Hi Ladies, delighted to hear you are all doing so well and fantastic news Lorna that you’ve had your surgery at last, I’m so sorry it was delayed but at least everything is moving forward now.
I’m on monthly Zoladex and daily Exemestane, not going to lie Jemmalou the side effects are not pretty, hot flushes, night sweats, bone and joint pain and insomnia, BUT small price to pay for being here and healthy! I’m also on biphosphonate Sally, weekly tablet as my bone scan showed weakening in the lumbar region. Can’t believe this crazy year has gone so fast!! The downside of having hair again is no haircuts during lockdown so I’m sporting a very interesting style 🙈🤣 but it’s all good! Stay safe and healthy 🙏
Hi everyone good to hear how we are doing. It seems incredible it’s almost a year since first lockdown and us going through chemo. I am doing well, I started on Letrozol which gave me awful joint pain so switched to Aromasin but not much different yet. 6 monthly IV infusions biphosphonate. Working 4 days a week and have hair again!
Im 64 so already menopause over, I’m sorry some of you are going through it so early. It’s not a comfortable experience.
Take care and enjoy this Spring, it’s very different to last year 😊🌷
Thanks for checking up, well my reconstruction surgery was delayed because of covid and I finally got my new breast last week. So I can put a line under active treatment. Just hormone treatment now, so joys of hot flushes continues. Otherwise all is well.
hi martina! Can you believe how far we have all come since last year. I am good, I have 4 more targeted therapy’s and then it’s just the hormone tablets and injections. Anyone else on these, just found out am post menopausal ( great at 36!) so they are working just got to deal with the hot flushes!
how are you have you completely finished treatment?
Just wanted to check in to see how everyone is doing a year on from starting the crazy chemo train. It’s definitely been a year none of us could have imagined. Hope everyone is doing good x
am great thank you! Still got my final chemo and Wednesdays and it really can’t come quick enough. Date for surgery all booked for W/C 29th June and I am still getting my targeted therapies ( Pertuzumab and trastuzumab) via PICC every 3 weeks till histology come back from surgery to advise oncology of my next steps treatment wise. Back at the stage were an getting lots of appointment and scans through which is good!
How are you coping on EC? Hoping any side effects are bearable and not too aggressive. When is your last chemo?? Jem xxx
Just wondered how you are getting on ? Hope your last chemo session goes ok and that you have a date for surgery.
Fantastic news Sally that you have reached the end of your chemo.
Hope the side effects soon go and that radiotherapy goes well for you.
Enjoy meeting your new grandaughter how lovely will that be . Something nice and positive after the hard times.
Hope hair growth comes back quickly for you.
Take Care and stay safe
Lots of love
i hope you are all staying safe and well and able to enjoy the nice weather. I had my last Docetaxel on Thursday and the PICC removed - yay!!! It felt like liberation at last. Feeling some side effects today but hoping as dose was reduced it won’t be anything as awful as before.
So my next step is radiotherapy in June x 3 weeks and then Anastrazole. I think it will be Ok compared with chemo. And looking forward to some hair growth, being able to meet my new granddaughter eventually and spending time on my allotment!
What a journey chemo is, but it does come to an end, I wish you all well with yours and thank you for all being here and the great support. It’s just good to know none of us are alone. With love Sally 😘
Thats great news only two treatments to go. If i was you i would ask for an appointment to see your consultant as if its anything like my trust you sometimes have to wait especially maybe in these uncertain times with the virus.
Hopefully when surgery comes around more time has passed for virus to have hopefully eased .
Hope you are keeping well and safe
Love Daisy xxxx
Thanks so much for your reply. I have had quite a few side effects on the last regime so im hoping this one will be easier. Really struggled with indigestion and throat tightness. My EC regime is fortnightly.
Thats good news that yours feels smaller and that it has opened up more options for surgery. Im not sure yet as was down for mastectomy when i first saw surgeon back in January but i suppose thats why they try chemo first to try to shrink tumour to make more options available( but i still wish it was out) . Its just hard all of the waiting and especially when u cant get out the house due to having to do the sheilding. So its difficult to keep mind occupied as cant even go for coffee or see family and friends. Cant wait to be taxi driver to my children again !
Yes i agree i cant wait to ring the bell too and get some kind of normality back . Im so missing going shopping !
I have got some face masks and i wear them when i go for my bloods and to see consultant. He has done consultation over the phone but as im there for bloods he has seen me in person.
Although chemo nurses are great and wear all ppe i make sure i wear my mask and try not to touch anything that i dont need too !
Hope you are keeping well and safe .
Hi Daisy, Side effects on EC were fatigue, constipation and joint pains. For the 10days after would feel like I was hungover (hungry and tired!) Also found eating little and often would help as just couldn’t manage a big meal. But honestly it wasn’t as bad as I thought. I was definitely expecting to be a lot worst! I have got 4 left, provisional finish date is 27th May and then surgery hopefully end of June.
That’s great that you have had a good reaction to taxol, mine had definitely gone smaller since last MRI but can still feel it but anything is a bonus ! It’s opened up surgery options as to begin with I was down for mastectomy but now lumpectomy is a option 🎉🎉. mine didn’t look like it was in my nodes and biopsy came back clear so again hopefully that’s the same, but will have to wait and see. It’s such a waiting game, constantly waiting on results or appointments I’ll be glad when I finally ring that bell to say am all clear!
This virus is horrendous, can’t wait to see the back of it! I haven’t been wearing masks but ordered some so think am going to start, my nerves are gone!!
Jem xx 😘🌈
Good afternoon ladies
I hope you are all well and safe. I am due to finish my Docetaxol on 09/06, two more time go and after Double Mastectomy as I have Bilateral Breast Cancer. I am just looking for some advice as at the moment I only have consultation call regarding chemotherapy. Shall I ask my oncologist to organise a consultation with the surgeon as the chemotherapy is ending soon?
Thanks for replying and pleased that the EC treatment had great results for you. Did u get many Side Effects ?
I had a ultrasound 2 weeks ago and had good results from Pacitaxel and carboplatin regime. Tumour had shrunk from 4.6 to 2.6cm . No changes to the 2 nodes under my arm so hopefully the EC will reduce that.
I havent had any surgery yet but like you i cant wait although nervous i just want it out of me if that makes sense. I havent had appt with breast surgeon yet so not sure of what surgery i will be needing. Im also waiting for results of gene testing too. Such a lot of waiting isnt there ! Doesnt help with the virus too. Glad you havent missed any cycles. I have missed three chemos 2 due to low bloods and one to to high bloods .
I hope your appt is to discuss dates etc . How long have you got left till you finish chemo ?
Love Daisy xxxx
hi daisy, I had a MRI after my EC and had great results from it. Not noticed much change with the taxol but am having a ultrasound tomorrow to check the progress and to start planning my surgery which is due end of June.
Hoping everything is still going ahead as previously discussed, my BCN said everything is still ok but am worried as they have brought this apt forward from the end of the month so am worrying they are going to tell me it’s postponed. Am down to have a therapeutic mammoplasty and was agreed to do both breast at the same time, and that’s the part I think will change and will only do the one 😢😢
Have you had your surgery yet? I want the surgery ASAP it really can’t come quick enough , luckily up to now I haven’t missed any cycles yet so that’s a plus.
Jem 🌈🌈 xxx
Congratulations Sally on your Grandaughter. What lovely news !
Good luck on your radiotherapy after chemo im sure it will be much easier .i bet you are so pleased to be coming to the end of this treatment regime.
Yes i agree it does feel like a double blow especially when people are moaning just having to stay inside when they feel well . I find i cant watch the news now if people are mianing as makes me cross !
Take Care . Stay strong and stay safe too
Love Daisy xxx
I really hope your WBC goes up too and the EC goes well for you.
After my last chemo I will start radiotherapy x 3 weeks in June and finally Anastrazole (I am oestrogen positive) for 5 years.
i am expecting all that follows to be easier than chemotherapy so that when the restrictions are eased I can be with my newborn granddaughter, arrived last Wednesday! It constantly feels to me that we cancer patients have double and even triple whammy with Covid19, we have to stay so strong. Stay safe, stay well, stay strong all of you. 🌈❤️🙏xx
Thank you so much for your reply and for all the information. Sometimes it just feels so overwhelming with everything thats going on.
Im hoping my WBC will have increased on Monday so i can start the EC on Wednesday.
I hope your last round of docetaxel is kind to you and the end of the road is in sight . Do u need any further input after Chemo?
yes the wbc thing is horrible, mine dropped to 0.5 so I developed neutropenic sepsis but that’s all over now thank goodness!! I had my surgery in November so in that way I am fortunate, it’s done. At least you know your tumour has reduced in size, that must be a relief. Mine turned out to be twice the size they thought it was (I had lobular cancer) which was a scary thought post surgery.
for EC i was given dexamethasone, odenastron and domperidone. They are all supposed to control nausea and vomiting in different ways. I didn’t vomit at all but my nausea was never completely controlled. They are also very constipating so have something ready for that! I lost all my hair after 2nd round of EC butI didn’t use the cold cap so just hoping that my hair will grow back after last round of Docetaxel. It seems everyone reacts differently, you may not have the nausea, I hope you don’t! Good luck with it all, and thinking of you. 🌈🙏
Thank you so much Jem for replying and not long now till end of this chemo. I will be so glad to get to the surgery stage.
Apparently im having EC every 2 weeks for 2 cycles then rescan .
Did u have a scan after your EC treatment ?
While i have had lots of side effects from pacitaxel and carboplatin such as low white blood counts meaning i have missed 3 treatments . It had shrank the tumour by half . The lymph nodes are stated stable no changes so hoping the EC will shrink those too.
Are you awaiting surgery too ?
Take care and stay safe
hi Daisy, my treatment was opposite to you I had EC first and have just got 4 weekly Paclitaxel left.
I’ll be honest I found EC a lot harder than the taxol, but i have been great on taxol thou and had really minimal side effects (apart from nosebleeds) But on EC I had really bad fatigue, muscle aches and stomach issues (constipated) but didn’t have any sickness. It really hurt my veins too, ended up getting PICC as the pain was unbearable when moving my arms and stretching but I have crappy veins. I always said the 1st 10days after EC felt like a hangover constantly hungry and tired. I just made sure I drank honey and lemon every morning , plenty of water (or juice) and have paracetamol for the joint pains. Plus I lost my hair on EC but it’s going back on taxol, day 15 from 1st cycle was when I came out.
Sending you lots of luck for these next steps, glad to see everyone is coming close to the end of our chemo journey, what a quick 4 months that’s been! Onwards and upwards 🌈🌈🌈Jem xx
Thank you for replying .so glad u are having your last treatment. Have u had surgery previously sorry i couldnt remember.
Like you have done i am currently experiencing problems with my WBC . I have had chemo cancelled for the last 2 last sessions of the paclitaxel due to count being first two high ( due to filgrastim injections) then dropped to low. I have had lots of side effects with the treatment currently an awful tightness in throat such a uncomfortable sensation.
Could i ask what medication did u have following the EC Treatment ?
Hope you are managing ok with the isolation. Its just such strange times but hopefully if everyone takes notice of current advice we will soon be able to get together with our family and friends.
Love Daisy xxx
i started my chemo on EC and found it better than Docetaxel. It did cause nausea, even with the anti sickness medication. But like others I found snacks easier than proper meals, especially savoury or salty things like soups or toast and marmite. Fizzy water, flavoured with lemon/lime was good, extra strong mints, mint tea. Ordinary tea and coffee was horrible! Took about 7 days for the main effects to pass but lingered for longer. For me Docetaxel has been much worse, last one on 7th May and removal of the PICC! Can’t wait to get rid of it.
stay safe everyone, we still have a while of isolation to go ......🌈x
Happy 40th Catd2504! Not exactly the best way to celebrate hitting the 4.0. but hopefully there will be plenty of celebrations when you’re feeling better. I finished chemo 6 weeks ago, unfortunately earlier than expected as my last two sessions were cancelled thanks to corona. Don’t know if that made an impact on the hair regrowth but I’m really surprised how well it’s coming on. It’s still more a kinda fuzz than hair but I’ve got some kind of covering on most of my head (still a bit of the crown playing catch-up) and definitely a few more hairs on the eyebrows. I know it probably doesn’t sound a lot but I had literally nothing 6 weeks ago and thought it would be a few months before I saw anything so I’m very surprised. Hopefully you won’t have to wait too long to see some improvement!
Thank you so much Lorna for your promt reply and all of the tips im most grateful. Just always feel nervous starting new regime . Just cant wait till its all over then surgery can be done.
Hope you are keeping well.
I found this EC a lot harder than taxol, the taste buds will go, the nausea is much worse, make sure u have lemons, ginger, lots of fresh fruit/ smoothies, fizzy water, and nausea beating sweets/mints. I found it a little like morning sickness I felt better eating often. You will be on steroids which may keep u awake or be alert in the middle of the night. Just listen to your body. Good luck.
Congratulations to everyone who has finished their chemo.
Im just about to start the EC treatment following the 12 paclitaxel and carboplatin. I have had many side effects with this and just wondered if any tips for the EC treatment.
Love Daisy xx
Hope you’re all keeping well and continuing with treatments as best as possible?
I’ve had a bit of a rollercoaster few days - I had my 40th birthday on Saturday, my beloved dog was put to sleep on Sunday and I had my final chemo yesterday!!! So I think I’ve been through most emotions in these last five days!!!
I was just wondering if anyone has finished chemo already whether you had any rough ideas of a timescale for hair, lashes, eyebrows etc to begin growing back?? I did cold cap for all 6 cycles but have probably lost a good 40% coverage so keen to know. Plus it’s still shedding so would be nice to have an idea when that may stop? Has any been given any advice from their team about this?
Thanks very much guys xxx
Fantastic Lorna! Having had my surgery first I would say completing chemo means you are over the worst part. Wishing you well for your surgery in a few weeks, hope you don’t feel too bad after your last chemo.
with love Sally
Update, chemo done whoop.
I spoke today again with my surgeon and breast nurse to aliviate my worries and still on track for mastectomy within 6 weeks and before this we will discuss the options for this surgery to get a later reconstruction.
Hope home learning went okay today.
🎉🎉🎉 congratulations getting to the final chemo Lorna! 🎉🎉🎉 it’s a huge milestone and a big tick on the treatment front!! I have got 6 weeks left and have never wanted to wish 6 weeks of my life away as much as now! I feel your pain about surgery, mine is planned to go ahead in June (end of the month) but next meeting with Breast consultant is May so not holding my breath that it will go ahead as planned. Will you still have the initial surgery now and then have reconstruction at a later date?? Am down to have a therapeutic mammoplasty in June and just hoping this can all still go ahead as planned, meant to be removing the BC from the right but also reducing both breast at the same time.
i feel your pain with looking after the kids same time as going through treatment, they are hard work, mine are 3, 7 and 10 and would you believe the 10yo is the hardest!! My husband is still working from home (and he’s so busy!) and PICC line and chemo days (am weekly) are long and hard to juggle with kids not being at childminder and school and not being able to rely on family. Your not alone feeling emotionally exhausted with it all!!
We are back to home learning from today and done our PE with Joe (I cant move!) and now about to start some sheets school have sent home .... am trying to keep it relaxed and not enforce too many schedules it’s hard for the kids too!
Your not alone we are all winging it through this pandemic and keep your chin up your getting closer to the end point! 🌈 🌈 jem xxx
Really nice to hear how you are getting on. Lorna last chemo 🎉👍 definitely something to celebrate! I’m really sorry but I can’t remember if you have already had surgery and it’s just the reconstruction that has been postponed- I’m hoping that is the case! In these strange times I’m just hoping everyone’s treatments are carrying on, my doctor insists that even at a slightly reduced dose the treatments will still work so 🤞. Sally I’ve got that horrible taste in my mouth too and am looking forward to food tasting normal again. I really hope your side effects are minimal this time and you can sit in the garden and enjoy some sunshine!
much love to all x
good luck for today, good to get the chemo completed but sorry to hear the surgery is on hold, that must be difficult. I am going through the effects now of Docetaxel last Thursday, I feel as though I don’t have an iota of energy, dry mouth and horrid taste and body aches. I am very alert to the neutropenia I had last time and frightened of being in hospital again, but hopefully it won’t be as severe on the reduced dose. I am full of admiration for you and the other mums going through all this and looking after your children, you are all amazing women! ❤️
So I'm on my last chemo Monday yay! So things have changed, in that there will be no reconstructions even in private sector for the next 3 months. My hospital is private has been taken over by the nhs so my surgery is up in the air on when and where it will happen. My oncologists said I should isolate until 12 weeks post last chemo in this current climate as it's my lymphocytes that are down and will take longer to recover.
So I'm all a bit emotional and stressed.
I'm loving time with my kids 1 and 3 but it's such hard work. Xx
Hi how is everyone doing now we move into another 3 weeks of lockdown? Another 9 weeks or so for us! I just suddenly found that really hard tonight, isolation until June 15th, feels tough. I had my reduced dose of Docetaxel yesterday (5th cycle), I was very anxious following the last episode of neutropenic sepsis but the chemo nurse was really lovely, explained everything and so far side effects have been quite low level, just waiting to see if anything changes once the dexamethasone has worn off.
I have a full 1 hour telephone assessment with consultant on 27/4 that will mean I can ask him all my questions about next steps, I feel relieved about that. I hope you are all having good communication about treatment and the reassurances you need, I have found the breast care nurse to be so supportive and helpful, I hope you have access to yours.
Have a good weekend, even if a little rainy! Take care, stay safe 🌈❤️Xx
thanks for update, I have registered but my GP hadn’t updated my r3cords to say I had cancer and going through chemo, so my credentials are being questioned! As if having cancer and chemo isn’t bad enough I am now trying to educate the GP!
Luckily my son has done some shopping but I haven’t had any other information. However I did find that the charity Breast Cancer Haven is running some yoga and Qi Gong classes via Zoom which are really good, so I am getting some exercise.
Just find trying to keep safe from the virus on top of everything else difficult, especially in this lovely weather.
take care everyone, Sunnybear
I have also had 4 EC chemos and was due to have a mammogram/ultrasound on 26th March to check progress but this has since been postponed till 16th April. I’ve been worried as my breast lump doesn’t feel any smaller so far.
I had my first of four Docetaxol and Herceptin yesterday so keeping my fingers crossed that they do start to shrink the tumour.
Best to luck to you and everyone here on this journey Xx
I think you definitely need to speak to your oncologist who will hopefully put your mind at rest. But I just wanted to say that stable and no changes does not mean it isn't working. The fact that your cancer hasn't progressed is a good sign. Some chemos are intended to stop cancer spreading/ stabilise existing tumours and other types of chemo are more targetted to shrink tumours. I started with 3 rounds of EC and at the end of that my situation was similar to yours. My oncologist was pleased as said the cancer hadn't grown and now I'm on taxol which is hopefully reducing the tumours. Obviously every case is different but I hope this has given you some hope xxx
Good evening ladies or very early morning as is 0:26 am and I can’t sleep. I am really worried and hunting for ladies opinions, feedbacks, knowledge. I had 4 cycles of AC chemotherapy and half way breast mri to check if the chemotherapy is working for me. I haven’t seen my oncologist yet as my next appointment will be on 27/04, however my GP doctor read the report to me
todaynover the phone. He used the word “no changes” and also “stable”. After I asked him to explain
further, however bless him, he could not answer as he is not an oncologist. I am
herv2 negative and Other two positive.
my question do you ladies think
that still can be curable even though the chemotherapy is not working for me?
just sad, upset and can’t atop
yeah furns85 they sent me a email out of the blue, I was already registered on Asda.com as I have online shopped before, so I don’t know if it’s worth Registering online with your chosen shop?
Asda said I would also hear from other shops but not heard anything from any other shop.
my husband is also working from home, but with 3 children and a dog we are all getting a bit of cabin fever. But 12 weeks is nothing in the grand scheme of thing, just hope it’s not extended.
Sally63 some gentle exercise in the garden sounds like a great idea, I might need to get my gardening gloves back outback once I get past these crappy post treatment days..hopefully the fog lifts tomorrow.
i can’t tell if my treatment is changing because of the virus yet. My scan results were good so last week was my last treatment (no4, the oncologist always said 4 but maybe up to 6). I directly asked her if I would be having more if it wasn’t for the virus and she said no so I am trying to trust that but it’s hard. I might need another if they can’t get a date for the op, I’m desperate to get the next step done 🙁
they said it’s undecided if a need radiotherapy and that it will depend on the results from the lump- is that normal? But she also said they are looking at the radiotherapy policy in light of the virus and basically will only get that if I really need it (surely that was always the case?!) so a lot feels up in the air and I’m feeling down about it but I’m telling myself I always feel emotionally on these days and I should just focus on the positives from last week
how did you get notified when you had a priority pass for deliveries? I’ve registered twice now and tried ringing the supermarket number and not got anywhere yet. I luckily got a delivery slot a few weeks back for tonight and my partner went to the early a morning slot last week with my letter and they let him in early so there were even less people there. I know it’s hard for him too as he’ll have to socially distance for 12 wks which will be hard for work but they are being good (for now).
Sending love and hugs xxx
What a weekend of isolation, it really is such a double whammy for us, even a triple whammy for those who are now not sure about their treatment. I found some distraction and energy in using my exercise bike in the garden (lucky to have both I know) and just gently peddling in the sunshine with my headphones on took me away from chemo and all the trauma of the past 2 weeks. I recommend it if you have access to one!
Otherwise I remain in the house, mainly in my room with my husband bringing meals and talking across the room, another 10 weeks feels hard but I have decided to take each day at a time and not to think about it as 10 weeks. We can only hope upon hope that people out there will continue to follow the rules and stay at home. I have not yet received any priority shopping slot from my local store despite registering, perhaps it will come this week. Have others? It will make a difference to my husband shopping which even if only occasionally I would rather he didnt.
Regarding treatment I seem to be OK. I had my mastectomy back in November (without reconstruction) - that seems a lifetime ago when I thought chemo would be horrible but not as awful as it has been and radiotherapy a walk in the park. Now despite the horrors for me of Docetaxel (and it might not be like that for everyone) I am actually relieved that my treatment will continue albeit with 1 weeks postponement. Which means that in one month from today I will have my final chemo and the PICC will be removed, that feels like liberation! I will still need radiotherapy and hormone treatment, and bisophosphonate for the bones, but all of that feels manageable by comparison with chemotherapy. So whilst for me it feels like a light at the end of the tunnel (and there are still things that could change on the way) I do recognise that for many women there remains uncertainty about treatment schedule, efficacy of treatment so far, when you will have your surgery etc. alongside managing quarantine, looking after children and the impact of loss of work and everything. We are in the hardest of times imagineable, but none of us are alone and sharing our difficulties through this forum will help us to reach a new place. With love and hugs, Sally x
Am so sorry to hear so many of you are having plans changed (tweaked) it must be such a stressful time, and possibly the worst time for us to be receiving chemo. Am normally a really positive person, even after being diagnosed but even I have struggled the last week. Think it’s a build up of anxiety and the fear has set in that am a vulnerable person. I wish people would just listen to the goverment advice, the sooner people stay in the sooner we’ll all be allowed back out!
I got my priority pass through from Asda and have set up free weekly deliveries from next Saturday so least I don’t need to send hubby out for shopping anymore which is a relief! If you’ve not applied go onto link below and register they then pass your details to the local supermarkets.
I feeling quite lucky at the moment, oncologist is happy for my treatment to continue as planned with my final 8 before surgery (taxol, herceptin and Pertuzumab) so fingers crossed it all goes to plan. Also great that chemo is having a good effect on BC and no longer need a mastectomy (thank god as seen lots of women have had the reconstruction part cancelled and don’t know how I would cope) just got to see if my surgery goes as planned for end of June. 🤞🏼🤞🏼
keep strong and safe ladies Jem 🌈🌈🌈
I am on a younger group for breast cancer on Facebook too and there are a lot of posts on there about treatment cut short, changing treatment to begin with mastectomy then radiotherapy then chemo, and even delays to treatment. And it's not just breast cancer it's a cross the board. It's a scary time to be having treatment. I think that they are doing it in a case by case basis. I'm lucky that my treatment is continuing and only because I was able to go private with my work.
So I'm back in today for treatment number 7. Shocked how much hair was still hanging onto my head until today. So now I'm all emotional, but at least it got this far.
Keep safe xx