NED

[kduck]

Is there anyone who is NED? How long? What's your treatments? What's your mets? How often do you take scans? Sry so many questions

[SeattleMom]

Hi, kduck!

I was diagnosed with MBC in November 2017. After 10 rounds of radiology to my spine (where my mets are located), I started protocol of ibrance, letrozole, and Xgeva in December. My first follow-up pet scan was in April, and I was NED at that point. I have my next pet scan scheduled for September. I think scans are typically every 4-6 months once you are labeled NED.

And trust me, there are NEVER too many questions. Just ask away--someone on this website will be sharing your same situation, be it where your mets are located, or what side effects you share, or what your treatment protocol might be. God bless you!

Linda in Seattle

[kduck in reply to SeattleMom]

Hello linda, I too was dx in Nov 2017. Are you still taking ibrance?

[SeattleMom in reply to kduck]

Yes! I started out at 125mg but had it lowered to 100mg after about 3 months. Still impacts white cell counts but not yet enough to lower dose to 75 mg. Many patients have their dosage lowered so don't be concerned if your oncologist recommends this at some point. They do not want to risk compromising your immune system.

All the best, Linda

[kduck in reply to SeattleMom]

Sometimes it just scares me so. I'm just taking falsodex and xgeve. I had a scan 2 weeks ago, still in ned and bones are healing. We have a lot in common I also went into neds in April. Thank you for replying. God bless you for many years.

[SeattleMom in reply to kduck]

Same to you, kduck !

And I share your fear; I just try to push it from my mind and get as much joy as I can from life. My fear will sometimes push through when I am laying in bed in the morning and allow it to weigh me down. I think that metastatic cancer has such an emotional impact because there is so much uncertainty about the future and the "pet scan days" can be so unnerving.

Please know you are in my prayers; I think we are just lucky that we are living in an era where many treatment options continue to be researched and made available! Hang in there!! XXOO Linda

[Buffwright]

I started in May 2016 and have been NED since my second scan...maybe 4 months in? I’m taking Ibrance 100 and Letrozole. Miracle stuff ! I have a PET CT once a year and a CT or two in between.

Stick with it!