New metastatic diagnosis

sal1979

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.

Ktre

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

sal1979

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

Great work re your fundraising.

Julez1958

Hi @salbrooks
So sorry to hear this news.
Shock is normal - as is denial, grief, anger.
Please consider joining the “living with metastatic breast cancer” private group on here too.
Being in Melbourne  you will have access to some excellent care and many ladies live long lives with MBC.
There are many more treatments available now than even 10 years ago .
All the best.

sal1979

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

Blossom1961

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. 

jennyss

Dear @salbrooks,

from jennyss in Western NSW

sal1979

Thanks so much @jennyss. 

sal1979

Thanks for sharing your story @Blossom1961. You have given me so much hope which I really need right now.

Blossom1961

@salbrooks I met a lady who has been on Herceptin for fifteen years and she was doing really well.

sal1979

Thanks @Blossom1961, that really gives me hope

Jenny K

Hi sal1979, I was first diagnosed with horman receptive BC in 2011, in 2015 metastatic BC in bones were HR2+, having been on Tamoxifen tabs, Herceptin and Perjeta, three wkly infusions since and doing very well everything is stable. Wishing you all the best.
Cheers Jenny 

sal1979

Thanks @JennyK. So great to hear that you are doing so well! 

Edithead

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

Cheryln38

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 🥰

Julez1958

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.