@hlc you had the same treatment plan as me. I wasn’t given any body scans to check for spread. The CT scan was for radiotherapy planning only. They told me that extra scan can cause anxiety and sometimes pick up things that are nothing but can involved more tests and procedures which can overly impact our lives. I have my annual mammogram and bloods before Zoledronic acid. I did push the GP to check bloods including cholesterol due to being on Letrozole, it was in my paperwork for Letrozole but the GP had never heard of it.
The breast care nurses should check on you, can you call them. Mine have an answerphone system. Where I am I have clinical nurse specialists from the oncology team who also check on me and I finished Herceptin mid September 2024. They call every 3 months.
I hope you hear something regarding your radiotherapy, I had my CT planning while I was still on chemotherapy.
Hi all, HER-2 positive (diagnosed last week) and start chemo next Wednesday 29th January, completely terrified.
Looking for any help preparing for chemo side effects, on Phesgo sc and Docetaxel and Carboplatin iv x 6 courses.
PICC line insertion and echocardiogram next Tuesday.
Any advice on stuff to buy and any help or hugs gratefully received
Hi @diddlydi1 welcome to the group. It’s a lovely supportive bunch.
It might be helpful to join the monthly chemo starters thread as well. It’s great support to go through treatment with others in a similar situation as well as look at older months for extra information. I joined a group thinking I was having chemo then surgery but ended up the other way around for me. But following an earlier month help prepare me.
I had Paclitaxel a taxane like Docetaxel and Herceptin. I was going to be on your regime but one of the tumours was smaller and I had a complicated family history of heart problems.
Chemo is not easy but it’s doable. Just be kind to yourself, rest when you need it and ask for help. Meal prep in advance if you can. Your appetite may change as well as taste and smell. Treatment affects us all differently and we all come into treatment at different ages and health.
I’m sure there will be others that can offer more help and guidance.
Hi @diddlydi1. Chemo is not lovely for sure but I found the worst of it was fear of the unknown. Once you know what’s ’normal’ and what’s not it gets easier. So my biggest advise is don’t be too brave and report any side effects you are finding tough to the hotline, as they will always have either a medication they can prescribe to help, or advise on how to alleviate the symptoms. And these groups are amazing for ‘normalising’ it all which is calming. Not that any of this is remotely normal! But it’s our collective new normal. If you are starting on EC I’d advise not eating once you get home from chemo - so eat well before the infusion! First cycle I mistook first wave of nausea for hunger and ate and spent evening on bathroom floor. That never happened again! I just take myself to bed or sofa straight from hospital and go to sleep early (with the aid of an over the counter sleeping tablet to combat the steroids). Honestly try not to be scared. That’s the biggest thing. Remember why you need the chemo - this also helps me.
Id say for me the biggest ‘battle’ in this chemo journey has been keeping my mental health in check. It’s manageable if you can stay mentally strong. Easier said than done!! Good luck. You will be fine!!! Xx
Hi @diddlydi1
Like you, I am new to this world. I have no tips but will be keeping an eye on your updates as I start EC on 31st. I feel weird as I am totally excited (I think that’s the word) to get it started. I get bloods on Thursday but was told the won’t put a PICC line in as I have lots of good veins….lets see how long that lasts
Take care and good luck for Wednesday.
Welcome to the thread. I’m on the same drug regimen as you. Started last Friday. Felt great over the weekend because of the steroids though sleep deprived because of the steroids. Double edged sword!
For last three days I’ve felt like I’ve been run over by a bus or three! I’ve taken the week off work and I am listening to my body which is telling me to rest. Makes me feel lazy as I’m a doer but I’m reminding myself that I am doing, doing what I need to do to get through!
Hello and welcome! You having exactly same treatment as me. I was only HER2 positive.
I know its scary the the thought of chemo and i was exactly same… just think of it as curing you and it zapping away all the naughty cells.
I had a total pathological response with my chemo and phesgo. And after my op i was told no cells was found and that i am now C free.
It seems daunting but you totally got this! There is light at end of the tunnel and its the only the way to get to it. Xx
Did anyone doing tchp have there doeses kept the same for the 6 ? Im halfway through and shes happy with how im coping and my kidneys are good still shes keeping the doeses the same, unless my kindneys start tk get affect x
Hello, i kept at the same does all way through as i coped well with it. I did not want mine lowering though either i wanted to attack it with the strongest as long as you are managing with side effects etc x
Thank you all so much for your replies and advice.
I can’t believe how reassuring it is to know there are others out there going through the same thing as me.
I hadn’t thought of the fact that instead of fearing the chemo you should see it as zapping and killing the bad cells, that’s a revelation.
Thank you for taking the time to reply and i hope to join the January chemo group to get advice about how to cope with some other side effects.
Sorry I don’t know how to add people who replied to this thread, can anyone advise as I just pressed ‘heart’ at the bottom of the reply?
You can type in @ followed by someone’s username @diddlydi1
Glad my message helped! I know exactly how you feel as i was exactly same last year. I finished chemo in november and had my double mastectomy and just waiting to start radiotherapy now x
@jeml aw right yes coping so far, hoping that it they dont get any worse meeting with the surgeon again next week. Hopefully can get some answers feel like im not sure whats happening still x
What a lovely day it is! One of the benefits of no longer having long flowing blonde locks is that I do not have to contend with frizz. Winner!
@louise11 Welcome to you. I continued to work from home doing my IT sales job during my chemo and after surgery but did not do my drama teaching as I was advised not to mix with masses of children which is a no brainer really. I had my mastectomy after chemo in August and started teaching again in September. I found it doable but as @naughty_boob says, we are all individual and respond differently. For me, the normality of a work routine helped me mentally and I would not have wanted to be without it, even if the fly on the wall would have believed differently hearing me curse and mutter daily about customers and colleagues! It’s natural to feel anxious before you start chemo (I got given a Lorazepam and flew through my first one….lovely!) but once you get started that will go away. Good luck!
@Linda_Corinne you are a trooper, working through chemo twice in your life.
@hlc I think you have to call up your breast care nurse and check all this out. You need to know what is happening, when and why certain decisions have been made. As @arty1 will tell you (ex-nurse) it is the rustiest wheel that gets oiled when it comes to busy NHS departments. You must advocate for yourself. Surely they will give you annual scans? You must follow all this up. Wonderful that you’ve coped so well with chemo.
@diddlydi1 - A warm welcome and a massive hug to you. We all know exactly how you feel. It’s a body blow and it sweeps you clean off your feet and turns your life upside down. Loads of good advice on this thread so do read it if you can. Also, have you joined January 2025 Chemo Starters as that’s a must so you can go through chemo together and share tips. We’ve all been terrified but will all tell you that you are in the worst bit and it WILL get better. Once you are on the treatment path you will feel more confident and it will become your new normal. I was where you are a year ago and I feel so good now in comparison. I think the quote is that the bad times in life do not last, the spring rains will come again. It’s true and what’s more, you will learn how to dance in them. For now, remember that we have Herceptin and it’s been a game changer for us HER2+ women. Our odds are fantastic. You are going to be ok but there’s lots of us here to help you through when you are having a wobble. @fimac1 - It’s great to hear you sounding so positive. You are going to kick its arse! In fact, something I have noticed is how different people sound from when they first come onto this forum compared to a few weeks in. There is usually a big difference and then they, in turn, encourage the new starters for whom it’s so terrifying. It’s heartening to see how normal this all is.
I conclude we are all normal!! Normal but very special and truly fabulous.
Tonight I get to start teaching a term doing Wicked, the musical. Oh life is good again!!
@jane13 I wish they had mentioned that Kadcyla was a possibility. I was really pissed off to be blindsided with those results when I came in for my post-surgery appointment. Such a punch in the gut. I think it wouldn’t have been as bad if I had known that there was the possibility, but I don’t do well with surprises.
That said, Kadcyla is mostly a non issue for me. Most annoying thing is all the appointments like someone said up thread. I’m almost halfway, done 6 out of 14 now. I’m lucky that my treatment centre is about 10 minutes away from my office, so I can just pop out on my office days for my blood test and I block out about 2-2.5 hours for treatments (and that’s including the drive to/from the centre from my house 25 minutes away). I lead a (slow) running group in the evenings on my treatment days and it’s nice because it gets me out of the house and I get a little bit of activity and fresh air which seems to help keep the insomnia at bay.
Home again after 2 nights at the hospital. Got the single mastectomy + lymph nodes removal this Wednesday. Got an silicone implant and I am fortunate to leave the hospital without any drains. If any of you have an upcoming surgery
/ mastectomy and have any questions please just ask
The very best news was that they didn’t see any cancer by eye. Waiting for PCR!!
(I was diagnosed with stage 3 - (90 x 50 mm).)
I am very hopeful I have a good feeling
Big hugs to all of you and thank you for your support
positive thoughts. You got this x
as long as you are managing with side effects etc x
meeting with the surgeon again next week. Hopefully can get some answers feel like im not sure whats happening still x
I have a good feeling