Bone Mets

[Shafight]

Hi. I’m somewhat new to this. I’ve been treated for bone Mets for 9 months. My pet scan showed some shrinking and some cancer growth. My doctor says it’s good. What is good in bone cancer? What is the goal other than to live? Should I expect my treatment to stabilize the cancer or shrink it?

[Zebra2018]

Hi shafight, I have also bone met since 2019 and my protocol is almost the same, except I am getting xgeva shuts every three months. So far the treatment is working. I am almost same age as you are (73). My hope is that this nasty disease will not spread further.

[Shafight in reply to Zebra2018]

Zebra, that’s great that the treatment is working for years for you!

[Hidden]

Hi Shafight -

I think you hit the nail on the head...the goal is to live. Or, as I often say, number of days with good quality of life.

I've had widespread bone mets (basically everywhere) for more than seven years, essentially stable this entire time, possibly discounting a few new mets cropping up and some growing along the way (but many shrinking...or sclerotic.

I picture it as a pan of sauce sort of simmering...bubbles pop up, go away, etc., but overall the heat is low enough that nothing boils. So that's my "visual" and my goal. So far, so good!

Clearly, if you can maintain your status quo for a long time, that's a victory! I certainly wish this for you....

Be well,

Lynn

[GollyG in reply to Hidden]

Good analogy - will use when I give my cancer a talking to. No boiling over!

[Shafight in reply to GollyG]

I was so crippled with pain while I was being diagnosed with bc Mets. I thought I’d strained my bac. I couldn’t walk without a Cain or walking sticks. I’m so joyful to be without pain and without fatigue. It was awful

[Shafight in reply to Hidden]

Thanks so much. 7 years is amazing. I love your analogy!!

[mbogorad in reply to Hidden]

Hi Lynn,Did you have to change treatment during those seven years?

Marina

[Hidden in reply to mbogorad]

Hi Marina -- I had one half-change of treatment...

I had been taking Ibrance + Letrozole for 3.7 years when a couple of new bone mets showed up (allegedly...long story) and we swapped out Faslo for Let, keeping the Ibrance...so I've now been on Faslo + Ibrance for 3.5 years.

To this day I regret ditching the Letrozole at that point because I now see....I think many of us see?....that a few new bone mets don't necessarily indicate a change in treatment...It's just a couple of small bubbles in the sauté pan!

I've had scans that show "progression" followed by a couple or few that show stable, then a bit more progression, then more stable...My doc has insisted said, "We both know you're progressing, it's just at a very, very slow rate".

She's been talking about a change to Piqray for almost two years, but we've been holding off...

Take care,

Lynn

[mbogorad in reply to Hidden]

Thank you Lynn

[Shafight in reply to Hidden]

This is really important information for me. Thank you. Now I see that sometimes there are blips and new Mets show up. One month my blood test cancer indicators were way up and the next month down. My last pet scan showed a few new Mets and some shrinkage. My dr said that overall it was good

[DDIL1 in reply to Hidden]

Such positive news. What are your markers. I’m ER/PR+ HER- with bone Mets. As you know on Ibrance, Letrozole and xcheva. I hope for such a great response. You are my role model! Hope you have another 20+ years.

[Hidden in reply to DDIL1]

Thanks for your question re: tumor markers! When I've mentioned them before, on this site, I was always *guessing*, because my brain left me long ago!

But I just happened to be swimming in cancer stuff for a couple of hours (!) and can report -- accurately -- that my CA27-29 (similar to 13-15) is 364 and my CEA is 52.7.

These have increased *so much* over time, with mostly stable scans...So I keep wondering if this is *normal* (?) in those of us with really long-term quasi-stability? Does this stuff just build up?

I actually hopped onto the site to try to upload a summary I prepared (yes, I'm *that* patient!) for a new doc, secondary onc, I'm meeting with on Tuesday....If that works (unlikely?), you can see the whole history...

Take care,

Lynn

[DDIL1 in reply to Hidden]

Is your tumor Er/Pr+ Her-. ? My CA27.29 went from 95 to 100.

[Hidden in reply to DDIL1]

Well, when I was initially dx'd, Stage IIa/IIIb, the biopsy showed 95%/75% ER/PR +...by the time I was dx'd metastatic, it had morphed into 45%/0%.....severn years later, I often wonder if it's even hormone receptive? But I'm on treatment for hormone receptive, so far, so good...But I really do wonder about how much of the heavy lifting the meds are doing vs. just nature/my body? Not that I'd give them up, but even my doc agrees that I'm certainly not a good candidate for success (shrug emoji)...

[Hidden in reply to Hidden]

Initial dx 12 years ago; mets dx 7 years ago...

[DDIL1 in reply to Hidden]

Ha, my ER/PR is almost the same as your initial diagnosis. I heard the cancer can morph. You are my inspiration. Being Lobular this is a sneaky cancer so I’m on high alert. Thank you for sharing anything I can learn from others is so helpful. I find oncologists are so busy with day to day patients they are not always the best advocates we need to do that and help each other. So thank you. Anything you can share that works diets, vitamins I’m grateful for. So happy your doing well. More meds keep coming out, hoping they will be effective and come out fast.

[DDIL1 in reply to Hidden]

I should mention I’m lobular cancer

[mariootsi in reply to Hidden]

Cool analogy!

[Antares12]

According to my oncologist the bone Mets never really go away, but they will scar over which is a good sign.

[Shafight in reply to Antares12]

How much do we have to worry about breaking a bone?

[Antares12 in reply to Shafight]

More than a normal person. My oncologist has me on xgeva to help with that, but I mentioned I had teeth pain, so she's holding off on it for now until I can see my dentist.

[PJBinMI]

Welcome! I'm a long timer with MBC and bone mets, diagnosed 3/1/2004, 18 years next week! I remember how overwhelming it was the first year or so. I'm in an entirely different place emotionally and in my thinking about it now. The things that were most helpful during those first months were having good results per tumor markers and then scans, and meeting other women living with MBC. Once we have mets, we will always have cancer and never be "cured", though there are occasional and rare people with 3 mets or fewer in their bones who do end up without any signs of cancer. Your good early response to treatment, your age, and having only bone mets are all very hopeful signs for you. Each of those is a positive factor in predicting how you will do. I was diagnosed the month of my 58th birthday and was post menopausal which is one reason we older women do well. (One of the few benefits of getting older, LOL.) My current health issues, the ones that are problems on a day to day basis have nothing to do with cancer, crazy as that seems. Hirrible itchy allergic rash, and foot problems related to fractures from a fall on the ice ten years ago. My biggest cancer worry in the last 15 years or so was when my wonderful onc retired about three years ago...............I still wonder what she would have to say, LOL.

[Shafight in reply to PJBinMI]

Amazing. You give us all hope. 18 yrs Have you been on different meds?

[mariootsi in reply to PJBinMI]

You are amazing !

[Shafight]

Thanks so much. Now I know not to expect them to go away. I got the MyChart results from my last pet scan and freaked out. It said some Mets had increased and some decreased. It shocked me because I’ve been feeling so good. My nurse practitioner broke it down and I saw that only in one place it had increased a little.

[mariootsi in reply to Shafight]

I never look at my chart. I always wait to see my onc for results.

[mariootsi]

Amen!