Ned and pain

[marianne88]

Just wondering if anyone is considered Ned but still have pain in bone

[Lisa-n-AZ]

Hello, I achieved NED in Aug 17. I have fatigue, muscle and joint pain from the ibrance, Letrozole, and zometa. The tumors in my spine will always be there...they are just not cancer at the moment. Hope this helps.

[Kats2 in reply to Lisa-n-AZ]

Lisa-n-AZ,

I’m confused. How can you be diagnosed with bone mets to your spine but they’re not cancerous?

I also have bone mets to my spine and other bone areas. I’m also on Ibrance, Letrozole, and Zometa, and like you I have fatigue, bone pain, etc.

I believe that the bone mets are cancerous but that the drugs used for treating them are “containing” the cancerous cells so that they stay where they are and don’t spread. This is known as stability. At least that was told to me.

Yes, I believe some of the cancer cells are killed off, but unless the treatment continues and is successful, cancer cells are still there, but are not active. These cells are clever and after a while build up resistance to our current drugs. I’m currently on my 6th drug regimen for my bone mets.

It’s our hope and prayer that our treatment plans work for a very long time and that we don’t need to switch too soon to another drug plan.

Unless your tumor markers reach a normal level, the term NED isn’t accurate.

A scan doesn’t tell the whole picture especially if you have Lobular BC.

One Oncologist told me that we just don’t know what is happening “microscoptically” in the cells of our bodies. Scans don’t pick this up, That’s why you hear so many women saying that they had a “recurrence” 5-10-15 or more years later. It was the same cancer to begin with, but has suddenly awakened.

The original BC cells were always there but only sleeping,, or inactive, most probably due to the effectiveness of the anti-cancer drugs that you were taking. And as we all know, somewhere along the line, that particular anti-cancer drug/ drugs stopped working.

I’m in the same boat you’re in. My Stage 4 BC can be treated but not cured. Maybe with more research this will happen.

I hate to sound pessimistic about this, but right now, that’s the reality of the situation. I’m hoping my cancer becomes “stable” but I don’t think I would go so far as to say that there’s “no evidence of disease” in my bones or body. What precise criteria is used to come to that conclusion?

I try to live as well as I can while undergoing continuous treatment.

Wishing you well. And I do so hope that you are indeed NED. Kats2

[BeckyHobson]

Oh yes! I am NED and I still take pain meds to sleep and gabapentin during the days. I think it is the medications we are on. As long as the scans show NED-I can deal with the discomfort. Currently dealing with a pain in the 7th posterior rib that the meds haven’t seemed to shrink but it hasn’t grown either. You know how it is “every headache is a brain tumor lol”. I’m sure I tweaked it while doing some little thing and it will get better on its own soon👍.

[BeckyHobson]

I think both terms are used to say the same thing. Yes those of us with NED still very much have active cancer and without the meds-it will spread rapidly. Our cancer is “contained” like yours 😊

[Kats2]

Becky,

I love the words “contained” and “stable.” Hope everyone hears those words over and over again!!

God bless... Kats2

[TruthisGreat]

There is a book called FREE YOUR BODY OF TUMORS AND CYSTS by Hanna Kroeger. It is holistic but even if it helps erode benign tumors - that would be great. My first PET scan analysis was quite detailed. I had benign tumors, a collapsed lung, and inflammation in my left hip, etc. My understanding is that cancer will attach to these benign tumors, and inflamed areas of the body. After the breasts and a few lymph nodes later, cancer appeared in that left hip. Subsequent PET scans were with a different oncology group and I felt so cheated by the VERY brief analysis. The cost of these scans bill at $17,000 and the radiation we get is about 22 chest x-rays in one day. I feel like the price is very dear and I want the details. I am using Hanna's suggestions. I wanted to know if I was making any progress with this last scan but couldn't tell. I expect to get another scan in a few more months. I hope you can find things that help your pain. Have you tried cannabis? There is a specialist in Bellevue, WA. I don't go to him but a friend does and is treating her cancer that way.

[SusieIM]

I haven't tried cannabis but am thinking about using it along side the treatment I am having, with the help of a specialist that is knowledgeable.

[Epinto]

Have not seen you post in awhile. Hope u r doing ok. Just sending good vibes your way!