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Mets to bone after 5 years free!

tasha_111's picture
tasha_111
Posts: 2049
Joined: Oct 2008

Today got told I have mets to spine and ribs... wonder if anyone here has had treatment for this and what it entails?  The internet is just scaring the ****** out of me.  I had IDC 5 1/2 years ago and was just DXd again 3 weeks back, now they have found this!  Any useful advice welcome... please no bloody prayers.  Hugs to all J xxxxxxxx

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

I am so very sorry to hear this! 

I have bone mets (3-4 ribs) that has been in remission since 2011.  I was initially treated with zometa and arimidex, which helped.  I asked onc if I could switch to xgeva instead of zometa because I prefer a quick shot to an IV infusion and there is some evidence that xgeva may be superior to zometa. http://www.ncbi.nlm.nih.gov/pubmed/22975218  The long and short of some of the studies that I have read is that xgeva (denosumab) is superior at preventing SRE's (skeletal related events such as fractures) to zoledronic acid (zometa).

Anyway, my markers were still high after a couple of years of treatment and my onc switched me to faslodex and xgeva.  That knocked the bone (and lung) mets into remission.

I also had radiation first and that really, really, helped with my pain (ribs).  The only side effect that I had was a little queasiness because the radiation onc said that he had to zap a bit of my liver because of the way my (right) ribs wrapped around it.

I was officially diagnosed with bone biopsy in 2009 but I had the rib pain, pleural effusion, etc starting in 2005.  I fractured ribs after moving boxes (after Hurricane Katrina) and I had multiple PET and bone scans before one brave radiologist finally called the ribs bone mets after a repeat bone scan in 2009.

Just telling you this because many are living longer and longer with mets.  Don't give up!!!

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

I'm sorry you received this news. I just wanted to wish you good luck with your upcoming treatments. I hope everything works out for you, quikly and smoothly.

HUGS

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

I am sorry Tasha for your diagnose.  Wishing you the best on this journey.  I had 2 lesions on 2 ribs found in 2000.  I went on Arimidex and was NED (no evidence of disease) until my 3rd recurrence in 2008.   Don't Google, some of it is very old stats.

Wishing you the best,

Doris

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

Great advice Doris!  When I googled bone mets, I think I read that average prognosis was 2-3 years after diagnosis.  I

Many of us are proving that the info out there is very outdated.  Tou have been 13 years and I have been 8.  Hang in there and don't google!!!

New Flower
Posts: 4099
Joined: Aug 2009

I got similar diagnosis in June of last year that was after 4 years with NED. It was very shocking to discover to have multiple tumors on several bones, located at both sides and other areas . I did not google anything just trusted my oncologist and asked for support of this board. I was treated with oral Chemo Xeloda for 8 months and tolerated it relatively well. It did stop the spreading of my cancer. Now I am on different treatment and some of my lesions have been healed and new bobe tissue was generated there. During my treatment I was able to keep my job.

Please stay in touch and connected. It is hard to accept and deal with mets,  diagnosis of stage IV can be very scarry, we are here to help.

Hugs to you

new Flower 

 

camul's picture
camul
Posts: 2119
Joined: Dec 2010

Iwas 8 years cancer free b4 being diagnosed with mets to bones and skin. Just finished 2 1/2 years of treatments. The chemo, herceptin and rads to hips pelvic and lower back helped with pain and slowed the growth.
Like Doris and Cypress Cynthia said, do not read most of the info on the net, info is based on statistics, and includes those who have other health issues, etc. I was given 3-6 months origionally and here I am almost 3 years later.
The fight is not easy, however reading all the misinformationakes it even harder.
I wish you the best.
Carol

hope67's picture
hope67
Posts: 168
Joined: Apr 2013

Since I was diagnosed only 3 months ago with IDC and ILC. Just wanted to tell you that I am very sorry that you have to deal with this. I want to wish you good luck!

Hugs, Carmen

VickiSam's picture
VickiSam
Posts: 8419
Joined: Aug 2009

I am so sorry about this news..  You will be in my thoughts, and prayers. Please remember we are here 24 hours a day, 7 days a week.

I wish I had a magic wane for all of us ... but, I dont .. so I will offer my support, love, prayers and positive thoughts.

 

Strength, Courage and HOPE for a Cure.

Vicki Sam

Christmas Girl's picture
Christmas Girl
Posts: 3659
Joined: Apr 2009

... Yet, I'll chime in with this: resist 'googling'... !!! Rely on your med pros, J.

Dammit. A 2nd DX is a real sucker punch, ain't it? Damned sneaky, relentless, evil cancer.

Kind regards, Susan

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Stuff on the Internet scares the **** out of all of us!  Stage IV is so damn scary.  Like others have said, listen to your doctors.  I think of you often. xoxoxo Lynn

tasha_111's picture
tasha_111
Posts: 2049
Joined: Oct 2008

Now I didn't know that.... that is well scary.   thank you all for your help

 

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