Triple Neg - not sure if i am?!!!!

Hi there everyone, not sure if anyone can help. I had the test done to see if i was HER2 positive a couple of years ago and it came back negative, does this mean i am triple negative, i am so confused. I have been on Arimidex for about 5 years after getting secondary in my bones. Now it looks like the cancer is on the move cos my tumour markers have gone up to 135. Waiting to go for a ct/bone scan soon. Last March they went up to 75 had the scans but nothing showed up. Really scared now. If anyone can help i would be grateful. Thanks Debs

If you have been on arimidex then your cancer would have been er+ and pr+ so no your cancer is not triple negtive (trip negative means er- and pr- as well as her2-.)

Sorry to hear about your progression and hope you soon get a new treatment plan sorted.


Thanks Jane I will check with my onc next time i see him it was probably just the HER2- you must think i am really stupid. Is HER2- bad I know that i could not go on the monthly infusions like others. Not sure what they are called. I must be honest when i get in there with the oncologist i just want to get straight out of there as quick as possible and dont ask the right questions! I think i just want to bury my head in the sand. Anyway thanks again. Debs

Hi Debs, I was tested 41/2 years ago to see if I was HER2+ but was HER- I am er+pr+ it is all very confusing when I was diagnosed with primary bc in 1999 I only remember being told I was estrogen receptive. I have always taken a note book and written questions and answers down always date the page it really does help you keep a record of what is going on. We have all had that ‘bury my head in the sand moment’ I had one last week!
Love Debsxxx

Debs, it’s **** having any form of bc and the jargon is indeed confusing.
Like yourself, I am HER-negative (which means that herceptin won’t help control our cancer) and I have secondaries in my bones. I wanted to mention that monthly infusions of the bone-strengthening bisphosphonate drugs (e.g. pamidronate and Zometa) ARE usually suitable for us - I have been treated with both these.
If it’s difficult to bring out questions when you see the oncologist, maybe if you have a specialist bc nurse you can ask her any questions at some other time… that’s what I have sometimes done… these nurses have access to our records.
I think there are quite a few treatments that can help, even if Arimidex isn’t working for you. Newer hormonal drugs as well as various chemotherapies.
Hope you get a good and effective new treatment plan soon!

Hi there thanks for your comments. Yes, really need to take pen and paper next time, and I need some answers - can’t keep running away from this. Thanks Mrsblue for telling me about the two infusions that are suitable for us, at the moment I take Ibondranet (probably spelt wrong) but I think this is for bone strengthening. Anyone got any comments as to what you think they will do for me - not keen on more Chemo but whatever prefer to take a magic pill! Anyway take care out there all of you.

Hi Debs,
I was on capecitabine tablet chemo so did not lose my hair, I was on it for 2 years so maybe ask about it.

Love Debsxxx

Hi Debs, Thankyou so much i will ask about that chemo tablet, how did it make you feel and how are you now Debs?

Love Debsx

Hi Debs,
for me it was by far the easiest chemo 2 weeks on 1 week off 2300 mg twice a day. It made my feet scabby but e45 cream rubbed in every night and they were as soft as a baby’s bottom! If you read the Back on Taxol thread it will explain my condition. I wont bore or scare you with it on here. There are several different chemos that you can try. I think for me the 2 extra years capecitabine gave me were well worth it. Taxol for me is a tough chemo but as long as it works it is worth doing.

Love Debsxxx

Hi again Debs, I too take ibandronate (Bondronat) daily tablets for my bones… was changed to this when bone scans showed mets under control.
From what you say about tumour markers it seems probable that you’ll get a revised treatment plan for controlling the cancer (I’m guessing what this might be but I’m not an oncologist, haha!) and quite likely, one of the intravenous infusions for your bones. They should be OK for you - there are several threads discussing these. There are some advantages to stopping the daily routine of taking these tablets :wink:
Do let us know when your onc appointment is… or if you prefer, post a message after you’ve seen him/her - we’ll be thinking of you.

Hi DebsH

I have bone secs. At end of last year my tumour markers had gone up, onc changed tablet from tamoxifin to femera, still kept taking bondrant but also had oopherectomy (had found out earlier BRCA2). Recent ct/bone scans show no further spread and still not had any chemo. Don’t know if this is of any help, but fingers xd you get good news.

Thank you all so much for your posts they have all been really helpful and I think I am feeling a little more positive about it all. Lindsey have to go to onc on 8th Jan cos the scan results should have come back by then. Wont be posting for a week cos have to go to Spain for a funeral (nice) anyway take care all of you.

Love Debsxx