Goodbye to NED

rosiesgirl

I was diagnosed with IBC in Nov of 2014, and have been NED since my mastectomy in May of 2015. I was diagnosed last month with bone mets to the spine and femur. A precautionary brain MRI has uncovered brain mets. It's a scary road ahead! Anyone else with IBC diagnosis have experience with progression to the bones/brain?

Thanks, Joy

Legomaster225

I have no experience with recurrence yet but just want to say I'm sorry. This whole thing stinks. Stick together sisters

Micmel

Rosie~I don't have the same cancer as you do, and I was diagnosed stage two one week and then after all testing was done, it was revealed that it had gone to my liver. I went to stage four within two weeks. I had my liver tumor removed, and reached NED for three months only, after abraxane heavy chemo, it was then revealed that it had settled in my bones. Which is where it remains. Breast cancer usually goes to either Lungs, liver, brain, or bone. The best thing to do is figure out how big the brain lesions are. Gamma knife can be very effective and have seen women here have tremendous results from that. The best is attack them earlier than later. The bone mets can be very treatable. I have been on ibrance and anastrazole for going on 11 months this month of September. When I saw my oncologist last, he said I had no measurable disease. I have spots on my spine as well, but I have no pain anymore since the ibrance has been working to keep me very stable. I also would receive XGeva every month along with blood work to monitor your levels of red and white cells and other key blood components.

I know it's scary, boy do I, but I can promise you, you will be around for alot longer. I am not a doctor. But after spending a good amount of time reading and talking to others with cancer. Every cancer is different. But I was told stage four is treatable. So far for me it has been. It can be for you as well. You just need to put a good team of doctors together, and don't. BE afraid to make sure you're your own advocate. Push for things you want, for quality of life, some of the side effects aren't fun. But we go on. To a different drum beat, but we make our own music now. I will be sending you good thoughts.

Try to read other stage four threads. You'll find friends. You'll find support and comfort. One day at a time, its the best way to cope with everything coming to you at once. Just get through each day. I hope you have a good support group at home as well. Wrapping you in a big hug. I was diagnosed with stage four 1-22-16, in January it will be two years and honestly I feel great. I had to battle to get here. But I put my head down and did what they said. You can to. It's all we can do. ~M~

rosiesgirl

I have complete radiation treatment to my femur and spine. I had gamma knife for the brain mets last week. I see my MO on Thursday and will start some type of chemo. Not sure what the drug will be, but she said there are several good choices for my mets. It's just strange to be back in active treatment. I feel like everyone is walking on egg shells around me, when all I want to do is live my life to the fullest while i am feeling good. I am going to Disney on Friday and want to forget about all of this for a few days and have some fun. Thanks to all the support I have found on this site. It has been my salvation since my initial diagnosis. Love to you all. Joy