Bone Mets progression to organs question

LoveFromPhilly

Hello friends,

I am wondering how many folks progressed from bone Mets to other area Mets like lung/liver/and or brain or other areas?

I can’t seem to get clear answers from folks about how this looks/feels...what happens...how long does it take to progress from The bones to other areas of the body?

I’m just trying to wrap my brain around all of this...

Thank you for any input or insight!

Phill

arolsson

@lovefromphilly I progressed from bones to liver after about 8 months. I think it must be very individual how this happens--plenty of people never have progression to other organs but on the other hand progression to lungs and/or liver seem to be fairly common.

When mine progressed to the liver they did a liver biopsy and determined that the tumor biology itself had changed--I went from ER+ PR- HER2-, to ER- PR- HER2+. So my treatment changed as well, adding Herceptin+Perjeta to the mix and I think since then I've had Ibrance, Navelbine, xeloda, TDM1 and now eribulin. Last scan I had significant progression in both my bones and liver.

I don't feel either my bone mets or my liver mets. I feel plenty of side effects from the chemo of course, but no actual pain. My liver enzymes are all fine. Since september my calcium levels have been high from the tumors breaking down my bones so I am on bisphosphphenates to slow the bone metabolism down. My cancer seems to be progressive fairly slowly but steadily and apparently the liver mets are too spread for me to be a candidate for radition, eblation etx.

Interesting to note, I was a candidate for a study recently for heavily pretreated HER2+ patients. My hospital sent the same tumor biopsy they had deemed HER2+ to the Netherlands, who rated it HER2-. Apparantly this isn't unheard of either, you can have several types of tumor biologies in different areas.

Wishing you luck!

pajim

Liver for me too, but it took 5 years. I was on Xeloda, which was keeping the bone mets in check, thank you very much, but a single liver lesion appeared. I had only the one lesion until recently.

I've never had a liver biopsy so don't know if the path changed. I did have a recent bone biopsy which confirmed what we thought from my original cancer (er+ her2-)

exbrnxgrl

philly,

That’s a very interesting question, but I don’t think there is a single answer to it. Progression seems to be a very individual thing, with little rhyme or reason. I have had a single bone met for 8 1/2 years with no progression. Why I have had no progression when others have is a mystery. When will I progress? A mystery as well. It is a hard thing to wrap ones head around but I think there is no real answer. Sorry to not be more helpful.

pajim

LoveFromPhilly, I've been thinking about this question since you posed it.

The truth is no one knows (as you realize). One of the holy grails of oncologic basic science is to figure out how metastases form and how the spread. Why in some people and not in others? If the scientists could figure it out, we'd be a lot closer to a cure. [yep, I used the c word]

LoveFromPhilly

Hello my friends,

Thank you so much for taking the time to ponder and answer my mysterious question!

arolsson so interesting, your story, and having the multiple different types of cancerous cells/receptors within the same tumor. Just makes this all so much more strange to wrap one's mind around. How are you doing and feeling now? So did you end up not being able to join the clinical trial?

pajim how did the bone biopsy go for you? How are you doing on your new line of treatments? no more xeloda for you? You have always been one of my favorite posters/contributors. I am sending you love and hope you are doing as well as can be. Thank you so much for sharing your experience. And yep, the C word. I feel like we are living in a time/era where we are on the brink! And I feel like I am holding on to hope and optimism that somehow, someone, somewhere will break the code! I was watching a show on Hulu last night called Apple Tree Yard (very interesting show btw) and the lead actress is a genetic biologist, so there is a bit of interesting discussion around genetics and DNA. Finding the genetic mutations in the human genome is like looking for life on another planet in the universe. It is quite the endeavor. I hope we get lucky!!!

exbrnxgrl your posts are ALWAYS helpful. Just getting any response is helpful. Knowing that I am not losing my mind by really embracing the "unknowing" helps so much. It does seem like folks with one single bone met may fare better but who the heck knows for certain? I am so glad you have been as well as well as you have been for so long. Your story continues to give me hope!

I will have to remain in the mystery, I guess. It is a very oddly zen space to be...if I can calm my mind