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BC 10 yrs. later in bones ( new to site )

Debaludoll's picture
Debaludoll
Posts: 3
Joined: Mar 2013

Hello ladies,

at first I was shocked and now I'm relieved and thanking God everyday that it's not in my main organs. So I was just wondering if any of you have it in the bones and how are you doing? I can't believe that they need a cat scan every 3 months, when my counts all went down cat scans are all looking good. Could it spread that quick? How many years are you with bone mets? So the past 10 years was not easy and always a battle for me. My children were 5, 2 and 1 yrs. of age I was very aggressive with my BC and did everything I was suppose to do. Masectomy chemo radiation. Over the yrs lost implant due to staph infection you know, I think I've had my share and the bright side I'm here and loving life and enjoying my family. NOTHING has the right to invade our bodies we just have to learn to live with it. LOL I fractured my bone when playing tennis that's How I found Out. Boy was that painful. Didn't realize how we use our clavicle bone everyday. Anyone out there feel like sharing I could use a little love right about now. 

MAY GOD WATCH OVER US ALL and hold our hands through sickness and in health AMEN ! Debbie

SIROD's picture
SIROD
Posts: 2189
Joined: Jun 2010

Dear Debbie,

I know how shocking a cancer diagnose can be.  I had 3 of them, regional, then mets to two ribs and then 8 years later, in 2008 widespread mets to both lungs, lining and a pleural effusion.  The last knocked me for a loop and I am still here almost 5 years later.  It will 18 1/2 years this saturday since I knew I had cancer.  So one can't tell how long but I have had a lot of good luck, no need to think you won't either.

Since you are very strong and active, I'm certain that you do what is needed.  The ct scan is to see how your treatment is working.  When I have active cancer, sometimes it goes dormant, it's always there even in the years between my ribs and lungs (8 years) (I was NEAD - no evidence of active disease) but the cancer was there in my ribs biding it's time to play havoc again.Frown  Even now, it goes into sleeping mode did for 2 years while on Femara and then it became active and then went to sleep mode again and now it's active again.  Now I will have a scan to see how the treatment works, every 3 months.  The last time in October my oncologist said, I could have another scan or could wait for symptoms.  I would have been glad to wait but the cancer made me go ask for a scan which showed what I already knew, it was active again.  Frown   Ct scan's are just a tool for measuring for treatment, some oncologist want PET scans others MRI.  They all do the same thing.

Looing on the bright side Smile or the sunny side of the streetCool is best.   It is ok to have a pity party Cry as they call it, but I only give it a short time.  No sense in crying about things you can't change, have a plan, do it and go on living your life.  You might have to give up tennis for the time your bone heals and they will give you a bone strenghtener to help your bone thicken up.  

Welcome to the place no one wants to join.  Many have bone mets on here and I know they will give you good advice as well.

Best to you,

Doris

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

I was diagnosed with invasive ductal ca with 10 positive nodes in Nov. '09.  Had surgery, chemo, rads.  Went on Arimidex.  Last January (a little over 3 years past diagnosis), I had back pain.  They did CT, MRI, PET and bone biopsy.  Showed bone mets in T-12, L-1.  Then, as if that wasn't enough, I had a recurrence in the same breast in August of '12 and had the total mastectomy.  I have to say, this new diagnosis was even more devastating than the initial.  With the initial, sure, it was a huge shock.  But I had so much hope and determination that I would beat it and stay well. 

However, now it's been a little over a year.  I've been on Faslodex injections and Xgeva injections monthly for almost a year.  My last PET in October showed no evidence of active disease.  I will have another PET in April.  Meantime, mentally and emotionally, things are better but I still have my "crappy" days.  We are all human--sometimes this horrendous disease just gets the best of us.  Overall, I'm doing pretty well and the treatment is pretty easy compared to a lot of others.  I just pray it keeps working for years and years.

So sorry you're here with us, but I do know there are a lot of girls here with bone mets and have been doing well for years.  Let's all think that will be us as well.  Glad you came here.  This place is a wonderful support group.

Hugs, Renee

CypressCynthia's picture
CypressCynthia
Posts: 4010
Joined: Oct 2009

Sending big, big hugs and prayers!!!  I jsut celebrated my 26th cancer anniversary!

I was originally diagnosed in February 1987 with Stage 3 ER+, PR+, Her2N neg breast cancer.  I had a mastectomy, radiation, chemo and 7 years of tamoxifen.

I began having symptoms of bone mets in 2005 when I broke 3 ribs after Hurricane Katrina while moving boxes.  I was not officially diagnosed with bone mets until 2009, but, in between time, was kind of treated by my OB/GYN (and friend) who insisted that I take boniva and evista (thank goodness!).  Finally had a bone biopsy of the ribs in April 2009=bone mets from breast (this time ER+, PR neg, Her2 neg).

After that I was started on arimidex and zometa.  Also had radiation to the ribs.  I switched to xgeva and faslodex in 2011.  I am doing well and still working.  Some fatigue and intermittent pain, but still working and thriving!

Good luck and keep us posted.

 

New Flower
Posts: 4061
Joined: Aug 2009

Hi and welcome,

I am similar diagnosis since June of this year. My first time around was in 2008 at 46. I thought the same way, I have had more than enough at 2008 , mastectomy, Chemo, radiation, then after lymphedema, osteoporosis. Apparentely my journey is continueing - mets in multipile locations, so what can we do? just fight back and love our family. I am been on Chemo Xeloda and Xgeva shots for bones, feeling better now

Please come back, we do need to support each other

Hugs

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Hi Debbie,

I'm also stage IV, but not to the bones.  In my case it's in lymph nodes, a pleural effusion in both lungs, and local recurrence.   My current chemo combo is carboplatin and gemzar.

Welcome.  I know none of us ever wanted to be here, but this is truly a great group of people.  It's a wonderful place to vent, ask questions, share your joy and pain...there really is no topic off limits.

I hope you feel us all gathering around you, so that you can get the love and support you need.

Hugs,

Linda

 

Debaludoll's picture
Debaludoll
Posts: 3
Joined: Mar 2013

Hello Thank you so much for taking the time and responding to my post. I feel better just knowing you can vent and someone will listen and that friends out there are in simlar situations and know where your coming from. THANK YOU ! Debbie 

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