How Many Are We?

I'm in as of 1/14, started down this road in 1999, my fifth time at the rodeo, newly metastatic, bones. I guess I've been "lucky" to have had numerous recurrent primaries, same spot, and it's finally on the move. I hope it continues to poke along at this rate but they say picks up speed and strength, gah.

New to this thread and fairly new to the boards. I was stage IIIA in 2002 and went into full remission right after that. They were even about to say "cured". I had a lumpectomy of my right breast only (3 cm tumor) and it was positive in 4 of the 26 lymph nodes removed. After the lumpectomy I did 8 rounds of chemo and 33 rads and 5 years from 03-08 on Arimidex. It was smooth sailing until last June. Then out of the blue I got DXed with Stage IV. It was a fluke how they found it, I thought my "pneumonia" was back but instead it was pleural effusion, right lung. After Pet scans and tumor markers I got a shock. At that time they drew the effusion off (July) and it's still gone except a tiny bit. But I had a few positive lymph nodes in my chest. The shock was bone mets: Skull, sternum, ribs, spine, pelvis, tail bone, upper left arm. Organs are all clear. Tumor markers were astronomical at 898 in early July.
I was put right back on Arimidex in late June, and Xgeva shots in October. So far the markers have dropped when tested every two months, but last check in Dec they were still at 136 point something. The PET Scan in October showed "significant regression". The lymph nodes were fine. Still slighttttt pleural effusion, nothing to worry about.  So Friday I go back for my 3rd PET scan and my every other month tumor marker test.
I am petrified. I want to be NED so badly but I don't know any other woman just like me with this many bone mets. As my onc said "too many to count". He wants to ride Arimidex as long as possible and then "when" it fails, switch to something else. Chemo is last resort this time. I trust him.
Is there ANYONE like me with extensive bone mets? How long have they been around now? This is still new to me and my onc will not give me a time frame or as someone says, an "expiration date". I asked if he had patients like me alive after 5 years he said yes, I said 10, he said some. But he has only been at that practice for 11 years so he has no others longer living. I did call the office one night last year and another dr said he just lost a patient who lived 17 years with mets, didn't say where.
HELP. I need friends on here, I need encouragement, I  need to know what to expect. Please write!! I will be 55 soon and a mother of 3, grandmother of soon to be 3, and fairly new wife to my 2nd husband since 2011. THANK YOU ALL!!!

I'm stage IV dx 1/16/2014

I am also Stage IV metatstatic diagnosed 12/13...taking Femara for one month and about to return to Cancer Treatment Center in Tulsa on 03/03/14 for first check up after hysterectomy on 01/31/14.  I am experiencing all the side effects of Femara and hope that they will subside some.  I lost my job due to health issues last year.  Depression and huge sense of loss overwhelms me.  I am curious if there is some form of treatment or exercise I can do to alleviate the muscle and joint pain.  I am taking vitamin D and Essiac as I have read many n articles claiming this will help.

Lucy:  It's true you may not find out about progression until you have scans, sometimes you may have consistent pain in an area that your onc will run scans earlier.

tgl203:  Femara worked for me for 4 years...the first 6 months I had lots of joint stiffness, like I was 80 years old and some arthritis in my knee.  Things settled down after 6 months on Femara.  I'm now on my 2nd AI, Aromasin & Affinitor.

Terri

Hello - please add me!  I'm stage IV

I am Stage IV mets to bone (left hip bone) and lungs.  dx 1/20/12.

((((Hugs))) to all you Warriors. We are here for you !

Hate to add my name to this list.....but, newly diagnosed stage IV, one met to liver.

I'm here too. Newly diagnosed with bone met to rib. Sigh.

Lisa

I am the ultimate lurker, and after stage 3 dx was already reading many of your Stage 4 posts.  I somehow knew that I would end up here so not totally shocked, however my DH and children ( all grown) are in shock.  Private MRI found 3 tumours, 2 on spine, one in pelvis, so even though no pain at all, and just finishing radiation, I find myself here with you all.  Hope to learn a lot from you all! 

Carrie.

Another one, since jan 09 

#58 

MBC SURVIVOR FOR 2 years

Mets to bone & lung

I was first dx in 2010 and been a member since but now returning since just getting the stage IV dx with mets to the lung.  Please add me.

You can add me too. Bone mets diagnosed 2/14.

Take care everyone.  xx