering is an inconvenience but worth it as it makes having chemo easier.
Day 3 and I'm feeling ok, just more tired than usual. I didn't help myself by falling down some steps yesterday whilst hanging out the washing. I have 2 swollen ankles, a bruised big toe and shin but at least there's nothing broken.
I wish everyone well and hope you have a good weekend. 😊
Well done poacher 👍 keep drinking water, flush things through. Keep eye on temperature and ring rapid response if antisickness meds don’t work, don’t think oh well this is chemo. Well done on having cold cap too 👍 keep focused 💕💕✨✨Shi xx
Well first chemo done.
1 down...5 to go...
Did cold cap which was fine.
Was meant to have FEC for first 3 cycles but I am missing the liver enzyme needed to have the 'F' drug safely so just having EC.
No real issues while having drugs....feel a little lightheaded now and a but headachy but thunk that's the cold cap...and also have strange taste in my mouth but nothing major.
Let's see what next few days bring.
How are others who have had their chemo today?
Tale care all xx
Welcome to the group.
I hope you manage to have your walk yesterday. In my wildest hopes and dreams, I wish I can have few runs in between cycles. I found a book that I will start reading on Monday when I start my first cycle, that hopefully will give me the strengths. 'Run for life: how one woman ran circles around breast cancer. Jenny Baker'
It is surreal to me too. I can't grasp what is happening. Since the surgeries, I am feeling well and resume with my life activities. And yet I need to go through chemo and its effects to make sure it is gone.
I have not made up my mind on the wig yet (no consensus in the family on which one to choose), I got few caps and headscarfs. My husband bought me a hand full of colourful beanies in very soft material (in Sweden, summers can be chilly).
Got my PICC-line yesterday and now trying to get used it.
I wish you all a very good day
We are in a very similar place! I too had WLE for grade 3 triple negative, with clear sentinel node. I had my surgery 4 weeks ago, March 31st, but not seeing oncologist until next Wednesday, so presumably our chemo will be the same, or similar too.
I have got a few nice scarves and beanies but have a wig too. Don’t expect I will wear the wig often but will probably wear it every now and again when out and about.
keep us informed of how you are doing and take care. Xx
Hope it's OK to join this group. Started my chemo yesterday and thought May group made more sense with the timing.
Had surgery a month ago WLE with clear sentinel node, but triple negative, grade 3, so consultant recommended chemo. I'm having EC followed by Paclitaxol. Day 1 was rough for me. But feeling better now I've upped the anti-sickness. Hoping to go for a gentle walk later.
It all feels very surreal! Can't quite believe it's happening. I guess in a way that's a good thing as it means there are still lots of times in the day when cancer isn't the focus of it all!
I'm opting for head coverings /hats etc rather than a wig. But it's great to hear how everyone is getting on and all the tips, ideas and encouragement. So glad I found this forum. Thank you!
@Love running ill let you know how the wig fitting goes! X
@Karden @noodledoodle @Poacher65 @Mai7 Thank you so much for welcoming me to this forum. It feels good to have someone to talk to that goes through the same. Thanks also for the advice on reading, the support and sharing your experience. I hope I will be able to bring you support and tips too in time. We will get through this together.
I am in Stockholm, Sweden. The care is great so far, I can't complain. It went really fast from diagnosis on 22 February until first chemo 3 May and with 2 surgeries in between.
@Karden – I hope it went smooth with the PICC line today. I will get mine tomorrow afternoon. Slightly nervous, but hey if I got through lumpectomies, I should be able to handle it (right?). I got a waterproof sleeve from the hospital pharmacy here, let’s see if it holds. Otherwise, thanks for the tip about Amazon. I will check it out.
@Karden It felt good to read what you wrote about your journey so far, you are positive and it really helps and give me hope.
I went for my first wig testing and fitting this morning. I did not what to expect but was like you positively surprised. First the lady in the store was so knowledgeable (20-year experience helps) and she was so kind to me. I was so nervous and she immediately told me: 'you are not going to buy a wig today, you will try a lot and you will take many pictures and then you go home and check with your kids and husband. Take the week-end to think about it and you call me next week. Don’t rush your choice'. She made it a pleasant and playful moment and I took so many pictures (felt like a model:-)). Like you were saying too, I got surprised about the quality of the hair and the fitting. I had 'toupé' in mind and could see it flying away with the wind (in a Mister Bean kind of moment). But no, they are actually quite nice and comfortable. I showed the pictures tonight to my family and two friends… no agreement. If I listen to them I will need to buy at least 3 of them and to rob a bank to finance them.
@Poacher65 I hope you wig fitting tomorrow will be as pleasant as mine was today.
I have cut my hair short a week ago. Same hair cut than 20 years ago when I met my husband. He loved it then and still loves it now. It made it easier for me to accept the change. My oldest daughter (in her pre-teen) likes the short hair but my youngest (a little princess) not so much. She is more in to very long hair (she wanted a Billy Eillish-like wig, long black and green)
@Love running Welcome to the group, I think you will find lots of support on here.
My first 4 cycles of Chemo finished in Feb but since surgery in March (lymph node removal and lumpectomy) it has been decided that I should have more Chemo starting tomorrow, 4 cycles of FEC, this is why I've joined this group.
I'm having a PICC inserted tomorrow after enjoying being free of it for the last few weeks. At least I know what to expect and it does make it so much easier to have the chemo drugs. Have you got yourself a waterproof sleeve for bathing/showering? I got mine from Amazon as the hospital ones are flimsy and not very watertight.
I chose to have a wig and it has made all the difference in me having the confidence to go out and face people although I don't wear it all the time at home. It's very much like my own hair in colour and style but a few inches shorter. I found that my hair started falling out in handfuls about 10 days after the 1st cycle. I shaved it off as it was falling everywhere and I know it was the right thing to do for me although I found it upsetting as it had taken me ages to get the style and colour just so.
I'd like to recommend a book that was recommended to me and I found it extremely useful. It's written by 2 doctors who have both had BC themselves.
The Complete Guide to Breast Cancer, How to feel empowered and take control, by Professor Trisha Greenhalgh and Dr Liz O'Riordan.
It's got a section on exercise and Liz is a keen runner and was able to keep running.
Bye for now, 🙂🙂
Hi @ Love Running
Nice to hear from you. I have got myself a wig , in anticipation, and was pleasantly surprised at how like my own hair it was. Cannot tell it’s a wig and my hubby didn’t even notice when I can home in it!😂😂
whereabouts are you being treated? The more people there are, the more tips and support we will have to get us all through. I have not seen Oncologist yet, but should start chemo in a couple of weeks, so will benefit from yours and @Poacher65 ’s experience!
I too hope to be able to keep exercising through chemo. I don’t run but love fell walking and have recently taken up Nordic Walking, plus online group classes when the weather not too good.
Take care and good luck. Xx
Hi all May starters,
I hope it is OK that I join this forum as I am not in the UK. I live abroad and get treated there.
I am starting chemo on 3 May: 4 cycles of EC every two weeks followed by 12 weekly paclitaxel. Not really what I had in mind for summer holiday plan;-)
So far so good, I have managed and recovered quite well from two conservative surgeries removing three tumours and two lymph nodes.
I have even been able to train again. I love trail running and I have just came back from an ACL surgery in October 2020 (2020 and 2021 are not really my years on the health front but it is the same for the rest of world with COVID-19). Running in the forest kept me sane the last two months since I got to know that I had BC.
I am hoping that I will somehow be able to run through chemo and I am looking forward to starting chemo, despite being scared. Each passing day will take me closer to the end of it but I am scared because it does not matter how trained and healthy I was before the BC, I don't know how my mind and body will cope with chemo. The list of side effects seemed never ending when I got through it with my nurse. But I try to stay positive and enjoy all the positive moments for now, like spending more time with my kids, cutting my hair short, my first wig fitting ever on Wednesday.
On Thursday, I will get my PICC-line and things will start to be real.
Take care and stay safe
@noodledoodle I hope you have made a good recovery from your surgery. I have some cording but it's improving with daily exercises.
My lymph nodes were clear and I'm told that there is no evidence of them ever having any disease which is positive news. I will finish with radiotherapy too but hopefully just over 5 days. I am on the ROSCO trial which is why I started with 4 cycles of Docetaxel. My tumour was HER2 positive and in addition to chemo I have Herceptin every 3 weeks x 18 cycles which takes me up to early December. I will then have other meds to follow.
I found the members of the December thread really supportive and it's been a huge help in getting through my earlier chemo. I'm looking forward to getting to know you and others as we add our posts. 👍
I have had a WLE and sentinel node was clear but my tumour is triple negative, grade 3, so will need chemotherapy, unfortunately, followed by radiotherapy. Seeing Oncologist on May 5th
That’s great! All tips and help welcomed. Much better timing on the May group, for end of April start. Good luck and I will be joining you soon!
I hope you don't mind me joining this thread as I am starting 4 cycles of FEC chemo on 29th April so May is a better timescale.
I must tell you that I am also on the December 2020 thread as I started 4 cycles of Docetaxel chemo which finished in February. I then had a lumpectomy and sentinel node removal on 25th March.
Unfortunately for me, it has been decided that I need further chemo as the tumour that was removed still had 4mm of residual disease.
I tolerated the first lot of chemo quite well but don't know how FEC will be. I'm hoping it will be no worse than I have already experienced.
Maybe I can contribute some useful tips in exchange for mutual support.
I look forward to hearing from others. x🙂
Have my wig appointment next Thursday as I do like a plan B 🙂
Waiting is hideous ...now feel a little more in control.
Speak soon xxx
Glad your appointment went well. You will do fine I posted on here as I am sure others will be joining before long and Mai17 has posted some really useful advice and links.
The Becca app is great, with some good links to various sites, nutrition, recipes, make up etc
I am not having the cold cap but have some nice headscarves at the ready. Also my daughter persuaded me to go and try wigs and made me an appointment. I thought I would never be confident enough to wear one as you would be able to tell. How wrong I was! It’s fab. It liked so like my own hair, but with lovely subtle tones in, that I left it on and went out for lunch in it! You could give that a go , just in case. You would be pleasantly surprised. Once I had chosen, she cut it in exactly the style of my own. Even I couldn’t tell 😂😂
I bet you feel a bit better now the treatment plan is underway. I think all the waiting at the beginning is the worst. I have a window of 10 days now, so will try and get as many things done as I can!
speak soon xx
Hi and welcome to the May chemo starters.
Im sure others will be along soon.
You can also ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.
Here is the BCN guide on chemo:
Here are some apps which can help to keep you on track:
I finished my chemo in October 2017 and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.
If you’re new to the forum, here’s the “Getting Started” advice:
Hi, just thought I would start a thread to support each other through chemotherapy, whoever is due to start in May.
I have an initial oncology appointment on5th May, so should be starting shortly after. I have been told I will definitely lose my hair, so my daughter persuaded me to look at wigs! I went open minded but didn’t think they were for me and thought I would never be confident enough to go out in one. Wow, was I wrong. It looked so good and so like my own hair, I asked them to leave it on for my day out and lunch. My Hubby didn’t even notice it was not my own hair!! So glad I went.
Hopefully there will be a few May Chemo starters out there to join this thread.