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Topic: Stage IV diagnosis -- bone mets

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Apr 2, 2010 05:04PM

chrisgelling wrote:

Hello All,

I am sad to say that I am 90 percent there with a diagnosis of bone mets to the femur at least. This is what an MRI this week showed. Bone scan on Monday will mostly likely confirm. I was diagnosed Stage III two years ago this month. My immediate question is how long can one live with bone mets? I know this has been discussed on this site many times but would really like your input again.

 I have mostly been lurking with only a few posts. I have always been stunned actually with the grace and intelligence our sisters show on these boards. I am going to try hard to emulate these characteristics myself as I face this new challenge. Again though I think I am asking for reassurance that I might be able to live a long time with bone mets. Is this true in your experience? Does it matter if it is multi-focal or not? I don't know at this point if mine is multi-focal. Basically I am afraid of a quick demise (this is hard to put in writing but it is what I am actually fearing right now). Thank you in advance for your help. Chris

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Apr 2, 2010 05:29PM Lowrider54 wrote:

Hi Chris

Sorry to hear the news...this is the place to be.  My very first concern was how long...  Don't let it be.  The statistics are dire and there is no written in stone expiration date. 

I just bumped Kathy's announcement from a few months ago - seventeen years with stage iv...how long can you live?  As long as treatments keep working.  And there is an entire arsenal of them out there.  Odd to say, but bone mets is possible the most treatable.  I did a very unscientific  calculation - if every single treatment fails me, it takes me 3 1/2 years to get to chemo and chemo could kick butt or not and there are many flavors of those as well - add this, take this away and then trials and then, well quality of life becomes an issue and if there is progression, well in my case, I am thinking at least 8 - 10 years down the road.  Don't even quote me or rely on my stupid little calculation - just know that the statistics are not reality (they just help get accelerated life insurance benefits and automatic SSDI qualification).

Keep reading and I will bump up Kathy's post again.  Many options available and until you have all the results and a treatment plan, it is very scary.  You are in the right place - we all will get you through it...

Hugs.

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Apr 2, 2010 05:31PM rkt wrote:

Dear Chris,

I was diagnosed with extensive bone met (entire spine, pelvis, sternum, multiple spots on ribs).  Arimidex got me to NED five months after stage iv diagnosis.  Spent 11 months NED and had one small lesion come back on T3 in November, so have switched medicines to aromasin.  I plan on living a long time with this.  Last year, LuAnnH posted of having learned of someone who had lived 27 years with mets from breast cancer.  Somewhere there is a post with a link to a video of  this woman talking of her experience.  I will try to find it, because it really helped me to see someone living for so long (if I find it, I will bump it up).  She passed away on Christmas this past year, I believe.  So she lived a very long time without having available all of the new drugs/treatments that we have now. 

Becky

Becky, Stage IV, bone mets, ER+/PR+, HER2-, diagnosed June 2008, right mastectomy May 2009, 0/13 nodes, pleural effusion May 2011, mets to liver October 2011
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Apr 2, 2010 05:33PM cancersuks wrote:

Hi Chris,

I'm sorry you have mets!  I was diagnosed with spine mets in Dec. '09 and I thought everything would be ok because I read bone mets respond well to treatment.  Since my diagnosis, the cancer has spread on my spine, just found a lump in my left breast, and oncologist says my PETscan showed something in the lungs but it is inconclusive at this point.  Mets is a crap shoot...the fact is the cancer is active and the trick is stopping it.  I hope it can be stopped.  But yes, if you could have cancer somewhere,,,the bones would be my first choice.  Keeping it there is the goal!

Dx 11/29/2009, Stage IV, 2/8 nodes, ER+
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Apr 2, 2010 05:37PM rkt wrote:

Chris,

There is a thread called Inspiring Stories of Hope - I will bump it up.  AnneN posted link to video of Rita Arditti - she posted March 10, 2010, so you should be able to find her post with the link. 

Becky

Becky, Stage IV, bone mets, ER+/PR+, HER2-, diagnosed June 2008, right mastectomy May 2009, 0/13 nodes, pleural effusion May 2011, mets to liver October 2011
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Apr 2, 2010 06:26PM chainsawz wrote:

The threads the others bumped up for you show there are many stories of long term survival..... there is always hope!  Hang in there - you are not alone :>

Lisa -mets to lungs & brain - clear lymph nodes.....the weakest step toward the top of the hill, toward sunrise, toward hope, is stronger than the fiercest storm. Dx 7/21/2008, IDC, 3cm, Stage IV, Grade 3, 0/2 nodes, mets, ER-/PR-, HER2+
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Apr 2, 2010 11:14PM tami444 wrote:

Your question:  "on long can one live with bone mets " ..... answer is many years.  I am on four years now and am going strong!

Diagnosis @ 39 yrs old: Dec 2005, IDC, 8cm, Grade 3, R Mastectomy Jan 06, Stage IV, bone mets, ER+ PR- HER2+, chemo, rads, lymphedema, stacked DIEP Feb 08
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Apr 3, 2010 01:11AM Mazy1959 wrote:

Chris,

I was diagnosed with stage 2b ILC in march 2003 and bone mets (spine) in dec 2006. I am doing pretty good, am stable and my onc said I could live a near normal lifespan. I am presently 50 yrs old. Hugs, Mazy

Bone marrow mets in 90% of bone marrow. Dx 3/6/2003, ILC, 3cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Dx 12/19/2006, ILC, 4cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR-, HER2- Dx 4/25/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Dx 8/4/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Chemotherapy 8/9/2012 Abraxane (albumin-bound or nab-paclitaxel)
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Apr 3, 2010 10:59PM undecided8 wrote:

Chris,

I completely understand how you feel and how scared you are. I too was diagnosed 2 years ago in February stage 3. This February was diagnosed with bone mets to the femur. We found out after doing a PET scan it's also in my humerus, and a rib. I was in complete shock and scared to death. I've since found out from reading this forum and many others that you can live a LONG time with bone mets. I feel VERY fortunate right now that it's only in my bones. I've since started radiation and chemo and plan on being around a very long time. I got alot of living to do. You hang in there! Please keep us posted on your progress and how you're doing. Message me anytime you need to talk. 

Suzanne E.

Original Dx.2/08 Recur 2/10 in bones, 2 distant lymph nodes. ER/PR- Her2+ 9/10 bones & lymph nodes clear, met in lung. Dx 2/4/2010, IDC, 3cm, Stage IV, Grade 3, 7/8 nodes, ER-/PR-, HER2+
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Jul 8, 2010 06:47PM shakespearefan wrote:

Just wondering, Tami444, if you had to change meds quite often over the course of dealing with these scary bone mets.

Dx 11/1/2009, IDC, 6cm+, Stage IV, Grade 3, 10/10 nodes, mets, ER+/PR+, HER2-
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Jul 9, 2010 04:21AM anetnut wrote:

I feel encouraged after reading these posts, that even if I find out next week that I do have bone mets as I fear, that I can still live a long time. I just now have to hope that it is not anywhere else. Anxious to get the CT/PET scans done. It is nice to see some signs of encouragement though. God bless you wonderful ladies. 

Is it wrong to get excited to get to tweeze your eyebrows? Dx 6/14/2010, IBC, 6cm+, Stage IIIB, ER+/PR+, HER2- Chemotherapy 6/30/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/29/2010 Mastectomy: Left; Lymph node removal: Underarm/Axillary, Left; Prophylactic mastectomy: Right Radiation Therapy 12/30/2010 Breast Hormonal Therapy
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Jul 9, 2010 04:35AM Sheila8 wrote:

Chris I am in a similar situation and want to send you love and hugs. My first thoughts were of longevity. I believe we can live a full and long life with all the help available out there and it is fantastic to learn that there are so many wonderful success stories.

Ladies I was obviously lead to this page for a reason. How utterly inspiring! I am a firm believer in community healing and this site is a perfect example of this. Sending each other our love and support is vital and so helpfull when we have received news of mets. I truly believe our thoughts today create our tomorrows and this site helps us stay positive and united.

Thank you everyone for sharing your stories. I was feeling scared and alone until I met you all.

Love Sheila XX

Dx 11/30/2005, IBC, 6cm+, Stage IV, Grade 3, 16/21 nodes, mets, HER2-