@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 todayās meeting with my oncologist to finalise my chemotherapy plan.
Iām 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 wonāt change the chemo plan.
Iāve been told Iāll have EC chemotherapy (Epirubicin + Cyclophosphamide) every two weeks for four cycles. The oncologist used the term ādose-dense,ā which completely freaked me out and sent my mind spiralling about potential side effects. After that, Iāll have Docetaxel (every three weeks) and Phesgo. The full course will take 20 weeks, followed by a likely mastectomy. Iām feeling quite scared at the moment. My oncologist seems to think this is manageable, but when I looked up Epirubicin + Cyclophosphamide, I saw itās sometimes called the āred devilāāwhich has only made me more anxious (forgive me if Iām panicking over unreliable internet information!). Iād 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. Iām so pleased you are here.
I didnāt have EC so canāt comment. I remember reading on the chemo starters group itās called the Red Devil because itās 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.
Iām 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 doesnāt do doxetaxel. Everyone copes with the chemo side effects differently so you wonāt know how you feel until youāve 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. Youāve got this 
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Hi @jan30 like you Iām triple positive.
I have had two lots of EC so far, and once Iāve had my fourth, will go on to paclitaxel x 12 and phesgo.
Youāre right they call it the Red Devil but I doubt itās because itās any worse than any other chemo. Itās 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 ādose-denseā 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 havenāt 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 itās 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. Iām a bit slow replying as I spent the morning waiting my theatre slot for 2nd attempt at WLE to clear one margin that they didnāt get first time. Back home and feel fine. Donāt get results till end of this month so chemo likely to be March. Am HER 2 +ve so Iām 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 āliteā 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 Iām 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 Iām 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. Iām HER2 and O+ and Grade3, although 1 lump not 2. Canāt entirely answer your question but I see the surgery as being an important part of the treatment even though of course itās waiting on results and maybe a feeling that on chemo youāre getting something thatās 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 donāt have any children though. Just wanted to say that although it wasnāt 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 didnāt feel the best with different side effects at times, but wasnāt bed bound, and keeping moving helps with fatigue anyway. Once you start chemo, youāll 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). Youāll 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 doesnāt necessarily mean youāll get them all there are chemo starter groups on here as well for each month, so when you find out when youre starting it itās 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 shouldnāt you!) then thatās 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 theyāre not recommended in your specific situation) - if that didnāt happen for you then that might be a good way in in terms of asking Qās?
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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 donāt. 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. Itās important to note that to have Herceptin or Phesgo you have to have chemotherapy as well.
I hope I have answered your questions but Iām 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 donāt always take it all in, you wonāt 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. Iām sorry to hear you have so much going on and youāre still working. You are amazing.
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Hi @jan30 ,
Iām having the same treatment regime as you, I started EC in December when my little girl was 18 months. Iāve just had my first phesgo & Docataxel this week.
As others have said, side effects seem to hit everyone differently and itās definitely hard not to google and worry how youāre going to feel! On my first day a lady in the treatment suite mentioned the āred devilā to me which wasnāt helpful!! But whatever side effects it causes just think itās 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 wasnāt 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 sheās 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. Thereās 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 isnāt helping ask your team for something else.
Hope this helps š«¶š»
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Afternoon all
Iām currently at Marsden waiting to have my Phesgo and as always, itās lovely to see all the nurses and staff Iāve got to know over the past year. I greet them like old friends now! 
Iāve just been brought a coffee and some Belgian chocolate biscuits. This beats being at work! Iāve also just been weighed and it continues to creep up but the less said about that, the better. Am I about to deny myself the Belgian chocolate biscuits? No I bloody well am not, so end of conversation!
@magl I am on zoledronic acid every 6 months for another 2 years. No side effects here and I tend to be a person who says yes to whatever drugs I get offered. I should probably be a little more questioning about it all but I was something of a hedonist in days gone by and I guess old habits die hard! 
@hlc I am also on AdCal-D3 which they give me at Marsden and they are perfectly palatable. My last blood test showed perfect calcium levels so I guess itās all working.
@sms Parents Evening was ok-ish! Better than usual and letās just leave it at that. Well done on getting the blood test and Iām glad Kadcyla could not only go ahead but that you were secure in the knowledge that it was safe to do so. Keep pushing for that radiotherapy date.
@jan30 Welcome and Iām so sorry to hear that you are going through this so young. Itās a sad fact that there are quite a few 30-somethings on this forum but at least you are not alone. Iām so glad some of them have already answered you. I was also scared to be told that EC was known as the Red Devil. On the first day I had it, I saw this big red syringe of liquid and I said to my dear nurse, Santwona, āOh, thatāll be the Red Devil then?ā to which she replied āI prefer to call it Ribenaā!! I quite like that because it takes away some of the fear. Yes itās powerful but that is why it does such an amazing job. I felt nauseous but was never actually sick and the worst part of it all for me was my adverse reaction to steroids. I was told by my oncologist that I sailed through chemo. I donāt say that to be smug, just to illustrate that itās different for everyone. I cooked all the way through and kept exercising, just not on the Saturday and Sunday after having it. They were my sofa days but as the legendary @naughty_boob says āItās doableā and sheās right. The other worst bit for me was the loss of savoury taste but itās only temporary and I am once again eating like a demon now my taste buds are fully returned. Just have those people on standby to help you out when you need it and if youāre worried then come on here. We will help you through. Really good luck. Now go in there and kick its butt!
@rrey Always good to remind everyone not to Google. Itās the very worst thing you can do for your mental health and masses of it is inaccurate and out of date. Great to hear how you are ploughing through now.
@sunflower9 Welcome to you too and a big hug for you. Please donāt apologise for worried ramblings. Weāve all been there. I had quite a few surgeries before chemo. When I expressed the same worries as you and said I wanted to get on with my treatment, I was told I was in treatment, it was just a different way round of doing it. Post chemo they will look at the pathology to make sure there is no cancer left in any of the tissue. Definitely ask the questions you need answering of your team though, so you know their reasons.
@carrie5 Good to hear that your op is done. I remember it well having to go back for another attempt to get clear margins. Rest and heal now and weāll all pray that they are clear now so you can get on with the chemo.
Being back in the office is fast eradicating my goodwill at being given a new lease of life!! With my new regime of self-care, I shut the door and got under my duvet on my sofa in my little snug last night and watched the first episodes of Amandaland and Am I Being Unreasonable. They were very funny but not quite as funny as my friend sending me a photo of his Botox disaster! They were just what I needed so I recommend the first two. I think it would be unfair of me to share my friendās Botox disaster on here!! 
Love and strength to everyone,
Salbert
xx
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@sunflower9 . Following my biopsy I was diagnosed with 24mm grade 2 er + and booked for surgery 16 days later. Just a few days before surgery i was informed it was her2 +, there was enough tissue to test for her 2 from the biopsy so i had to make a decision myself as to whether i had surgery as planned then chemo or chemo then surgery. I decided to get it out 1st. My thinking was get it out before it can do any more damageā¦so i went ahead and had a lumpectomy with node removal. As there was only one node it drained to i just had the one removed . I think for me i made the right decision as it ment waiting 6/8 weeks to see oncologist and start any form of treatment
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@belle1 thanks for clarifying about dose-dense chemoāwhat a relief! @rrey , itās really reassuring to hear that Iāll still be able to be around my child and do as much as possible with them.It sounds like we have very similar chemo regimens, @belle1 and @sooz1 . What anti-sickness tablets did the nurse prescribe, and do you take them even if youāre not feeling nauseous yet?
And @salbert , itās so encouraging to hear that you sailed through ECāI really hope I can handle it as well as you over the next eight weeks!
Iām about to have my first session on 12th Februaryāfeeling nervous but also a bit excited to see the red devil get to work on killing those bad cells!
Also, I am about to try cold cap for my hair, anyone tried suzipads for their hands and feet, do they work?
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Thank you all for your support and putting my mind at ease. I am usually quite a positive person but think I am just have been having a difficult week. I guess I just have to get used to this out of control rollercoaster journey! It is so lovely to be able to connect with people who understand what you are going through.
I am going to try and focus on getting through surgery next week. However, I have never been under before and did start wondering if I will lose body functions as I am a very windy sleeper, god bless the surgeon in which case 
. Hope you are all having a good week! Many thanks again.
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I imagine your hospital will have their chosen antisickness protocols for each drug, but for EC I had a Netupitant/palonosetron pre-med that they gave with steroids about an hour before then they gave me domperidone to take home. I was advised to take it regularly for at least the first few days and Iād definitely recommend doing that! I had to switch to cyclizine after the first cycle (only because I had to just stop breastfeeding when I started treatment and domperidone stimulates prolactin which didnāt help me trying to dry up the supply). I think the steroids are also meant to help with the nausea. Some of the drugs can be constipating too, which can add to the nausea so just try to keep on top of that and get something for it if you need to.
Iāve been using the cold cap, I have lost quite a lot of my hair but Iām persevering with it for now. I didnāt use the Suzzipads for EC but was recommended them for the Docataxel so wore them on Monday. Canāt say yet if theyāll help but fingers crossed 
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