How long with no treatment for ^econdary bone mets?

Anyone else hear of mri ultra sound treatment for bone mets?

Lily55- I hope that you are feeling better soon. I understand how hard it is to go through this by yourself- I wonder if a support group could help you in the interim? I wonder if a palliative care doctor could help find a treatment that you feel well with. I don't know how many treatments you have tried. It would be good to see if there is a passion or project or "bucket list" you have as planning for the future as if you are going to be here for awhile is vital to survival. Maybe a second opinion with someone you could trust at least for fresh eyes on your situation. It is said that people with ILC progress later- so several years doing ok and then start to go downhill. For me (bone mets) I also have bone marrow mets and before treatment I got very short of breath walking up hill because the bone marrow was filled with cancer and couldn't make cells- so very anemic (also they said that I had permanent bone marrow damage from my original chemo). I think that without treatment I would have had bone marrow failure- I actually don't know when the bone mets started since I was on Arimidex without any monitoring or scans or TMs etc. So, I don't know how long it would have taken for failure.

Hugs to you

Likely 6 months to years, depending on one's current status of how advanced the bone mets are, whether they spread to other organs without treatment, grade/aggressiveness, tumor type, genetic mutations/amplifications, etc. It is all anyone's (possibly educated) guess. No one really knows how any one person's experience will play, not even the medical community. Advanced bone mets can be so excruciatingly painful. Close coordination with a palliative doctor to manage the pain would be a good idea. At the end of the day, it is your decision but I was a few weeks away from dying of bone mets when I was diagnosed - suffering from uncontrollable hypercalcemia despite aggressive medical intervention to control it and heading toward a hypercalcemia coma - but had a miraculous turnaround over 4 years ago. I had mets in pretty much my entire skeletal system with swiss cheese bones. It took a good year for my bones to heal, slowly but surely. I went from barely being able to walk, unable to walk a step up or down, unable to stand up/sit down without putting all my weight on my arms and off my hips and in excruciating pain throughout my entire body 24/7, to completely healing. I didn't know at the time but also had 2 wedge fractures in my vertebrae. I was in misery. A year later, I was running three times a week. I didn't think I would ever be able to run again and was hoping just to be able to walk and put weight on my hips again so I could sit/stand without snapping my hip bones and sleep without extreme pain. There is hope. I still have the "stable wedge fractures" as those don't really return to normal state even after the cancel heals but they haven't caused me problems or given me any limitations with physical activity. I do everything I did before. I know that won't last forever but I have had a good run of nearly 4.5 years so far.

Lily, it seems a bit odd to me that your doctors started with Taxol, but I assume they are trying to "hit the mets strong" for some period of time? Did they give you a rationale for this? An end date? If not it's time to have a heart to heart with your doctor. Tell him or her you are miserable and you want other options.

Is there an end in sight for Taxol and a start to hormonal treatments? I presume you are still ER+. Because if you're this unhappy it's time to switch to something else. You can switch to 'nothing at all' or you can switch to something less toxic. Femara and Ibrance come to mind. Even Xeloda would be less toxic than what you are doing now.

Another thought -- do you know if your mets are responding to Taxol? Sometimes knowing it's helping (and that there's light at the end of the tunnel) can help you make it through.

If your doctor pooh-poohs your concerns it's time for another doctor. YOU are in charge. Remember that. The doctors work for YOU, not the other way around. They have the expertise, but they should be able to give you options that you can choose from.

Aah, maybe they feel that the hormonal treatments won't work. Particularly if you've had a lot of it already. But they should explain this to you!

Maybe where you live Taxol is the only option. Sigh. I was given the choice of Taxol or Halaven. [whichever one I chose the other will be next] So I don't want to say they are wrong. There are other chemos but they're even more toxic. Xeloda (capecitabine) should be available everywhere in the world -- it's a generic drug.

The pain could be what they call 'tumor flare' -- the cells dying. I've never experienced it myself but a lot of women have. If they measure your tumor markers or do a scan after three months you should be able to tell if it's working.

Hair loss is annoying. I feel for you. I was told that on Halaven my hair would gradually thin out. Of course it ALL came out over the course of two days. Surprise!! I will wear a baseball cap in the summer.

I'm not sure how to help you. The week off may assist your thinking. it's hard to think when you're in pain and feeling so ill.

Edited to add: I can offer some hugs!!

Hello All:

I am a Stage IV MBC patient with Mets to the bones. I have undergone treatment for the last 3 years: Taxotere, Ibrance & Letrozole, Abraxane, and, most recently, Taxotere again. I am scheduled to begin a new chemo on Thursday called Doxil. Have any of you had experience with this drug? What I’ve read has me so scared

Thank you, JFL. Had you received other chemo drugs in the past? If so, did you have SE from them? I am the “queen of side effects”.

Is anyone here currently on Doxil

I’ve found the Doxil page. Since I do have bone Mets, I am interested in hearing/learning about treatment options and experiences. Thank you for the suggestion to join the Doxil thread.

Hope you’re doing well!

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