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bone mets from breast cancer HELP!!!

piggin out 4 cancer
Posts: 3
Joined: May 2013

Hello to anyone and evryone...I'm new to this forum. Iwas Dx with breast CA 2007. Had lumpectomy, chemo, XRT, tamoxifen. Doing great until last spring when I was Dx with bone mets to various regions of Cspine to sacrum, 4 ribs, both hips. Had XRT and steroids. Now on faslodex and xgeva after ovaries removed. Just had MRI and many new spine lesions noted. I'm feeling like maybe my meds are not working??? I know bone mets are difficult to control. Even though my MRI reads UGLY...I feel great, tolerable discomfort, still work. My oncologist has me wondering???  I made 2 appts to see other doctors soon for second opinions. I would like to know if anyone has been on faslodex and xgeva? Feeling VERY frustrated!! Hugs to all.

CypressCynthia's picture
CypressCynthia
Posts: 4015
Joined: Oct 2009

I had bone mets officially diagnosed in 2009 (ER+, Her2 neg).  Started on arimidex and zometa, but ended up on xgeva and faslodex.  They faslodex and xgeva did put bone mets in remission for me.  Unfortunately, this year I was diagnosed with liver mets.  My liver mets is ER neg and Her2 +.  Go figure! 

I am now on herceptin,perjeta and taxotere (and xgeva).  Off faslodex for now.

Over the years, I have gotten several second opinions.  My onc never seems to mind and actually seems to value and weigh the additional input.  It never hurts to seek another opinion.

Good luck!  Sending hopes, hugs and prayers!

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I was diagnosed at Stage 3C with 10 positive nodes in Dec. '09.  Had lumpectomy, axillary node dissection, 6 rounds of TAC and 33 rads.  Last year, with back pain, after much testing, bone mets were discovered at T-12, L-1.  Then I had a recurrence in the same breast with follow-up mastectomy.  Since then I've been on Faslodex injections and Zometa (which also changed to Xgeva about a year ago).  I've been on this regimen for about 15 months.  My PET scan in May showed NO EVIDENCE OF ACTIVE DISEASE!!!  So, for me, right now, it's working well.  If you have developed new lesions, this might not be the combo for you.  I certainly would question it and I don't think it's a bad idea to get another opinion or two. 

Good luck to you.  Please let us know what you find out.  There are several of us Stage 4'ers who would appreciate the info.

Hugs, Renee

camul's picture
camul
Posts: 2118
Joined: Dec 2010

diagnosed with bone mets in 2010.  I have been on a few combos.  I was on Xgeva for over 2 1/2 years, along with many different chemos.  Is your doctor planning on keeping you on this combo?  Mine changed the cocktails when new scans showed continued growth.  I also had 2 second opinions at the urging of my family even though I trusted my onco.  One was worthless as she was sending me her opinion and I never got it, nor did I get phone calls returned, and the second one was from City of Hope, and they suggested the exact same protocol as my oncologist, which gave me a sense of peace knowing that my onco was on the same page. 

My thought on all of this is if I am not comfortable with what I am being told, then I question it, or get a second opinion.  It is my life and I have to know that I am/have done everything that I can do to be here as long as I can. 

I hope you get the answers you need, and if your doctor is threatened or upset that you got another opinion, than maybe he/she is not the doctor for you.  I know my doctor was very pleased when I gave him the info that I received form City of Hope, and encouraged me when I told him before I did any chemo, I wanted to get a second opinion. 

Carol

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