New to Stage IV

In 2006 I was diagnosed with Breast Cancer and was hormone pos stage 3b, 4 of 20 nodes positive.  I opted for a double mastectomy, reconstruction, and did my 9 rounds of chemo.

In October I kind of knew something was wrong.  I went to see the oncologist in January and was told I had low iron, and was sent home with a stool sample kit, and a promise of a call back in 2 days with test results.  No call back.  I called them and was told I needed a CT scan.  While waiting for the CT scan to be scheduled, I had severe bone pain.  I was taken by ambulance to emergency and admitted to the hospital the next day.  CT scan was done, and a bone biopsy.  Results were BC Stage IV, metastasized advanced bone cancer.  No tumors or mets to other organs found.  My oncologist put me on Faslodex and xGeva.  My second set of Faslodex shots my left leg had shooting pain and went numb.  The injection was done incorrectly and hit my sciatic nerve and artery.  I was sent home from the Drs. office unable to walk.  A follow up sonogram showed I had a blood clot from the knick on my artery.  I did go back for my third shot of Faslodex and was much relieved to find a more experienced nurse providing the injection.  The lack of compassion, care, follow up and competency had me go for to an oncologist I had researched and selected for my Mother months prior.  I received 3 calls from him the afternoon and evening after my appointment.  When I returned his call the night of March 18^th he said that no more Faslodex, I was not hormone pos, I was TN according to my done biopsy.  I was to get a port that week and start chemo before the end of the week.  After the start of chemo a Brain MRI revealed a lesion.  Chemo was paused and 2 weeks of complete brain radiation was given.  Now we are back to chemo.     

So here I am on this journey, looking for information, resources and how to live with stage IV. 

God bless,

Cindy Lee