Bone Mets only

Kats2

Hello. I was wondering if there are any women out there who have or are experiencing metastisis STRICTLY to the bones and nowhere else? I'm told that my bc is not curable but treatable. Seeing as I'm ER+ and Her2- my bc is considered a "slow" or "indolent" disease. Many calcifications were noted in my left breast in 2008 and in repeat mammos but nothing specific was done. Finally a routine mammo in 2012 showed bc.  I had a lumpectomy follwed by radiation and Arimidex. In 2014, the bc showed up in my ribs, spine and pelvis. I do believe that the bc was metastising since 2008 or even before that but no further testing had been done on me at that time......as in a bone scan.

I've been through Arimidex for over a year, then Tamoxifen for 6 months, and am just now finishing Faslodex shots where my tumor markers are on the rise. My oncologist is now recommending that I take a chemo drug, xeloda, also known as capecitabine. Has anyone out there taken this?  And what do you think of it? Are there side effects? Do we know what % of women are helped?

I am really terrified at this point as my body has rejected the hormonal treatments. Am I reaching the end of line as far as fighting my breast cancer?

I was told I could get spot radiation treatment on the bones that really hurt. I was also told that I can't die from metastatic cancer in the bones only. They say that my prognosis is "unknown." I'm very confused.

I'd like to hear from anyone who's been in my position. Thanks so much!  Kats2

Desmonds1

Kats2- sorry you are going

Kats2- sorry you are going through this-

i am also Er+ with mets to my bones/femur- hip area- I had chemo, mastetomy and radiation - on tamoxifen since October-

i had a total hysterectomy this month so now I need to determine switching to an AI-

sorry- I have not taken xeloda- but I wish you well with it-

Susan

duck1255

Bone mets

I am ER+ with bone mets I have been taking Femara for almost a year and have recently added Ibrance. The Ibrance was fast track approved in Feb for use with Femara. So far so good a little trouble with white blood counts. Fermara has been working everything is stable we will see if there is further improvement with the next scans. This is the only treatment I've had no surgery or chemo

camul

I am about the same

Er and pr+, her 2-. I was on chemo weekly for 2 1/2 years. I had problems with Tamoxifen and Femara. So I am on Aromison. my tumor markers went down, They are now coming back up but they went from 500+ to 24 and lingered in the 20's for a few months. During the last 5 years, I did develop lesions in liver which were cleared with chemo and the cancer has spread through mostly all my bones except from just below elbows tand hands, and from mid calves through feet. They only got neuropothy!! I too knew there was something with my bones bcuz of pain. I was scanned in Nov 2009 and was no mets... Sept 2010, tumors from scalp to tailbone, all ribs clavicals both hips and upper femurs. I was orig dx in 2002. so I had aabout 8 years clear... but was having tumors removed that all showed atypical cells"not yet cancer). My onco figured something was growing, but it took a bit tfor them to show on a pet or mri. Mine has been aggressive through the last 5 years. It would spread, my onco would blast it with chemo, biophosphates, radiation, hormone blockers, even tried herceptin and I am her2 -, now I have had clots, am on coumadin, some of my bones have necrosis (bones dying from biophosphates) which has affected my teeth (jaw bone), andcauses more pain and swelling to my right hip. This is not an easy ride, but I had been told for about a year that it was time for hospice.

So I got a new onco, hense the Aromison, and markers going down. That has rn its ourse but has worked for me for 19 months. my new onco says still not hospice ready. I still am active when I can be. Just choose my activities as the days following are hard. I am n example that Drs. Do their best, but our attitudes and overall health really make a difference. This is a hard journey sometimes, but not hopeless! Hugs, Carl

Kats2

duck1255 said:

Bone mets

I am ER+ with bone mets I have been taking Femara for almost a year and have recently added Ibrance. The Ibrance was fast track approved in Feb for use with Femara. So far so good a little trouble with white blood counts. Fermara has been working everything is stable we will see if there is further improvement with the next scans. This is the only treatment I've had no surgery or chemo

Thanks for info!

Hi....Thanks for the info on the drugs you're taking.....I never heard of Femara, nor Ibrance. Is this hormone therapy or something else? I'm seeing my onco on Friday and will ask him about these drugs. Do you get side effects with them? My biggest problem has been loss of appetite and tiredness as well as pain in my back and torso if I overdo physically. Right now I'm trying to plant some flowers in pots and in my whiskey barrel. I'm going in slow motion doing something that I've done so easily for years....I hate it...! I guess I have to accept my "new normal."

Were you ever on Zometa? (Zolendric Acid?) It's a biophosphate. It's helped me an awful lot in healing the fractures of my ribs and elsewhere in my body. I've just had my 9th infusion. I end in Sept.

One last thing: How often do you have scans done? Is there a set time for these? I've only had one bone scan since being diagnosed in 2014 for bone mets.... that was 7 months ago. My last CT scan was in March. And is a Pet Scan similar to a CT scan?

I'm glad you're getting good results with the Femara and wish you contiued improvement. I only hope that I can get similar results and have this bc stop in its tracks...!

Thanks to those who wrote back to me. It means an awful lot and brings comfort knowing that there are others out there with my problem. God Bless all of you!

                                              Kats2

 

New Flower

camul said:

I am about the same

Er and pr+, her 2-. I was on chemo weekly for 2 1/2 years. I had problems with Tamoxifen and Femara. So I am on Aromison. my tumor markers went down, They are now coming back up but they went from 500+ to 24 and lingered in the 20's for a few months. During the last 5 years, I did develop lesions in liver which were cleared with chemo and the cancer has spread through mostly all my bones except from just below elbows tand hands, and from mid calves through feet. They only got neuropothy!! I too knew there was something with my bones bcuz of pain. I was scanned in Nov 2009 and was no mets... Sept 2010, tumors from scalp to tailbone, all ribs clavicals both hips and upper femurs. I was orig dx in 2002. so I had aabout 8 years clear... but was having tumors removed that all showed atypical cells"not yet cancer). My onco figured something was growing, but it took a bit tfor them to show on a pet or mri. Mine has been aggressive through the last 5 years. It would spread, my onco would blast it with chemo, biophosphates, radiation, hormone blockers, even tried herceptin and I am her2 -, now I have had clots, am on coumadin, some of my bones have necrosis (bones dying from biophosphates) which has affected my teeth (jaw bone), andcauses more pain and swelling to my right hip. This is not an easy ride, but I had been told for about a year that it was time for hospice.

So I got a new onco, hense the Aromison, and markers going down. That has rn its ourse but has worked for me for 19 months. my new onco says still not hospice ready. I still am active when I can be. Just choose my activities as the days following are hard. I am n example that Drs. Do their best, but our attitudes and overall health really make a difference. This is a hard journey sometimes, but not hopeless! Hugs, Carl

Hi I took Xeloda for 8 months

xeloda is my favorite Chemo.it did magic for me and put me in remission. Oral medication side effects were manageable . Good luck with it. I hope it will work for you

duck1255

Bone mets

Yes Femara is hormone therapy for ER + the Ibrance is a targeted therapy FDA approved for use with the Femara. I have been fortunate to not have a lot of side effects still able to work full time. No I haven't used Zometa because of the risk of ONJ I had jaw surgery for a met to the mandible last July and my doctors feel it is best to stay away  from it I'm glad it worked for you. My bone pain is gone from just the Femara

duck1255

Scans

I have had only one PET scan about a year ago since then it has been bone scan and CT scan every 3-4 months

RozHopkins

I wondered you ladies who

I wondered you ladies who have bone Mets could you give me any idea of how it feels, especially in the beginning and further down the line.  Is it obvious?  I have jaw bone desease already but I am struggling with pain in various places which we are putting down to osteoporosis/osteoarthritis virtually everywhere.  Good luck to all you ladies treating the mets.  I wish you all well.

Gm2873

RozHopkins said:

I wondered you ladies who

I wondered you ladies who have bone Mets could you give me any idea of how it feels, especially in the beginning and further down the line.  Is it obvious?  I have jaw bone desease already but I am struggling with pain in various places which we are putting down to osteoporosis/osteoarthritis virtually everywhere.  Good luck to all you ladies treating the mets.  I wish you all well.

Bone mets

i had pretty bad pain to what felt like my "tailbone" for awhile before discovering the cancer. I thought it was achenessyness on sitting from an old injury to my tailbone. Turns out it was a met on my sacrum. It's hard to tell if the pain is from mets or from osteoarthritis.  And of course, you can't have a PET or CT every time a bone aches. I've heard from friends that spine and rib mets are maybe easier to detect since they sometimes involve fractures.

Kats2

RozHopkins said:

I wondered you ladies who

I wondered you ladies who have bone Mets could you give me any idea of how it feels, especially in the beginning and further down the line.  Is it obvious?  I have jaw bone desease already but I am struggling with pain in various places which we are putting down to osteoporosis/osteoarthritis virtually everywhere.  Good luck to all you ladies treating the mets.  I wish you all well.

Bone Mets.....

Hello....Bone Mets, for me anyway, were severe pain in my ribs and back....also some achiness in my sacrum. The severe pain in my ribs was because several of them had fractured! That's what brought me to my PCP. When the pain didn't go away with Ibuprophen, then x-rays were ordered and things looked suspicious....In the meantime the pain got worse...and I had to be put on heavy-duty pain killers.....More investigation...CT scan and MRI revealed the real problem.....The rest is history and I'm dealing with the Oncologist who's trying to get the problem in check. My pain level has been reduced substantially. I take only Ibuprophen now. The achiness is still there in my torso, but it's tolerable......Now to stop those cancer cells from increasing......that's the goal. Wish there were a magic pill that could get me back to the way I was....!!

Good luck with your ordeal. No fun but we have to forge on....! God Bless  Kats2