I’ve been given an appt but it’s on the same date and time as my next Trastuzumab injection so I’ll have to ring up today and go through it all again.
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Thank you just had number 4 on friday just trying not to have to many wobbles, my legs are aching and my mouth is bothering me but its just dry. I keep telling myself i will be finished next month 
hope you are well xxx
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I’ve noticed you have asked about levels in lymph nodes and many of us haven’t heard of it.
I found this from May2024, I believe they are still active on the forum so you could post on the thread.
It might also be a good idea to call the BCN nurses to talk it through 0808 800 6000 Mon - Fri 9-4 Sat 9-1
Hope it helps 
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@hlc are you on zoledronic acid? If so you probably won’t have a scan as they will say they are treating you already. That’s what I was told. I asked for a baseline scan and was told no, not protocol in this trust. Probably just about money.
@naughty_boob . Ive had one dose of zoledronic acid midway through my chemotherapy. Think ill continue with 6 monthly infusions for 3 years
Hi everyone,
I was recommended by @naughty_boob to join this group and thought I should introduce myself after today’s meeting with my oncologist to finalise my chemotherapy plan.
I’m 36 and a mum to a seven-year-old. I was diagnosed in early January with triple-positive breast cancer (ER+, PR+, HER2+), with two tumours next to each other, totalling 34mm. A PET scan picked up a questionable 4mm involvement in the most inferior lymph node (still waiting for the results), but my oncologist assured me today that this won’t change the chemo plan.
I’ve been told I’ll have EC chemotherapy (Epirubicin + Cyclophosphamide) every two weeks for four cycles. The oncologist used the term “dose-dense,” which completely freaked me out and sent my mind spiralling about potential side effects. After that, I’ll have Docetaxel (every three weeks) and Phesgo. The full course will take 20 weeks, followed by a likely mastectomy. I’m feeling quite scared at the moment. My oncologist seems to think this is manageable, but when I looked up Epirubicin + Cyclophosphamide, I saw it’s sometimes called the “red devil”—which has only made me more anxious (forgive me if I’m panicking over unreliable internet information!). I’d be so grateful to hear from anyone who has been through a similar chemo regime, particularly with young children around, would it be doable when you still want to cook some simple meals for them, help with homework, put them to bed, etc.
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Hi @jan30 and welcome to the group. I’m so pleased you are here.
I didn’t have EC so can’t comment. I remember reading on the chemo starters group it’s called the Red Devil because it’s bright red in colour and it can turn your wee red as it passes through your system.
I found reading through one or two chemo starters threads to get a gist of the treatment and side effects of your treatment.
I’m sure others will welcome you soon and be able to answer your question.
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Hi @jan30 - I was diagnosed in May 24. I was 38 and have 2 kids, aged 7 and 5 at the time. I am HER2+ and hormone negative but I had 3 doses of EC (1 every 2 weeks) and then 9 doses of paclitaxel as my NHS trust doesn’t do doxetaxel. Everyone copes with the chemo side effects differently so you won’t know how you feel until you’ve had it. But for me, I found the EC quite tough but do-able. I was sick after my first dose so they had to change my antisickess drugs. And my white blood cells dropped too low after my first dose so my second dose was delayed by a week. In terms of other side effects, it caused my blood pressure to go low so I was quite dizzy a lot of the time, I was also tired and had no appetite. When I did eat, everything tasted like cardboard which was nauseating. The best way for me to describe is is like a very very bad hangover which lasts for days. Chemo is cumulative aswell, so it took me about 5 days to feel better after dose 1, then longer after dose 2 and longer again after dose 3. I was still able to enjoy doing little things with my kids including making teas, helping with homework, doing bedtimes etc. My tumor was 5cm at diagnosis and had shrunk to 4mm by my 10th chemo dose, so whilst it is tough, it is worth it. Try not to read too much on Google as a lot people will post the horror stories and they may not be representative. Defo worth asking on here and hopefully getting a more balanced response. You’ve got this 
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Hi @jan30 like you I’m triple positive.
I have had two lots of EC so far, and once I’ve had my fourth, will go on to paclitaxel x 12 and phesgo.
You’re right they call it the Red Devil but I doubt it’s because it’s any worse than any other chemo. It’s red in the syringe, and makes your wee red straight after so guess that is more the reason.
I have mine every three weeks as have gastro and liver issues so need to be careful of those, but the ‘dose-dense’ purely means the cycle is shorter I think (so 2 weeks for you).
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Hi all, so sorry for my worried ramblings but I think the waiting for treatment has finally got to me. I am 46 and recently diagnosed at the beginning of Jan with BC Her2+ and oestrogen +. Sorry not good with all the BC lingo yet. I have been reading many of your posts and it seems that most people in a similar situation have had chemo before surgery. However, I have been told that I will be having surgery (lumpectomy) before chemo. I am so confused as I have two grade 3 lumps, one 18mm and one 16mm, with a large area of calcification which equates to 67mm. I haven’t had any scans other than the mammogram and US. This is quite a large area and I understand often much bigger than what shows on the mammogram, once it’s been removed. Also worried that it is much bigger now anyway as it has been over two months since I found the lumps. I am really concerned that I am not having chemo first or being offered a mastectomy. I am due to have surgery with sentinel node biopsies next week, which at this stage I am fully expecting them to come back with C in them. How do they know chemo will work post op if there is nothing they can measure against which pre op you can see the BC shrinking? Sorry so worried as grade 3 Her2 and feel so completely lost by it all.
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@sms well done for arguing your case, that can be really hard to do, but glad you got your test. All the best with the next bit. I’m a bit slow replying as I spent the morning waiting my theatre slot for 2nd attempt at WLE to clear one margin that they didn’t get first time. Back home and feel fine. Don’t get results till end of this month so chemo likely to be March. Am HER 2 +ve so I’m following your posts to get some idea what to expect and ways to cope. Always read this with my notebook handy to take down all your excellent hints
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@carrie5 I am glad to know you are back home and feel fine. Continue to rest, hydrate and for sure do the exercises that the nurses have suggested, they actually help in faster recovery. I am glad the sharing of experiences here is helping you in some manner 
After the Kadcyla infusion, the predominant SE has been extreme fatigue, a bit of constipation, which honestly is also a cumulative effect from so many months of grueling chemo, surgery and everything else. It takes time to wrap your head around the fact that 8-9 more months of chemo “lite” is still on the cards but taking each day as it comes is the only way. Humans are more resilient than they beleive they are. There is light at the end of the tunnel always! Sending healing vibes and thoughts your way!
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Hi @bearcat1 I identify with a lot of what you say. I finished 18 doses of Phesgo in Oct 24 being ER + too I was put on letrozole but it turned out to be that which was messing with my stomach most. Now I’m on anastrozole which seems better in that regard, but overall, I still have a long way to go to put treatment properly behind me. Like @naughty_boob I’m still on 6-monthly zolendronic acid infusions. 2 down and 4 to go. My children are adult and have left home but I am very much a carer for my husband as well as full time working. My Dad too, is 91 and at the opposite end of the country. Overall this phase for me is more difficult than the treatment phase.
Know you are not alone 
.
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Hi @sunflower9 If it helps Im surgery first chemo second. I’m HER2 and O+ and Grade3, although 1 lump not 2. Can’t entirely answer your question but I see the surgery as being an important part of the treatment even though of course it’s waiting on results and maybe a feeling that on chemo you’re getting something that’s tackling more of it. But why not talk it through with your breast care nurse. All the best
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Hi, I had 4 EC and 3 Docetaxel, and was 36 when I was on it last year too. I don’t have any children though. Just wanted to say that although it wasn’t without side effects, I got into a rhythm and my team gave me things to help with the side effects that I did have.
Throughout chemo I was able to do everything myself and I also cooked every day (I usually cook from scratch). I was tired some days and didn’t feel the best with different side effects at times, but wasn’t bed bound, and keeping moving helps with fatigue anyway. Once you start chemo, you’ll notice a bit of a pattern on each drug with your days that you may feel a bit worse, so it may be worth writing down how you feel to suss it out then getting someone on standby if you can to be there to help on those days if you need it. Tell your team about side effects too, as they can give you something to counteract or help with nearly everything! I was able to exercise throughout too (just not to the same intensity as usual, but this gives you an idea of how able I was). You’ll be more tired and run down feeling at times, but you should still be able to do the things you have listed. Try not to think too much about all of the side effects you see too, as they are all listed but it doesn’t necessarily mean you’ll get them all there are chemo starter groups on here as well for each month, so when you find out when youre starting it it’s worth joining one to chat to other people going through it at the same time!
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@sunflower9 like @carrie5 I was also surgery first, though like her only one lump so different to you. But every case is different in one way or another so please be assured that your treatment plan will have been discussed by a whole team of medical professionals (people who specialise in chemo, surgery, radio, all the possible treatment areas - plus also your specialist nurse will have been in all of the meetings) and they will have agreed it is best for you based on all the available medical evidence (both your test results and years and years of clinical trials). If you want to know more about the options they discussed and the reasons for landing on your recommended plan (and why shouldn’t you!) then that’s one of the reasons your specialist nurse is there, so do lean on them for any questions and support 
When you went through the consent forms for surgery they are supposed (afaik!) to talk you through alternatives (and why they’re not recommended in your specific situation) - if that didn’t happen for you then that might be a good way in in terms of asking Q’s?
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@sunflower9 Welcome to the thread. We are a friendly bunch.
I had two primary tumours, one in each boob (bilateral) the first was 20mm and on an MRI to size the tumour to decide if it was chemo or surgery first as I was told the threshold for chemo first was 25mm. My mammogram and ultrasound sized it differently hence the MRI. The MRI sent a spanner I the works as it found another tumour in my other boob which was 0.9mm. To different grades to independent tumours. The treatment was based on the larger of the two tumours so it was surgery first, which I would assume is the same for you.
I had a bilateral lumpectomy followed by chemo and Herceptin. The MDT look at Predict https://breast.predict.cam/ to work out what would benefit for. Some doctors will discuss this with you others don’t. You can use it yourself but it always advisable to talk it through with a medical professional.
I was told after my surgery they got clear margins and the lymph nodes were clear. If there is no clear margins there is the option of further surgery and if the lymph node biopsy is positive then an a lymph node clearance. The chemo afterwards as is a mop up of any cancer cells that may be floating around your blood stream. It’s important to note that to have Herceptin or Phesgo you have to have chemotherapy as well.
I hope I have answered your questions but I’m not a medical professional so I would highly recommend a call to the BCN nurses on 0808 800 6000 as they have more time to talk. It might also be good to talk to your own breast care nurse who works with your surgeon to talk your procedure through. As already said the surgery and what may or may not happen next should have been explained. Although when you are going through all this you don’t always take it all in, you won’t be the only one to switch off at a clinic appointment. Always good to take a notepad and someone with you to listen aswell.
Take care
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Hi @suedot
So lovely to hear from you again. I’m sorry to hear you have so much going on and you’re still working. You are amazing.
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Hi @jan30 ,
I’m having the same treatment regime as you, I started EC in December when my little girl was 18 months. I’ve just had my first phesgo & Docataxel this week.
As others have said, side effects seem to hit everyone differently and it’s definitely hard not to google and worry how you’re going to feel! On my first day a lady in the treatment suite mentioned the ‘red devil’ to me which wasn’t helpful!! But whatever side effects it causes just think it’s also causing that havoc on the cancer
My experience on the EC was mainly a nausea / hangover type feeling which lasted about 5/6 days. The first cycle wasn’t too bad, but noticed a cumulative effect so felt a bit worse after the other doses. I did need help with my little one for the first 6-7 days after each cycle (but she’s maybe a bit more chaotic than a 7 year old?!). I was always feeling near enough normal by day 7 and enjoyed the week before the next treatment. There’s also the steroids and I had GCSF injections so hard to know what was causing what! Try to keep hydrated and if your anti-sickness isn’t helping ask your team for something else.
Hope this helps 🫶🏻
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