I’m new to this group. I’m 43 years old and today I was told I have ER, PR negative, HER2 positive metastatic breast cancer. I have mets in lymph nodes, bones and liver. No symptoms- only had a mammogram as my Mum was diagnosed with breast cancer 2 months ago. I’m married with an 8 year old son and 11 year old daughter. It goes without saying that I’m absolutely devastated. Not only for myself but more so for everyone else this will affect.I’m starting docetaxel, trastuzumab and pertuzumab on Tuesday. Can anyone provide me with any information on how long this treatment has controlled their cancer for? Thank you.

Hi @salbrooks I have her2+ and ER/PR negative Mets in lymph nodes and bones. I was treated for this same primary cancer in 2018/19 and it appeared to disappear. It came back in 2022. I am now on Herceptin and Perjeta every three weeks and zometa (bone strengthening) every three months. I have a pet and ct scan every three months. My cancer is currently inactive in all but one lymph node due to this treatment. Our cancer is one of the few that has so many options with targeted therapy. Herceptin is tratzumab and perjeta is pertuzumab, same as what you are having. The doxetaxol is just for the short term to kill off what they can.

Hi @Cheryln38 Have you joined the private group on here “ Living with Metastatic Breast Cancer”?With side effects from any drug, some get them , some don’t, some who get them only get them mildly , there is no way of telling until you start.Have you got a dedicated McGrath breast care nurse? They are usually great for advice on how to deal with side effects from breast cancer drugs.Also if you add your town to your profile people may be able to give you more targeted advice.Call the helpline if you need help with that.

Thinking of you @salbrooks, I was diagnosed with er and pr positive HER2 negative metastatic breast cancer in Dec 2021, mine is different cancer to yours and just to the liver, I am on different meds and they have worked for 1.5 years, I really really hope your meds do the same. Stay positive as much as you can. Live your life and love it for as long as you have.I am doing a fundraiser for the month of June with NBCF called Go Pink and this is to raise money for research into better treatments and Zero Deaths from Breast Cancer, I have dyed my hair pink and will wear pink for the whole month to get as much money as I can to help save us all. Really really sorry and please reach out to me if you need, the need is devastating but you will get your head around it and you and your beautiful family will learn to live life a slightly new way.Happy to hand over my personal number of you send me a personal message. Sending you positive vibes and a virtual hug xxx

Thank so much for your message @Ktre. I’m still in shock and feel totally numb. Great work re your fundraising.

Thanks so much @Julez1958. I’ve put in a request to join the group.

New metastatic diagnosis | BCNA Online Network

21 Replies

odette
Member
2 years ago
Thanks Hankster. Just what I needed to read. I'm 46 and just started the metastatic journey. :)
Cheryln38
Member
3 years ago
Thank you Hankster
I just had another CT scan and bone scan, hopefully everything will be ok to start the new treatment. It's so wonderful to hear positive feedback, I hope you are well. I said to my children I am going to be around a lot longer just to annoy them 😂. They are so wonderful. Got to keep keeping on 🥰
Cheryln38
Member
3 years ago
Thank you isarbrown. Much appreciated 🥰
Hankster
Member
3 years ago
Without going into a long drawn out msg I got bone Mets at 46 and am now 55 and going strong(not perfect but strong). Still got lots of options with meds.

Try and stay positive, stay as fit as you can. It sounds like a cliche but trying to live in the moment don’t sweat the small stuff and you can have a happy life watching those kids grow to beautiful humans

my daughter was 7 when I was originally diagnosed she is now 26

take care
iserbrown
Member
3 years ago
https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
Cheryln38
Member
3 years ago
Thank you julez1958. I updated my profile, I am not sure how to join the private group. I will have a look.
I had just got comfortable as best as possible with the Riboclclib, but now got to start again on a new medication, I feel very blessed to be able to try another treatment. I have lovely nurses at Port Macquarie hospital. Hopefully if I get on the trial I will be monitored closely. Thank you again for your reply much appreciated 🥰
Julez1958
Member
3 years ago
Hi @Cheryln38
Have you joined the private group on here “ Living with Metastatic Breast Cancer”?
With side effects from any drug, some get them , some don’t, some who get them only get them mildly , there is no way of telling until you start.
Have you got a dedicated McGrath breast care nurse? They are usually great for advice on how to deal with side effects from breast cancer drugs.
Also if you add your town to your profile people may be able to give you more targeted advice.Call the helpline if you need help with that.
Cheryln38
Member
3 years ago
Hi there I was diagnosed last September stage 4 de nova er,pr + her 2 negative. At that time it was in my left breast, lymph nodes and bones. I started on Tamoxifen, then letrozole with Riboclclib, Zolodex implant and bone injection monthly. Unfortunately the treatment didn't work and my recent scans showed it's in my liver. I am now awaiting to see if I can go on the Capture trial if all my tests come back ok, I have the PIK3CA mutation. Just wondering has anyone started on the alpelisib and fulvestrant or anyone on the Capecitabine and any bad side effects. It's been a bit of a whirlwind from having no symptoms and just going for my normal mammogram as BC runs in the family and told straight stage 4. I have two teenagers who are amazing and give me plenty of strength. Look forward to hearing from anyone with information. Keep strong my sister's 🥰
Edithead
Member
3 years ago
Dear Sal, sending you hugs. I am in Perth, so too far to be of practical support, but hope you are taking care and getting love and support. Josie x
sal1979
Member
3 years ago
Thanks @JennyK. So great to hear that you are doing so well!