Breast Cancer Care Forum

How lovely are your in laws being there for you and your family, you are very lucky. It’s only 3 weeks and sure it will fly by! I know a lady from my unit going for radio and they had evening appointments (she went at 6pm) so maybe that could be a option and your husband could work early and finish early for you or even grandparents can watch them in the garden for you as long as the weather Holds our and continues to be lovely. Everyone I have spoken to have said it’s a breeze especially after chemo and your surgery so I’ll be thinking of you.  Met with breast consultant and my surgery is getting split into two, 1st to take out the BC and sential node, and then 2-3 weeks later after histology and fingers crossed clear margins going to do the reconstruction part (LICAP, using my fat from my back but not the muscle and thanks to lockdown their is plenty there 😂 😂 ) I think everything is starting to go back to normal , think masks and gloves will remain in place for consultations until a vaccine is available but that’s ok with me it hasn’t changed the care I have received. Jem 🌈 🥰 xxx ... View more

Awwww ladies look how far we have all come since the beginning of the year. So happy that you are coping with EC lilyb84 and handling it like a boss, the end is nearly there. I finished my last chemo today 🎉 🍾 and have had a very emotional and overwhelming day, been on a rollercoaster and cried all day! Littlest thing setting me off and am normally not emotional. I rang the celebration bell in the hospital with all the nurses and they allowed my husband to come into to watch me.  It’s a great feeling once you finish a stage! Onward to surgery for me at the end of June. Sending you lots of love and hugs for these final few chemo , you can do it!! lefteye84 so proud that your moving onto radio! You’ll smash it like chemo and at least the roads are a bit quieter so the journey won’t be as gruelling, download a couple of good albums and enjoy the peace. So happy that you are now recovering from your surgery, it was such a major surgery and your body is just taking it’s time to recover, this will all be a distance memory soon enough!  Shablah as so sorry to hear that some of your appointments have been cancelled, I have been lucky and just had a couple of telephone conversations with my oncologist but still going into see my breast consultant to plan the surgery  think we will start to see things go back to normal my chemo unit said they are slowly getting back to full capacity too!    thinking of you all in your next steps , so glad we formed this little group as o love hearing all your updates 🌈 🎉   jem xx   ... View more

Hi Daisy, 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 ... View more

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 😘 🌈 ... View more

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 ... View more

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 ... View more

Lilyb84 great news about the shrinkage, EC is great for results!! Am currently on  trastuzumab and pertuzumab too and the first time you have them you have to have them over 1hr and 1.5 hours (I was in the hospital for 6hours the first week so take lots of snacks!) but after that they give them quicker but still on my triple week I can be in the hospital for 4-5 hours so just a heads up!   i got my priority slot at the Asda and it lets me reoccurs it every week so we have a sat morning delivery which had been a gods send, and hubby only goes the little Londis for bread and milk and bits that we need.    jem xxx ... View more

so happy that it turned out to be scar tissue, think after going through this any lump or bump and we’ll all be at the doctors! Defo makes you realise to be extra vigilant with our health!  The Side effects on taxol has been really minimal (mouth ulcers and nose bleeding) being main ones and these are not constantly and easy to treat. My hair is even growing back on taxol, such a small thing but massive in my world as losing hair had to be the lowest point of all the treatment , just won’t be able to get a appointment in hairdressers when i need it coloured and cut due to the whole of the UK trying to get appointments!   Before moving onto taxol I had good shrinkage from EC (from 6cm to 2cm) and since on taxol and my hormone therapy it’s feels like it’s gone even smaller but hoping my oncologist will confirm on Wednesday (mine is telephone call not going into hospital) that I’ll be having another MRI within the next couple of weeks to confirm the actual size before am back to see breast consultant.   Surgery is provisionally booked for end of June at the moment, and hoping that it all still goes to plan, spoke to BCN and she confirmed still down to go ahead at the minute but am not holding my breath! Same about going for appointments, I have my PICC and bloods done every Tuesday and chemo every Wednesday, it’s like a day trip leaving the house and making a effect! 😂 😂   Take care all, keep positive... we can do this! 🌈 🌈 🌈 and enjoy the sun! How funny since being in lockdown we’ve had the best weather in March / April ☀️ ☀️ ☀️ Xxx ... View more

Hi shablah... thanks for checking in! Hope you are well too?? My chemo hasn’t been effected up to now and I have got 6 more weeks left (am wishing them away!) but am struggling emotionally with not being able to meet with friends and family for coffee or popping into the shops for bits. This part of lockdown (social distancing) is unbearable and feel for my kids too who are also self isolating with me for 12 weeks and have been out of our house twice in 4 weeks (on a bike ride as they where going crazy) thank god we have a garden but they are missing their nannies, grandads and cousins.  We will get back to normal soon enough , and sending everyone lots of positive vibes 🌈 🌈 🌈 jem xxx     ... View more

🎉 🎉 🎉 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 ... View more

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.  xxx ... View more

Hi ladies.... just checking in and hoping you are all well!! It’s such worrying times but wanted to say your not alone, and we will all get through this **bleep** storm together.  hope everyone’s treatments are going to plan, glad mine hasn’t been altered up to now but seen lots of women’s have 🤞🏼 🤞🏼 Jem 🌈 🌈 🌈 xxx   ... View more

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.  https://www.gov.uk/coronavirus-extremely-vulnerable   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 🌈 🌈 🌈   ... View more

Hi furns85 am currently on paxitaxol round 4 of 12 due this Wednesday (weekly) and has really minimal side effects. Before I was on EC (3 x every 3 weeks) and really struggled with major fatigue but that’s vanished and I have been great on taxol. Only current symptoms is dry skin (hands and arms) and nose bleeds. I spoke to my oncologist and she’s happy for me to continue for the time being as she said taxol doesn’t tent to suppress the immune as much as other types of chemo. I have 8 more after Wednesday and just want to see the back of chemo! Its also very worrying as I work in the hospital where I get my treatment and found out that 2 receptionist have tested positive for covid so dreading going in to get PICC and treatment. I avoid everyone, eating honey and vitamins by the bucketloads to try help my immune.  it’s horrendous being house bound, even more so keeping my boys in (we aren’t even going out for walks or bike rides) luckily we have a garden with lots to entertain them with. It’s killing me as we are normally such a active family and always out and about even with going through chemo and we are all climbing the walls!  stay safe all, I found if you log on Asda around 7.30am you should get a shopping slot (I have one for 7th April and 14th April) so hubby only went out today for our shop and hopefully he can now stay at home. Xxx ... View more

I decided today to keep my boys off school from today. They are shutting Friday, but we are all well and I just don’t want to risk one of them catching a cough and temp and it delays my weekly treatment by 2 weeks which is such a big space in time. So we are self isolating (and I am currently a KS1 and KS2 teacher 😩 ) and we are just taking dog on early walks and sending hubby to shops (being on chemo doesn’t seem too bad considering I don’t have to brave the shops!!)   I have had to miss my brothers 30th celebrations this weekend, and also Mother’s Day celebrations with family but just keep telling myself it’s only temporary and we can celebrate at the end of the year.  Everyone stay safe, just be extra careful.   My plastic surgeon and chemo nurses both advised me and family to self isolate between my weekly chemo and they scared me (think I wasn’t taking it serious enough tbh) even my husband is working from home because am high risk, luckily with his job he can so will still be getting paid. It’s such uncertain times xxx ... View more

Oh wow 15 hours, that’s a long surgery. The node full clearance definitely would have added time onto the surgery but that’s still very long! Am so sorry to hear you have had complications after surgery too! Hopefully your now passed the worst and you’ll be home soon enough! Your surgeon sounded like he knew what he was doing and was definitely the right decision to make sure the flap was attached could have been a lot worst if it didn’t take once your surgery was done! Can’t have been nice having to go back down to surgery thou, and even having the saroma. I know another lady who had this and her consultant waited a week before draining she was in agony.   Bet your itching to get home in your own bed!! Have to admit this was one of my main concerns in the debate of mastectomy vs breast conservation, my boys are still young, with my youngest being 3, I can’t even go the shops without him fretting for me. He would be lost if I was away for 2 weeks especially in the current climate when they are not letting under 16’s onto wards.    Am glad to say the decision has been taken away from me. I meet with the plastic surgeons on Wednesday and they are happy with the progress with the chemo and the Shrinkage of the tumour, and the surgery options that have been opened for me. She was lovely and actually said you wouldn’t cut your arm off if you had a sore finger and less invasive surgery options were available. So I am going down the route of breast conservative either with LICAP or therapeutic reduction. So just this decision to make within the next two weeks. And if I don’t like the outcome of this procedure I can always be referred back to her and she will do a mastectomy with the DEIP so I know down the line this is still a option for me or god forbids i get a local reoccurrence.  Onwards and upwards for you.... will you need radiotherapy?xxx ... View more

Awww Lorna, that must have been a tough decision to take the cap off, but keeping your hair is not as important as your health and if it was making you sick you definitely made the right decision. Four and a half hours is a long time to sit with the cold cap on, don’t think I could have done that! As quick as the hair comes out it will grow back (fingers crossed a lot healthier too)    I am expecting the fatigue to stay into this round too, will have to try and get some paracetamol in for the aches and pains.  Any reduction is good at this stage, shows that it’s working and you are only half way through. Hopefully this intense couple of rounds will reduce it, keep positive xxx ... View more

Good luck for today LornaJ , definitely keep me posted on how your feeling and fingers crossed the sickness eases for you, it just shocked me looking at the side effect list as my nurses have all said taxol should be a breeze after EC and I coped really well on EC.   My hair didn’t last into the 1st round of EC even with cold capping so hair loss isn’t really a issue for me plus I got my eyebrows microbladded before I started chemo but like you I have noticed this weekend that my eyelashes are defo thinning and not as long as they used to be but don’t seem to be losing it from my legs thou 😂 they still need shaving!  Sending you lots of positive vibes for this next round of treatment. 🌈 ✨ jem xx       ... View more

Hey lefteye84 just checking in to see how you are following your surgery last week. Hope all went to plan and your now recovering at home.  would love to heard your experience once your up to it I have to make the decision of mastectomy with DIEP like yourself or therapeutic mammaplasty (breast reduction) and keen to hear your experience.  Sending you lots of love for a speedy recovery! Jem xxx 🌈 ✨ ... View more

Hi ladies .... So i am now finished with EC ( 🎉 🎉 ) and moving onto paclitaxel (Taxol) this Wednesday for weekly treatment for 12 weeks and just wanting to know if anyone had had this type of chemo yet and did you experience any major side effects.   Looking at the information my oncologist gave me the list of side effects seem a lot more than when I was on EC , and I was lucky on EC as I didn’t suffer any major side effects, just fatigue and couple of stomach issues.  Any tips would be appreciated for this next step of my journey. Jem xxx ... View more