I don't mean to sound like a ghoul..

nowaldron

Hi Everyone,

First, I want to thank you all for your posts and comforting words. I was diagnosed in February of 2016 with Stage IV HER2+ de novo. I have mets to my bones and liver. I had Taxol at the beginning along with Herceptin, Perjeta, radiation, and Femara. I am currently on Herception, Perjeta and Femara with no new occurrence. I have read all of the literature and the new studies on median/mean time to progression, but wondered if anyone could share their personal experience. It will be three years in February for me and I am really starting to get nervous about a recurrence. My biggest fear is that I will have mets to the brain - I am a college professor - so that would really do me in. I still work full-time and take care of my critters and, overall, my quality of life is good, but the unknown is becoming overwhelming. I understand that none of us - healthy or otherwise - have any guarantees, but I am just kind of wondering what to expect now that I am coming on my three year anniversary. 

I would appreciate any words of wisdom. Thank you all and sending hugs and blessings.

Nancy

Partyoffive

hi Nancy,

I understand where you are coming from in regards to the uncertainty it’s frustrating and makes planning for the future difficult. I know that no one has a gaurentee on their life span but for us it’s a reality. I am almost 51/2 years out with no progression. I am Er+Pr+ and have been on Tamoxifen since diagnosis and feel pretty good. I hope you stay progression free for many years to come!

Kristin

HLB

Hi Nancy, three years, that's nothing lol! But seriously, I have read of many her2+ that are getting many years out of herceptin, like 15, 20 years and even more. Most of them on Facebook in Kelli Parkers large group of friends. I think it's gotten to the point where a lot of people wish they would turn her2+ so they could take herceptin and possibly be one of those exceptional responders.

I am er/pr+ her2- and have Mets for 6 1/2 years. Still work ft and feel good except for being tired all the time. Mets are still only in bones, but recent PET showed a spot in shoulder muscle of all places. Not sure what to make of that. I have never been NED, most of the time scans are some areas better, some worse, some the same. We switch when the bad seems more than the good/same. Hope I can keep going this way but depends on that weird shoulder thing I guess. Eventually it gets a little easier not to worry. 

ABeautifulSunset

hi Nancy

I was stage 4 de novo...over seven years ago. There are SO many treatments out there now. And since you haven't had a recurrence in almost three years, I will go out on a limb and say it's not being very aggressive. Mine is like that. When it comes back it comes back just a little and we shoo it away like a fly (well maybe not that easy, but..) I am not HER 2+, but that strain seems to be most responsive to the immunotherapies that are out there right now., as well I think you'll have options and I think you'll be around a while.

Sunset

illimae

If caught early brain mets are pretty treatable too. Honestly, I have more cognitive issues from chemo than brain mets.

AussieTracey

Nancy it is 11 years since I was diagnosed with mets. I had bone only mets for 10 years. In the last year I have developed lung and pericardial mets and this time last year I was very close to death due to cardiac tamponade. I had surgery and changed treatment to Xeloda and to the surprise of my oncologist I am still here and functioning really well. My oncologist talks about pace of disease and response to treatment. Xeloda worked for a year for me I have recently had a new lung met and changed to Abraxane and again my tumour markers are decreasing again. You also sound like the pace of year disease is reasonably slow and you have had a great response to treatment. My cancer was originally hormone positive and her2 negative and has now changed to triple negative so I can relate to your fear of brain mets but there are also positive stories on the brain mets forum that help keep that fear in check for me. Nancy you are also still on your second line of standard of care treatment so you have many options to explore but also if you did have progression you would be a good candidate for a trial. Wishing you all the best Tracey