ER+ PR+ HER - longterm survival

5.5 years here. Started with standard chemo, followed by faslodex and an AI. NED for 3.5 years. Then just a small progression. Switched to Ibrance and an AI. Been stable ever since. and still er and pr + and her-, as far as I know.

I'm 2 years out with ER/PR + HER2-. I also only had a solitary met to the brain. Scans below the neck show NED. Brain MRIs are currently clear.

I was started on Tamoxifen but struggled with the SEs. I eventually had a total hyster and switched to Arimidex. So far, so good on it. Chemo was never indicated for me as my oncotype score was only 9 at the time of my original diagnosis. I've had gammaknife radiation to the surgical bed of the brain tumor (after craniotomy to remove the tumor).

Best wishes to you.

I am approaching my 6th year with bone mets. I did well on the AI's (two years on Arimidex, two years on Faslodex and a couple of others that didn't last as long). I started chemotherapy for the first time in April 2016. We haven't checked if my hormone status has changed, but my doctor suspects that after this much time, the cancer probably has figured out a way around the AI's, which is why we decided it was time for chemo. Wishing you all the best!

Thanks everyone. Let's keep this going. Chico xx

Nine and a half years since diagnosis, a little over 6 years since recurrence. When the bone mets first appeared, my skeleton lit up like the Milky Way-- practically every bone. I had a hyst/oophorectomy the next week, which turned up yet another surprise: a sprinkling of mets around my right ovary. The bright side is that those cells gave us something to run through pathology without digging into bone. Sure enough, still ER+PR+Her2-. As you can see in my status section below, I had a fairly good run on AI's. Femara 1.5 years, Faslodex 5 months, Afinitor+Aromasin 1.5 years. Then on to Xelodaville, where I've been for over three years. I have some new bone progression this fall, so I may be moving on to something else soon.

Six years today and stable. I posted about it here if you'd like to read it:

Medicine, Miracles and MyThoughts-Six Years: https://community.breastcancer.org/forum/8/topics/...

share! You made a chemo pun!

I'm 8 years from original diagnosis and one year from stage iv. Not NED a this time as we're watching a single node of one cm that appeared in my lung in less than 6 months (from CT to CT). I can't get an MRI due to a pacemaker so I have to wait until my next scan in Feb to see if there are more of if it's gone.

I'd like to share here as this is my 10th Christmas since diagnosis of stage 4 de novo. I've stayed NED for almost nine years and that is I suppose the circular secret to my longevity. I do think NED is in many ways just a form of stable, but not visible to scanning. Maybe there are folks whose cancers are in a deeper sleep than others or unable to multiply for some reason or unable to develop resistance to treatment. I could be in any one of those groups. I believe bone, gut and liver health are important for us in addition to estrogen deprivation for ER+ disease to prevent recurrence/progression.

On the latter, I've had Femara, Arimidex and Tamoxifen (after chemo, radiation and surgery), switching due to side effects. At the time, Afinitor and Ibrance were not yet available. For my bones and initial bone mets, I had 5 years of Zometa. I also started exercising daily, including lifting weights, to supplement the Zometa. I was worried that Zometa prevents bone breakdown but does not by itself build new bone, unlike exercise, and important for immune health. Exercise also regulates estrogen levels, as in women athletes who stop having periods. Some more recent evidence of that here: https://www.sciencedaily.com/releases/2013/05/130507061143.htm.

Also as a way of regulating estrogen I started eating 7-10 portions of fruits and vegetables daily.

https://www.sciencedaily.com/releases/2014/09/140911135316.htm

Which helped me lose some weight, another risk factor which I forgot to mention. Didn't have much room for sweets and refined carbs with all that bulk.

At some point I tried intermittent fasting for a whole year except for vacations. I starved myself from 7 pm to 12 pm. I did improve my metabolic health, lowering my blood glucose levels as a result. I hoped to starve cancer cells and maybe some did get hit as this study suggests:

https://www.sciencedaily.com/releases/2016/12/161221111246.htm

Tumor suppressors seem to accumulate in mouse liver as a result of food withdrawal.

Together with a having a good diet, I also try to get 7-8 hours sleep and limit alcohol intake. From the NY Times:

short-term changes in either sleep or diet can affect the liver’s ability to contribute to fat digestion. Chronic disturbances... may lead to fat accumulation in the liver, which can cause “many different problems: fatty liver disease, diabetes, obesity, heart disease and even cancer.” ( http://www.nytimes.com/2016/12/22/health/your-liver-doesnt-know-its-the-holidays.html )

I'm not very good during the holidays but I do try to reset my circadian clock by going for long walks in the morning.

I would like to say that a thread like this always inspires me. Heidi, knowing you have been NEd for over nine years is especially nice to hear. Early this year I had to see a doctor as I was applying for disability payments through a state employee system. This oncologist, a real oddball, told me no way i had stage iv bc, it was probably stage 2 and arthritis because there had been no progression. He said stage iv have a life span of five years or less. A real gem of a doctor, right? He said if I had been stage iv and am still living I an outlier. He said it like it was too incredible and looked at me like I wasn't special enough or deserving enough to have an exceptional response to treatment. So I was turned down for disability payments even tho Social Security had determined I was disabled. I got a lawyer and am in the appeals process.

Sorry to hijack the thread. I am very happy to hear of others who have been around awhile and wish you many, many more years of stability. Merry Christmas to all who celebrate it, and happy everything else toeveryone else.

Thank you Ladies for posting your replies and sharing tips, advice and research. Just knowing you are exceeding expectations is so very uplifting and helpful. Please keep giving advice. I am a sugarholic and know from this forum that I need to cut this back however as a very long term lacto vegetarian I dread also cutting chocolate and cheese from my diet. On the other hand I have a wonderful life that I wish to continue enjoying for as long as possible so 2017 will see me cutting back and joining the fitness girls. Happy 2017 to you all. Chico xx

7.5 years since original Stage IV diagnosis with mets to bones and liver. Was on Tamoxifen for 6 months then switched to Femera which I have been on for last 7 years. Cancer has been stable since I have been on Femera and Tumor markers are all normal. Have not had any tests to confirm whether the cancer make up has changed since original diagnosis.

Was also on Xygeva up until Jan 2016 when I fell on some ice and fractured my Femur they feel that the Xygeva could have been a reason that the bone fractured so easily. I stay very active and exercise on a regular basis.

Cure -ious -- I think you have it reversed. From what I understood HER2 is more aggressive and has less treatment options then hormone receptor positive. But I am very, very new to all this and may be wrong.

p.s. I'm planning on being a long term survivor -- but I'm only 6 months in

Whoop! Tamoxifen for five years!! Congratulations Party, and just keep trundling on tiny turtle, you can win this race! :- )

Cure-ious, I'm doing well except have managed to gain several kilos since Thanksgiving, when I visited relatives in the US.  Then more eating celebrating my 10th Christmas since MBC diagnosis.

I did cross off another item on my bucket list, which was to ski in the Matterhorn area.

I am ER+