Bone Mets Thread

ADJ  , 

Thank you! I am glad to hear I am not alone, At least I know that is the chemo and not just me. Thanks a bunch Redroan

Wanted to introduce myself on this thread. I was diagnosed in Oct with one single bone met to the left pelvis. I have had stereotactic radiation to that spot and was switched from Arimidex to Faslodex and Zometa.  Things are going well. Still having a lot of pain in the hip and I am extremely tired.  My oncologist felt like he would pretty much eliminate the pain with the radiation but that hasn't been the case. I was wondering what y'all's experience has been with radiation and pain. Do you have to stay on pain meds from now on? 

m360

Just wanted to add we should and can be concerned about any and everything, but my mo told me that unless the tumor markers moved by several hundred, she was not concerned.

Anita

I was told I was cancer free after my nd. My dd the nurse insisted on a pet scan . It was done and they found mets to hip and possibly Clovis bone in my brain. After bone biopsy of hip and mri, bone, and ct scan it was determined that I only had mets to hip. After 8 months of, first taxol then Abraxane I was declared in remission Ned. I am now on Femera and once a month Zometa. So far so good. I have pain in my back, shoulders, arms, and knees, but they say that is osteoarthritis. If you want a pet scan demand one. I'm glad I had it done.

I hear people on this thread say that a bone scan doesn't show everything but that a PET scan will. I was told by dr that bone scan is the best for bone tumors. Any imput on this?? Isn't a bone scan the best way to look specifically at the bone???

my bone mets were undetected on a bone scan. The PET scan provided the clearest picture. 

I've had all test when first diagnosed in 6/09 with bone mets.  Later, I do Pet scans every 6 months as they show metabolic activity & new cancer spots.

Terri

I have had many Pet Scans since 2010 ... I find them to be the quite reliable for finding the cancer anywhere.  Now that I also have liver mets, my MO relies more on CT scans, but they do not accurately reflect what's going on in my bones, so then, I get the MRI's!  It would be real nice to have once scan that does it all. 

I do not understand why we even do bone scans.  I have been hearing from this site along with clinicians that while they are good for looking at bone diseases, they seem to be worthless when looking for mets.  Why not diagnose with MRIs?? [cheaper than Pet Scans at least].  Bone scans only put us into further depression when the radiologist ask for more tests to rule out mets.  WHY WHY?  Osteoarthritis is imminent with all the drugs we take for cancer; plus age wise it starts showing itself in our 30s, sometimes sooner. 

I have PET scans done yearly.  They scan I believe from my neck to my upper thighs.  I thought MRI's are only done on specific areas, not whole body; correct me if I'm wrong.

Terri

Hi MsTee,

I have been taking Xgeva for a year and some months now and I've tolerated it very well.  Would that AIs were as symptom free.

Good luck to you!

Scorchy

JimmieBell,  Medicare in Texas doesn't pay for PET Scans they do in California.  I've been having them every six months.

Oh, I hear you, MsTee.  For me I think I've think I've hit my limit with Letrozole (Femara), which I have been taking since May.  The joint pain was just in my knees and I thought I would just suck it up.  But it's just gotten progressively worse and now my hands are affected.  And when I can't knit I have to put the brakes on the therapy.  Bad enough I have to deal with stage iv breast cancer--DON'T MESS WITH MY KNITTING!

Scorchy

aaoaao (!),

My mom crocheted for years, as did both grandmothers.  I had no real interest, though I played around with it for awhile as a teen.  And in an astounding move I actually made a simple afghan in 1983 and never touched it again.  But a few years ago a good friend of mine inspired me to learn how to knit.  I wrote two blog essays about it: The Anchor, Part I and Part II.  For me that back and forth, back and forth is so meditative.  Challenging myself to learn new stitches takes my mind off cancer--if just for awhile.  So when the joint pain in my hands just exploded I realized that I have to talk to my oncologist about this coming week.It's also causing my a lot of fatigue.  My quality of life is in negative numbers.

Scorch

Scorchy,

I stopped Femara for the exact same reasons.  I could not knit even two rows without hands going into spasms and they would claw up.   After I stopped the Femara the hand took at least three months to get back to normal.  My oncologist asked if I'd like to try again with Femara and I looked at her and actually said you're kidding me.  I had swelling in my feet and knees that I couldn't get my pants over my knees.  You have to decide what quality of life you want.  But not knitting really hurt, first year in the last 20 that I didn't make my girls a sweater or something knitted.  However, I still can't just walk past a yarn shop without buying something.  My daughters knit so yarn never goes to waste around here.