I am triple positive ie positive for ER8 , PR8 and HER2
My understanding is that it is less usual to be HER2 with only about 20% of us. I could be wrong, perhaps someone more knowledgeable will correct me if so.
What I do know is that my BCN told me that if you are HER2 there is a whole raft of things they can throw at it. I had 4 lots of Herceptin with my chemo and this afternoon I starting my first Herceptin injection which will be every 3 weeks for a year or so.
I was diagnosed in Oct 2016 with secondaries in the Liver. I was unable to have surgery due to having secondaries. I started Chemotherapy (fec) whilst the tumour was tested for HER2 status. Chemotherapy was then changed to Docetaxel with Herceptin and Perjeta. Docetaxel ended in March 2017 but have continued on a 3 weekly treatment of Herceptin and Perjeta. Also was diagnosed with a blood clot.
Had a rough year as my Mum passed away in June and I fractured my spine also in June and was in hospital. When I returned home had to wear a brace for 6 weeks. Then had heart problems in October/November. Now on medication for that also.
Let me know how you are getting on and where you are with treatment.
The treatment is hard especially for the first week. Slight improvements for the next couple of weeks and then treatment starts again. Not sure when/if my energy will ever return as I am so tired all the time. Also hot flushes are a nightmare. Trying magnets at the moment to see if they will help. But seem to be getting hot flushes every hour. Even worse when I have had a meal at night.
I'm also having bereavement counselling as I'm still crying over losing my Mum.
I find this site so helpful and comforting. I don't post things often but enjoy reading all comments and blogs.
I wish you well and even though it's hard we all must continue fighting this horrid disease.
By the way the pictures and comments on the Awake thread do make me smile.
Had my surgery 1st Sept, started FEC-T chemo on 1st Nov. The first 3 were the FEC part you have this every 3 weeks, I found that reading the stories on here sometimes helped, you get worst case scenario so then it doesn' semi so bad. Positive mental attitude goes a long way, be strong you can beat this.
I had my first "T" part along with my first Herceptin on 3rd Jan, they didn' tell me before but I had to stay on the ward for 6 hours just incase I had a reaction. I wasnt prepared for a stay so was sat there bored for hours. It took 2 hours for the "T" to be administered.
So I'm 2/3 of the way through chemo, i'll have to have 18 lots of herceptin in total, they continue every 3 weeks, so basically it works out 12 months. I will also, at some point start tamoxifen tablets, I hink they're for 10 years.
Radio therapy after chemo too.
It' all very doable, don't sacred or overwhelmed, if youre unsure or having a wobble there is always someone on here to talk to.
Hi Peanut, I’m also Her2 and ER positive. I was diagnosed in March, has 6 sessions of chemo (Fect), a mastectomy with expander implant, I then had a full node clearance and have just finished 15 sessions of radiotherapy. I’ve had 13 of 19 herceptin injections too and I’ve been taking Tamoxifen for 2 months. It is all doable and the key is to take one day at a time. I think the scary thing is that when you are first diagnosed you read that the her2 positive is very aggressive but luckily they do have treatment to try to zap it and recently there have been some new ones out there like Perjeta which you may be offered. Let us know how you get on xxx
Thx for all your replies guys - it's so great to talk to people going through same!
Diagnosed with breast cancer - lumpectomy in nov and node removal. Clear but due to type they want to give chemo as well radiotherapy. You're right it's shocking when they use the words aggressive !
I have a chest line due to be inserted then chemo on same day - 17 Jan. 3 months FEC then T part also herceptin and radiotherapy and tamoxifen. Bit of a slog but they seem to be chucking everything at it!
I was diagnosed positive on both. Had one treatment of chemo due another on Monday then I have another in 3 weeks before starting the herceptin along with a different chemo. Been told I have to have herceptin for 12 months from starting it. Also after all the chemo I then have my operation followed by radiotherapy.
First chemo was the week of Xmas and I was scared, but it has gone well, they give you tablets to help if you feel any sickness, they certainly keep their eye on you.
Me too. You're right that "aggressive" is a terrible word to hear but here is another one - "gamechanger" . That is how my onco has described herceptin.
I'm through chemo and halfway through herceptin. Ten years of tamoxifen. That worried me because I'd heard that some people couldn't do because couldn't stand the side effects but I'm finding it fine.
I'm the same and like Blaster am having the chemo first, then operation and radiotherapy. The chemo is to shrink the cancer before the operation and hopefully lumpectomy and node removal. I've been told that they will start the Herceptin same time as T part of chemo and that will be every 3 weeks for a year and Tamoxifen for 10 years. I've had first FEC chemo on 20 Dec and next due Wed.
I think in England they give you Perjeta/Pertuzamab with the T bit for HER2+ (or maybe just some health authorities?) but they don't in Scotland. They said I would have to pay £15,000 if I want it. I do believe it is being reconsidered by the Scottish government health committee in January though. Don't hold out much hope as they've rejected it 3 times on the basis of cost.
I too am er+ and her2+. I had a wle lumpectomy and slb in July 2017, finished few-T chemo in December, started herceptin Jan 1st (happy New year!) which is every 3 weeks for 12 months, full node clearance operation Jan 31st 2018, then radiotherapy, continuation of herceptin then tamoxifen for 5 years.
The positive is that we are eligible for herceptin which appears to be a very good effective new drug.
Good luck with your treatment, we are all there with you
I was the same both positive and as it was not in one place but spread over 75mm I had to have mastectomy of left breast. No treatment other than letrezole and risedronate for 5 years just had anniversary mammogram no results yet but I am feeling very good about it and I will be fine.
Ask many questions, write them down as you always forget and this helps.
