Anyone Stage IV De Novo With 10+ Years NED?
 

I've been amazingly lucky with my treatment response and have been NED for over 10 years after being Stage IV de novo with mets to liver and bones.

I had one course of chemo with Herceptin and have been on Herceptin and NED since then.

I would love to talk to some other women in the same situation to share experiences.


Thank you.

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Wow! How wonderful that you continue to have such a great response to treatment. I wasn't stage 4 but just wanted to say how happy I am that you are doing so well. Herceptin has certainly been a game changer for so many of us.

Take care,
Brenda

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Thank you!!

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

I was not Dx'd De Novo but have been NEAD for 15 months since I was reDx'd in October 2015. I aspire to have as long a run as you are having. :)

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Hello, my name is Lisa and I was diagnosed Stage IV de novo (spot on liver) in April 2017. Started TCPH in May, finished in August. Lumpectomy and 11 lymph nodes removed in October and biopsy clip removed in December (another story, lol). 25 rounds of radiation (no boost) in Jan/Feb. PET in Dec and March-both clear. My oncologist suggests Herceptin/Perjeta infusions indefinetely. For those of you that are stage IV NED, is this your protocol?
Thanks in advance. I'm ER/PR negative and HER-2 positive.
Lisa in Sacramento, CA.
P.S. Please let me know if I should post this in another thread.

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

I am also Stage IV de novo and have been on Herceptin infusions for 11 years.

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Whonoze, you are my heroine! 11 years of Herceptin! I have had 6 years of the same and am stable, living well. Not de novo though.
Best wishes to you for many more years..... Pam

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Thanks and same to you!!!

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

I was not Dx'd de Novo but became metastatic a year after completing Herceptin for my early stage Dx. I have been on Heceptin, Perjeta and Xgeva for nearly three years now. I am doing well enough and staying stable.

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Thank you all for the information--you give me hope. Lisa

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

I have been Stage IV from the beginning. Dx in October 2011. Just on Herceptin currently. Last scan showed NEAD. It's been 6.5 years. Hang in there. The spot on my liver was 4.6 cm which was huge.

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Hi. I was diagnosed with HER2 BC and liver mets in June of 2007. I have been NED since my first treatment and continue on Herceptin every 3 weeks. I'm also on Tamoxifen. I have been extremely lucky and enjoy a wonderful quality of life. I don't plan to discontinue Herceptin anytime soon. Always happy to hear about others that are doing well long term.

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Next week I mark 14 years DX de Novo stage 4. Treatment history in signature.

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Ten years NED this year.
Diagnosed stage 4 in 2007 (diagnosed stage 2 in 2003).

HER2+ used to be such a dreadful diagnosis back then. Now, we have many treatment options to help stabilize and keep the cancer away. Many newly diagnosed patients now WANT to be HER2+!

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

I was dx’d de novo stage IV in 2013. I only did systemic treatment as all scans and biopsy could not find any cancer to remove or radiate six months after dx. Such a happy dance at that moment to know the initial worst part was behind me. I continue treatment with herceptin and perjeta and live a full life ie surfing yesterday, surfing this am followed by date day to Los Angeles with my husband of 36 years. Life is good! FYI one of my favorite therapies is riding my bike, 11 miles each way (22 total mikes) to my infusions every three weeks, it’s my way of telling cancer buzz-off! Hope I hit that ten year NED mark! Five this year!

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

6 months NED with stage four bone mets.

this article from yale :


In this retrospective review at two institutions, it was demonstrated that 13% of patients with de novo stage IV, human epidermal growth receptor 2 positive metastatic breast cancer achieved no evidence of disease (NED) status with trastuzumab-based therapy plus/minus local therapies, and these patients had a very high progression-free survival (100%) and overall survival (98%) at both the 5- and 10-year time points. Achieving NED status may be an important therapeutic goal. However, further randomized studies are required to fully understand the impact of systemic or locoregional therapy on achieving these excellent long-term outcomes.

Re: Anyone Stage IV De Novo With 10+ Years NED?
 

Diagnosed Stage 4 de novo in 2011 with a 3 month old baby. After surgery and a course of TCH, I have been stable on a cocktail of Herceptin and Tykerb since, almost 8 years! So much has changed since I was first diagnosed and there is so much to be hopeful for!