Triple positive hormone receptors

[Sophie S]

Hello. Mine all went fine - chemo was manageable - I was on docetaxel and carboplatin but my consultant took me off the carbo after three rounds as my body wasn’t  recovering quickly enough. I felt so much better after I was on just docetaxel! The three week cycle worked for me from a family life perspective, as after the first few days I felt fine to do school runs and so on (which I wanted to do). I was quite relieved when it was over, though! It was quite a mental exercise in convincing myself each round to me one closer to the end. Then mastectomy, which was fine and no pain after. And radiotherapy next week for five days. Then done! Oh and importantly, I should let you know mine was a large and aggressive tumour, but the chemo worked and got rid of the invasive tumour in breast and lymph nodes. Sorry - important fact! So I hope your treatment goes well. The chemo (if you’re having that) is a bit of a slog but it does pass- and it’s worth it. 🙂

[bibi53]

Hi I am triple positive can I ask how your treatment went please. Best wishes

[Codyboy5]

Hello Sophie S

firstly , thank you so much for your reply 

so I am going to follow the suggested plan and I have had some bad emotional moments up to now but I have now started to put my mind in the mindset mode and I feel so much better for doing so xx 

[Sophie S]

Hi Codyboy5 - that sounds quite similar to me too - 6 x chemo, mastectomy, radiotherapy, more chemo.  I have Herceptin injections for a year every 3 weeks (in the thigh - they're not too bad) and also Zoladex every 4 weeks for 5 years (I think - I can't really remember that bit - but I certainly remember the injections!).  I remember the CT and bone scan and echo all feeling quite surreal - almost as if it were happening to someone else.  It is a lot of information they give you at the beginning, and there is a lot going on, which makes it all quite overwhelming (and alarming), but once you start treatment (if that's what you decide) you will hopefully find you get into the swing of things.  I'm doing what they suggest, as that is best for me, but I understand that you really want to think about this.  Do you have any breast cancer nurses you can talk things through with?  Or maybe it might be worth chatting to Macmillan?  I think talking through your anxieties and thoughts about it all may at least help you clarify your thinking so you can work out what you think is best for you.  

I know that I feel better when I feel like I'm in control, inasmuch as I can be, so I feel a bit thrown any time any new information/treatment process is added into the mix, until I manage to assimilate it into my understanding of it all.  I feel better if I know exactly what is going on and roughly what the medical reasoning is behind it.  That's what works for me - some people prefer to know more, some less.  But hopefully once you've been able to process/clarify your thoughts a bit and worked out how best to proceed in a way that works for you, you might feel more in control of what is going on.

Sending you lots of good wishes

Sophie

[Jane Gurney]

This sounds a little like the treatment I will be undertaking.  I'm going to be on 7 rounds of chemo, then lumpectomy, then more chemo (yes injections) and also radiotherapy.

For me there has been no decision NOT to go through with it, I am accepting I have to make myself feel I'll to get rid of this nasty tumour and then carry on.  

[Jane Gurney]

Thank you

[louby_lou69]

@Codyboy5  If you're on Facebook there's a massive breast cancer uk group that is bound to have someone that could answer your questions. If you search for it it's got a picture of a beach scene with sunbeds and umbrellas-it's very active with 3.2k members

[Codyboy5]

Hello

i went to oncologist yesterday , I felt like I wasn’t really there , I listened , I was refusing stuff , crying , then accepting , then listening , then laughing but, through all this since diagnosis every one I’ve met medically or spoken to have been Fantastic !!!  They answered my questions but yet there are still some I want to ask , they suggested heart scan , then 6 chemos , lumpectomy , injections in thigh x 18 over a year , then other oral drugs ! A lot to take in , a lot to think apart as reading those leaflets and seeing some side affects are quite scary although I know not everyone will have them and I’m not a believer in all this stuff medically so will take a week or so to think about it but I wish there was someone I could speak to someone who has had all that I have been suggested and has come out the other side but there isn’t anyone and I have searched the whole internet , also I would like to have spoken to someone who decided NOT to have all that was suggested , and what their outcome was 

It’s a lot to take in 

xx

[Jane Gurney]

@louby_lou69 

Good luck, keep posing or if you want to What'sapp me it's 07890 838296

[louby_lou69]

@Jane Gurney My surgeon gave me two options, the option that you're having- chemo first then lumpectomy and also surgery first then chemo (without the Perjeta). 
I find it so confusing as to why people seem to have similar cancers but are given different treatments. I asked her advice and she said surgery then chemo/radiotherapy would be her suggestion. She'd even booked me in for surgery.

My results appointment is tomorrow so I will find out my fate regarding chemo. Dreading it. 

[Jane Gurney]

@louby_lou69 

Of course, keep in touch!

Here we go:

The FEC cycles (3)

You will have three or four cycles of FEC (5FU, epirubicin and cyclophosphamide) over the first few months.

On day one, you have 5FU, epirubicin and cyclophosphamide. After that, you will have no more chemotherapy for 20 days. This completes one cycle of treatment and you then start the next cycle.

The T cycles (4)

When you finish the FEC part of treatment, you will have three or four cycles of docetaxel on its own over the next few months.

On day one, you have docetaxel. After that, you will have no more chemotherapy for 20 days. This completes one cycle of treatment and you then start the next cycle.

This will also include:

pertuzumab (Perjeta®) – a targeted therapy drug

trastuzumab – a targeted therapy drug

Pertuzumab and trastuzumab are used to treat HER2-positive breast cancer. HER2 positive means that the cancer cells have too much of a protein called human epidermal growth factor receptor 2 (HER2) on their surface. The extra HER2 receptors stimulate the cancer cells to grow. Tests on the cancer cells taken during a biopsy or surgery show if the cancer is HER2-positive.

Pertuzumab and trastuzumab target the HER2 receptors. Each drug locks onto a different part of the HER2 protein. The drugs block the receptors and stop the cancer cells growing.

[louby_lou69]

@Jane Gurney I think I’ll probably be following you. Im expecting chemo to start in September. 
Do you know what your drug regime will be? 

[Jane Gurney]

@louby_lou69

Thank you!

So they're going to throw absolutely everything at me. Chemo to start in about 3 weeks with 7 rounds (I was expecting 6)  Before that I will have appointments for a PICC line to be inserted, blood tests and a heart scan, oh and the MRI this Thursday. Surgery will be after chemo, then more chemo then Radiotherapy. So a good year of treating me.

Answered lots of our concerns today and he was fully aware of my blood cancer too (may be asked to stop those meds before the chemo).

So still a bit of a waiting game to get a date to start but looks like it'll be a busy few weeks ahead.

[louby_lou69]

@Jane Gurney Hope it went ok this afternoon x

[Sophie S]

I hope your appointment goes okay, and I hope you feel easier once you have a clearer idea of the plan.  And I hope you got some sleep in the end!

Sophie

[Jane Gurney]

Have my first appointment today with the Oncologist for my treatment plan.

I'm awake already (it's 4:30am) & the appointment isn't till 2:45pm!!  Feeling sick to the stomach with anxiousness.

Once I have the plan I'm sure I'll feel better.  Need to take one day at a time.

[Codyboy5]

Thank you 

I’m trying to get my head round it all I’m still in shock 

xx

[Jane Gurney]

I'm IDC.

Chemo first, then lumpectomy (I believe), then radio.

Really missing the HRT, hot flushes all day, feel a bit woozy (although that might be the stress and anxiety) and been bleeding again (I had a hysterectomy some years ago but left the ovaries in) so assuming it's just old lining in the cervix coming away.

Oncologist tomorrow for my treatment plan, had a sleepless night and no doubt will again tonight as becoming more anxious.

[louby_lou69]

I had to stop taking my HRT too. I miss it 😞 the hot flushes are coming thick and fast now.

My cancer is lobular and ER/HER2 +

I had a lumpectomy 12 days ago and now waiting for my results & to find out about my chemo regime.

[Jane Gurney]

@Codyboy5 

I know what you mean about feeling hopeless.

I had to come straight off my hrt and my mind and brain feels like mush!

Good luck with everything xx

[Codyboy5]

I have just been diagnosed grade 2/3 

positive/neg but if I never squashed my left boob in the door I’d never have found the lump I was upset as biopsy results not given quick enough but after complaining to PALS appointment pushed forward , I am a very strong person normally but at the moment I’m hopeless 

xx

[Jane Gurney]

Thank you so much for your reply, I have my treatment plan meeting on Monday.  I halso have a blood cancer so assume, like you, that drugs will be adjusted but from what I have been told so far my plan sounds very much like yours, although I will have a lumpectomy.

I wish you well xxxxx

[Sophie S]

Hi Jane

I'm triple positive too, and have just had my third cycle of treatment (of 6).  Everyone will be slightly different, but yes, I've started with chemo first, then I'll have a mastectomy, then radiotherapy and then, I believe, a little bit more chemo!  Plus herceptin injections (I think for a year) and some other delightful injections (I think for 5 years, but this seems like rather a lot to me) to bring on the menopause!  But I don't know that this is standard - my tumour is quite large and aggressive, by all accounts...and my chemo regime is docetaxel and carboplatin throughout, as I've had leukaemia before, so the drugs were adjusted as a result.

Re. the hair loss, I found having nice scarves helps - I'm so used to them now that it will be weird to start showing my hair again (when it grows back).  I started to wear them partially covering my hair before it all fell out, so by the time I was forced to accept defeat and shave what remained off, I was completely used to wearing scarves.  

I wish you loads of luck.  I hope you don't get too many treatment side-effects.  

Sophie 🙂

[Chiara_BCN]

Hi, 

I'm sorry you haven't had any response yet, I'm sure one of our Forum members will be in touch to share their experiences soon 💕

Our Breast Care Nurses can offer you a friendly listening ear on our free Helpline 0808 800 6000, if you would like to speak to someone about this in the meantime. Alternatively, you can get in touch with our Nurses in the Ask Our Nurses area of the Forum and they can respond to you online.

Sending you my best wishes x

[Jane Gurney]

Newly diagnosed, yesterday, so processing it still.  Have first oncology appointment in a week.  I understand that it is aggressive chemo first, then surgery followed by radio?  Hair loss is my greatest worry which I know is silly but vanity does kick in!

I already have a type of blood cancer (MPN JAK2+) so on daily chemo tablets as well, dealt with that diagnosis 6yrs ago so looks like I'm clocking up another big "C" 

Any advice or thoughts would be lovely ......