I’ve been metastatic for over 2 years and I’ve never gotten to No Evidence of Disease (NED). That is partially because my cancer is sneaky and aggressive. It’s also because I have bone Mets.
When breast cancer spreads to the bone, it literally eats the bone cells. This means that once those Mets are nuked by chemo or targeted therapy or whatever I’m taking to kill them, I end up with literal holes in my bones. I wrote a blog about it and included an instructional picture here. I get a monthly infusion of a medication called Zometa that helps my bones repair those holes.
The limitation of the scans like the PET (positron emission tomography) which utilize radiation to “see” the cancer, is that cancer, infection, healing bone, dead areas, etc., all show up black on the scan. That’s a pretty big limitation.
For those of us with bone Mets, our goal is NEAD, which stands for No Evidence of Active Disease. I’m still praying that I get there someday, but it hasn’t happened yet.
No Half Measures 
My daughter’s friend’s mum is going to have monthly infusions of something beginning with “z”. Guess that’s Zometa. I’ve been lucky so far.
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Might be zometa! It’s a pretty significant infusion.
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They moved my zometa to every 3rd month so I can take it longer. This November is year 3 for me. Zometa is the one treatment I look forward to, knowing it’s healing me hopefully. ❤️
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Good for you! I kept asking my medical oncologist about moving it but she isn’t a fan yet!
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Mets to the bones is so cruel. It is irreparable right? Hard to trust your own body knowing what it looks like inside. I’m hoping and praying for you and I that one day there’s no evidence of disease.
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I agree with you, so very cruel! My bones are lighting up less and remodeling of the bone (meaning it’s growing into the spaces) can be seen, so it does seem to me that the zometa is working! Love and light to you. 😘❤️
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Very cruel, I am wondering if you use calcium chelators to clean the blood of excess calcium also if you use CBD oil which is great for bone as well – this would be more supportive, I do not know about curative however I do agree that no/less ACTIVE cancer is always better
much universal love to you on this journey xx
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So true, less cancer is always better. I use medical marijuana to manage my pain and other side effects and that has been a great experience! Thank you for reading and commenting!
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We can all learn from each other and sometimes learning becomes support all on its own adding to hope on a very hard road. Namaste
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I’ve got bone mets too. My oncologist uses a combination of CT and PET scans with contrast to see what’s going on a bit better. He sees mesh rather than lesions and as bones heal they heal in a mesh format like a woven basket. You’re lucky you can tolerate Zometa. It gave me more pain than the mets themselves. Nothing that could be tolerated using anything. So we switched to xgeva. It works differently than Zometa and has fewer side effects besides arm and knee pain. Buuuut, you and I and a whole lot of us will take side effects in exchange for life and quality of life. It’s funny but in researching xgeva, Amgen initially was denied release of the medication for general treatment of osteoporosis and it was relying upon profits from the drug to bolster its stock. The FDA didn’t require more trials, just further documentation. Males ya wonder…
Here’s to NEAD,
Much love,
Ilene
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I always wonder! I was on xgeva for a few months but my current medical oncologist likes zometa better. We’re lucky to have really smart people helping us. Love and light to you.
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We are super lucky. I wonder about all the propaganda on each side of the chemical divide so I lean in both directions and hope the decisions we make are ultimately the right ones. It’s a crap shoot at times even for our super smart oncologists. I love mine -he’s saved me twice and he listens so carefully to my opinions, includes my opinions in the proscribed program and even asks me questions about the patient side of the equation. Respect goes both ways and I really can’t ask for a lot more than that. I’m sad that I need to see someone new closet to my new residence but we are working on that together too…
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❤️
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