hi girls bear with me, i have just got myself a laptop and am a bit slow on it. i was diagnosed 3 years ago with grade 3 her2+. i was furious that i had to have herceptin. as this was administered in the chemo unit which i hated. However herceptin did not (in my case) give any nasty side affects. Eventually i actually looked forward to going and seeing all the girls and nurses. worried at mo as have my mammogram on Thursday.
My first biopsy said I wasn't a candidate for herceptin, but after femera failed to do any good onc sent me for another biospy. This time it was positive for Herceptin. Happy days! I now am about to have my 3rd one on Tuesday alongside zometa and tax.
try not to worry too much, they have to be sure that the treatment you recieve is appropriate
Hi beardie I had to have mine tested again because as Dawn said the first test was HER++ so had to have the FISH test.I didn't know this at the time and it wasn't until my second chemo that I got the result.Mine was negative.
Good luck Melxx
beardie,like me you are being treated at Telford/Shrewsbury-it took them weeks and weeks to get the her2 results.Sorry just seen post about retesting so I cant help at all-sorry.
I hope I am getting this right - one reason they may be retesting could be because the first test came back her2++ and not her2+++ which leaves it a bit borderline and they then carry out a more expensive test called FISH which will show definitively if the tumour is her2 neg or pos.
My situation is different from yours in that although it is thought that my earlier tumours were her2+++ testing or indeed the whole gene thing wasn't known about back then. I had almost exhausted all suitable chemos when I was dx with 2ndaries so they tested an old tumour and found I was her2pos. I think when you are found positive with a primary tumour and herceptin is given in the hope of giving you better protection against further recurrences it is hard for you to know if it really works.
In my case at the time I had a lot of lymph nodes swelling all around my neck and upper chest area which were visible. On the first dose of herceptin all the swellings went and never came back (9 years ago). 2 previous chemos had failed to do this. My extensive bone mets have been kept stable all this time as well. How I wish herceptin had been around much earlier but at least I benefitted from it and I hope all of you who are tested positive now will have kicked this bc into touch (is that the right expression LOL).
Just been told my tumour has to be retested so won't get my herceptin results until next week. I am now in a panic as if they are being retested then they must be positive right ? Has anybody else had this happen to them ? My BCN was a bit vague on the phone said she didn't know why they were retesting. I think this wait is the worst.
All, I was told my HER2 status after biopsy but it meant absolutely nothing to me then. I wasn't told at post surgery clininc (maybe this was because I had a complete breakdown!). I met my oncologist 2 weeks ago and there is some confusion about whether it's the DCIS or tumour that's positive so they are running further tests. I'm starting chemo this week,3 FEC 3 T and have been told if it's confirmed HER2+, I'll have this with the Tax and then again after radio. Boy, it's such a long road!
At my unit- the northern cancer centre you don't get herceptin with tax. When I asked my onc why not when so many others do. She said it was because they did not want to confuse the side effects of the two drugs. So I had my first herceptin three weeks after my last tax. Different units have different protocols. On an individual note I was quite happy with that as my heart has cause probs before and having Chemo that caused me to have palpitations and herceptin that can affect the heart at the same time might have been too much for me.
Most don't seem to get their her status until after surgery, because they told me they needed the whole tumour. But there may be other tests that can be done on the biopsy to find out.
CM is correct, I am having Herceptin with Tax. I am having Tax weekly as my onc says it is gentler but just as effective. Seems ok so far, but then every treatment can bring its own delights.So I get herceptin every 3 weeks.
I had mine confirmed from the biopsy alone, ER and HER+++ I got them both at the same time. My chemo has been upfront, so there will not be as much to analyse at the end of it I suppose.
Thanks for that, I was a little concerned!
If the regime planned for you had been 3 x FEC and then 3 x TAX, you could expect to have it WITH the TAX as the leaflet says it works well alongside TAX. (I've read somewhere that it improves the action of both Herceptin and TAX to have them together but I can't remember whether I read that on the BCC forums or in the Herceptin leaflet.)
Back to Mel's question, I asked specifically when they had the core biopsy samples if they'd do the usual checks, and when those results came back it appears they only did the Er and Pr checks, not HER2. I don't know why they didn't check HER2 status on the biopsy, but reading between the lines I think it's a good bit more expensive and the accuracy is better when performed on the tumour itself when removed, so they probably hold off on that particular test until they have the whole thing, so they don't have to do the test twice. Makes sense when you look at it like that, but still a pain in the head that it leaves people hanging around waiting...
Panic yea not ... I'm not having it with Chemo. It was either surgeon or BCN who originally told me that Herceptin would be given concurrently from 3rd Chemo but I think they should have qualified that statement with specific regimes. As soon as ONC decided I was going down the FEC route, he confirmed it shouldn't be given concurrently so it'd be my final treatment. I just don't know how many he's going to recommend but worst case scenario I could still be on it as of Oct 2012!!
Sorry, just re-read my first post and it wasn't very clear :-}
Mini, are you SURE about having Herceptin concurrently with FEC? I have read (on the leaflet that comes with Herceptin so not a quackery website) that some of the Herceptin side-effects are worse when taken with, erm, anthracyclines (I think that's the term, but it means the type of drug that includes Epirubicin) so the risk of heart damage is greater. I'll see if I can find the leaflet, but you should be able to track it down if you google Herceptin and go to the manufacturer's own website.
Beardie, if you ARE HER2+, it is likely that they'll chemo you too, as Herceptin works best in conjunction with chemo. But as the others have said, it's the onc's way of putting us back on the same level as HER2- people, so I'm happy to go with it.
Thank you everyone for replying - I guess then I might be in for a long wait for my Herceptin results- arh more waiting ......
Thanks again Melx
Hi can I butt in here? Different again. Was told 6 days after biopsy (Nov 2009) that I was ER and PR 8/8. But I was a chemo first gal. After 6 x chemo and WLE and further surgery for better margins I was told 3 weeks after the last surgery ie. 13/7 2010 when biopsy done 26/11 the year before that I was HER -ve Told all this was OK. HER could only be done on tissue removed and I did need to see the report to check for myself.Basically HER test takes longer and as in my case could not be done on biopsy and was 6-7 weeks after 1st WLE.Take heart. Love Jackie
Just to buck the trend, I had all results at the 10 day post-surgery appointment (ER & PR Neg & HER2 Pos).
My ONC told me last week that I'll be having x 6 FEC but he hasn't decided yet how many Radio or how long Herceptin! He'll review during Chemo but they would run one after the other. I'd originally been told that I would have FEC 1 & 2 on their own but I would then start Herception concurrently with FEC 3,4,5 & 6.
Best wishes xx Chris xx
I am having my last of 18 herceptin on Thursday. The side effects compared to chemo is minimal.
I was told I was hormone negative one week after my biopsy. The HER+ diagnosis was about 2/3 weeks. I knew I was HER+ when I had my mx about 3 weeks after diagnosis.
So the delay is nothing to worry about
Hi Beardie I think we all have to wait longer for the HER2 test results,I wasn't given mine until I went for second chemo.I had grade 2 17mm plus 1 node involved ER+ HER2-.I must admit though I did keep thinking what if it's positive,but my Oncologist told me that the only difference would be that treatment would take longer and that herceptin puts those with HER2 positive cancer back on the same level as HER2 negative.
Good luck love Melxx
Don't panic....so far so good....you have a really good set of results so far....that if you have to have bc its about as good as it gets!
So as for Her2.....if positive you will get herceptin for a year....its not scary at all and both me and my daughter are on herceptin and apart from a few fairly minor side effects we are just grateful it puts us back on terms with the HER2 negative folks.
It is quick to administer, and we get on with our hectic active lives and don't really worry about it at all.
Whatever the results you will be fine 🙂
Me again- well i am now in a panic again about my results. As you know i am grade 2, 10 mm, stage 1, clear nodes, er+ - i am waiting for just one more result the herceptin one. I have ( i know i should't )been googling as i knew nothing about herceptin. I am now scared that my cancer will now be herceptin positive as that is why i am waiting for just that result. Has anybody else had to wait for just this result, why don't you get them all at once - arrrrrh I hate waiting.