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Topic: Could really use some inspiration today

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Aug 8, 2007 12:19PM

debman wrote:

HI everyone-
Just got back from the doctors and got the "you should get your affairs in order talk". My tumor markers rose from 137 in june to 225 last week. My last PET/CT was at the end of June and they said it's doubtful it's in an organ but of course, there is no guarantee (as we always know). I've had bone only diseas from 5/04 onwards (first diagnosis 9/03 - stage IIA). I've been on Xeloda since then and it was my miracle drug but apparently, it's no longer working.

My doctor's plan is radiation for 2-3 weeks (left hip and left rib due to increase pain and a fracture in my rib) followed by Gemzar. I asked him about time (not sure why I ask but I did) and he said if he had a 100 patients in my condition, only 25 would be here next year. He did say he hasn't given up on me, that he is still optomistic and he has lots of drugs to try but that he also couldn't have rose colored glasses on and I needed to know that he can't guarantee they would work. Which we all know but it's so, so hard to hear sometimes, isn't it?

Anyways, I said to him - ok but 25 ARE here next year, right? I'm trying to focus on that but I could use your help.

Anyone else out there who continues to beat the odds? If so can you post?

They gave me 18 months in 2004 and I told them that they were wrong because I was going to walk my twins into kindergarten (that was my LONG term goal) and I'm doing just that on August 22nd. I'm trying to work on longer term goals now but I'm having a hard time.

So.....anyone who has success stories who could post? I'd love, love some inspiration tonight and as always, I come to one of the mose inspiration group of women I know.

Thanks in advance.
You are all in my thoughts and prayers.
Deb
Dx 5/27/2004, IDC, 2cm, Stage IV, Grade 2, 1/28 nodes, mets, ER+/PR-, HER2-
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Aug 8, 2007 12:55PM BearMan52 wrote:

Hi Deb,
I know many success stories will be along the way. From a medicine standpoint I just read on bcmets.org of a new chemo for advanced breast cancer: ixabepilone. It's been in clinical trials and should be made available late 2007...maybe there is a trial near you?? It's specifically intended for use after other chemos have failed.
Keep pressing!
Barry
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Aug 8, 2007 12:59PM katie11 wrote:

Dear Deb,

I am so sorry that you are facing these new fears. Your doctor's 'talk' seems a bit premature to me, as there are still many drugs out there for you to try. There is a post on these boards somewhere by a woman called Kathy who has been living with bone mets for 14 years now - I am going to find it and bump it for you.

I myself have been living with bone mets for over a year now and my onc has not mentioned dying to me at all - he says that stage 4 can be controlled for many years now rather like a chronic disease. I have two kids to raise, too and aim to be around to do it!

Thinking of you and I'm going to find Kathy's post now.

Hugs,

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Aug 8, 2007 01:52PM LuAnnH wrote:

Bone mets only are not usually fatal. If you have no organ involvement I have to wonder why your onc is being so dismal. I would consider a second opinion just to be sure you have the warm fuzzies about the tx plan your onc is putting you on. I don't think my onc would ever quote something like your onc did about the 100 patients and 25 still alive. I have had bone only mets for over a year now and when I have disscussions with my onc I told him my first goal was 10 years. He told me that was a very doable goal.

LuAnn

P.S. I have a word document with lots of success stories in it. I would be happy to email it to you. Just PM me with your email address and I will send it.
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Aug 8, 2007 02:17PM Marsha56 wrote:

Deb!!!!!!!!!!
I am 12 years out with Stage IV with liver and bone mets for three years with the mets! DO NOT listen to him, I was given one year 12 years ago, who would of thunk it. But I am here and going to be a grandma for the second time and I never dreamed I would see that day. So stay strong and don't listen to your doc. He is so wrong, know put your boots on and go kick some cancer butt!!!!!!!!!! Feel free to pm me anytime!
Marsha56 Dx 7/25/1996, IDC, 6cm+, Stage IV, Grade 3, 17/21 nodes, mets, ER+/PR+, HER2+
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Aug 8, 2007 02:52PM jacqniel wrote:

Deb- what was he thinking? With bone only mets? I am just flabbergasted. I have much more involvement and my onc has never put a timeline on my life.
Pat yourself on your back for making your first of many goals. How about making seeing them walk across the stage at their graduation your next one. Then it can be to know your grandkids. Why not? Only God knows what is in our future - dream big!
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Aug 8, 2007 03:29PM roseg wrote:

Anybody with small children, whether they have cancer or not, should have legal documents to safeguard their futures. Perhaps he was just being doctorish and giving advice, which I've found doctors don't hesitate to do whether they know anything or not!

Elementary school is a pretty long road. I'd set my sights on middle school for starters.
Rose
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Aug 8, 2007 03:40PM Poppy wrote:

Hi Deb, my friend's aunt has been battling BC for almost a decade now. There was a point where they were ready to stop chemo and she wasn't expected to make it. She's been NED for at least a year now!! There are so many drugs they can throw at it and if you have any doubts about getting aggressive treatment then maybe you need to find an oncologist who does focus on the 25% and not the 75%.
Hugs
Erica
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Aug 8, 2007 04:05PM debman wrote:

you guys are awesome. This is just what I needed. My oncologist is also my friend so I just got off the phone with him (he called to check on me). He said - I need to tell you the stats because as doctors we need to protect ourselves since we can't predict but he said that they are averages and in his mind, I'm above average (isn't that sweet). He ended the call with - you are younger and stronger than most of my patients - keep that in mind.

I love hearing the success stories. I read a quote a long time ago from Susan Love saying....if just one person has overcome the odds, there is nothing in your way for being the second.

All of you have restored my HOPE tonight - thank you. I find that HOPE is one of the best tools in the fight against this disease.

Thank you all so much.
Deb
Dx 5/27/2004, IDC, 2cm, Stage IV, Grade 2, 1/28 nodes, mets, ER+/PR-, HER2-
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Aug 8, 2007 04:38PM KariLynn wrote:

Deb,

I'm glad you're feeling more positive - I just passed 2 years which was given to me as the average with stage iv. I think that's a bunch of bunk and does not tak into account newer treatment and overall health of today's cancer patient.
If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying? Dx 6/2/2005, IDC, 2cm, Stage IV, 14/25 nodes, mets, ER+/PR+, HER2-
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Aug 8, 2007 05:02PM AusAla wrote:

Deb,
Another bone metster chiming in here. I was dx with multi mets almost four years ago. You hang in there, girl. We've got your back and we are a bc butt-kicking force to be reckoned with! I love your quote from Susan Love! You let us know whenever you need us to remind you that you are not alone! You set your sights on your next long term goal and start thinking about what your NEXT goal after that will be. YOU are an inspiration!
Sending peace, hope and many prayers,
Bethie
"I don't want to be in a battle, but waiting on the edge of one I can't escape is even worse! Pippin, Lord of the Ring: Return of the King Dx 5/13/2002, IDC, 2cm, Stage IV, Grade 3, 3/17 nodes, mets, ER+/PR+, HER2+
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Aug 8, 2007 05:26PM awjkej wrote:

Hi Deb,

You are young and you are strong, and I would set your sights on walking your grandchildren to kindergarten! I walked my youngest to Kindergarten 2 years ago and now our oldest is a sophmore in high school. With all the new drugs, trials, and discoveries, you will have many choices in the future! I agree with everyone re it is too early to predict esp b/c you only have bone mets.

I was diagnosed in Jan 2003 with aggressive bc, I am pretty sure at the time I had bone mets, but they were not diagnosed til Sept 2004. My onc treats this like a chronic disease, and he doesn't discuss odds with me, one b/c he knows better..ha ha, and two b/c I don't believe in the statistics.

Bethie is right..this is the place to be, to keep up the energy to keep on keepin on! This is a hard road with many potholes, but keep up the positive spirit, come here for support, and do press on!

Hugs,
Anne
www.faithhopecourage.com / Faith is the bird that feels the light when the dawn is still dark.--Rabindranath Tagore Dx 1/10/2003, IDC, Left, 2cm, Stage IIIB, Grade 3, 0/14 nodes, mets, ER+/PR+, HER2+ (FISH) Surgery 2/3/2003 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 3/27/2003 AC Targeted Therapy 10/1/2004 Herceptin (trastuzumab) Hormonal Therapy 12/1/2004 Arimidex (anastrozole) Chemotherapy 11/4/2005 Taxotere (docetaxel) Radiation Therapy 11/21/2005 Bone Hormonal Therapy 6/16/2006 Aromasin (exemestane) Targeted Therapy 8/9/2007 Tykerb (lapatinib) Chemotherapy 8/9/2007 Xeloda (capecitabine) Radiation Therapy 10/17/2007 Bone Chemotherapy 4/8/2008 Navelbine (vinorelbine) Radiation Therapy 11/10/2010 Lymph nodes
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Aug 8, 2007 05:44PM jacqniel wrote:

Deb, what great stories you brought out with your question - one year, three, four - ten! All mets survivors. Absolutely wonderful. Glad you are feeling better. Hugs, Jacque

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Aug 9, 2007 04:38AM Fitztwins wrote:

Deb, you are young and healthy except for the stupid cancer no?

You will walk those twins to Kindy and watch them learn how to read and spell. My twins start first grade this year, they had just turned 4 after my diagnosis.

I think that you and I should think HS graduation okay? With all of the new medicine, and if you keep the crap at bay....you will be in the 25% that make it.

Prayers for you my friend. You gotta do a school scrapbook for each one!! =0)

Janis
Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/19/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 2/1/2005 AC + T (Taxol) Radiation Therapy 5/1/2005 Breast, Lymph nodes Targeted Therapy 6/1/2005 Herceptin (trastuzumab) Hormonal Therapy 1/1/2006 Femara (letrozole) Hormonal Therapy 6/2/2008 Aromasin (exemestane) Targeted Therapy 7/1/2008 Herceptin (trastuzumab) Hormonal Therapy 6/15/2013 Arimidex (anastrozole) Targeted Therapy 9/5/2015 Perjeta (pertuzumab)
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Aug 9, 2007 05:06AM shend wrote:

Hi,

My tumour marker from 36 in May jumped to 300+ many be 400+ now. My doctor switched me to Xeloda, this is my first chem drug. She is in Sloan Memorial Cancer center in NY city. I asked her how much time I have which I hate to ask. She told me we did not lose ground yet. I have two kids and still working. There are still other options for you. Hnag on there.

Shen
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Aug 9, 2007 06:33AM wallan wrote:

Hi there:

It just makes me so mad when doctors are so pessimistic to protect themselves. They just scare us.
I too know women who have beaten the odds. One lived 14 years after been told she would live a year. She died of something else. One has had bone mets for over 10 years now and still goes strong. Another has had lung mets for over 8 years now and is just on tamoxifen.
And my oncology nurse told me that no matter what your situation something can be done for you. That breast cancer is a chronic disease, not a death sentence.
On the other hand, my oncologist had me dead and buried I swear when I first went to her with stage 3 cancer. She is a real joy killer, I tell ya. And I don't have mets, but her attitude has affected my peace of mind because I am constantly waiting for the other foot to fall.
So doctors can be real downers. Yet, I now know that there is tons of hope and quality of life and that doctors are just protecting their own butts... it makes me so mad.

HUGS to you

Wendy A
Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 5/31/2004 AC + T (Taxol) Radiation Therapy 11/30/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/7/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 9, 2007 06:47AM Shepgirl wrote:

Deb, being a mother of young children- we need to be prepared for anything. Good Luck with the kindergarden, it a special time and the first time they get on that bus! while you will soon see. My daughter heads to 1st grade this year; but I will always remember that first day of her first year. All children (especially minors) need a plan and don't forget you fur-children too (they have even less rights); but that does not mean I'm going anywhere soon!


BTW- with that low tumor burden (your marker) and just bone mets..... I can't even believe he be worried. It is rare to die of BC with just bone mets. My understanding is death is caused by major organ failure (which is usually a complication of all the drugs or a secondary infection) or someting the medical community calls "overall tumor burden". All though, I have never found what and how they really measure this overall tumor burden thing?
Dx 12/23/2004, IDC, 2cm, Stage IV, Grade 2, 2/22 nodes, mets, ER+/PR-, HER2-
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Aug 9, 2007 07:20AM CTG wrote:

The drugs of today and the care we receive today have certainly prolonged Stage 4 lives beyond the so called statistics. We ARE living longer with a better quality of life. Just remember that.

CTG
dx fall05 stage4 liver and bone mets
dx fall06 brain mets / spring07 brain mets gone
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Aug 9, 2007 10:17AM sportycath wrote:

You've got a long way to go. Are you on a zometa infusion to strengthen your bones? It has kept my bone mets pretty stable for 2 1/2 yrs and my bc is very aggressive. I was diagnosed with multiple lungs and liver mets at the same time. I'm nearly reaching 1 yr with brain mets - so with lots of various treatments and a bit more luck with chemos than me you will see your Grandchildren walking into Kindy!!! cyberhugs Cathy xoxo
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Aug 9, 2007 07:35PM debman wrote:

I just typed a long long message as a reply and somehow lost it so...here it goes again.

First of all, you are all amazing women. Thank you so, so much for all this inspiration - it's exactly what I needed. It usually takes me a day or two after bad news to get my "fight" back but I got it.:)

I am really healthy with the exception of this little thing called breast cancer. Even the radiologist nurse today said to me - I have to tell you, you look really good and healthy. I told here I was except for bone mets.LOL

Shepgirl - I think the point he was making is - we have a lot of drugs that we can try but i can't guarantee you they are going to work. It's not in my organs yet but if they can't control it, it could be soon.

My tumor markers are really accurate for me. When I started in 2004, I was at 199 - last summer I was at 28 and last week 225 so I go up and down a lot depending on what we are doing. When I started with this doctor, he didn't do tumor markers claiming that they are not that reliable but after I got back from Dana Farber, they started running them at DF's request and thank goodness they have because a few times they've gone up while I was feeling OK and then of course, the tumor showed up shortly thereafter on a scan. I hope with all this research that they are doing that they can concentrate on what chemo might work with what person (and I think they are working on this) and also a better test to determine what the exact tumor load is and where.

I always decsribe fighting cancer like using a map to get to your destination. We all want to get to remission but sometimes there are so many routes to take (chemo, hormones, radiation, etc.), I think it's confusing to figure out what drug or treatment would get you to your goal the quickest. Does that make sense?? LOL It does in my head but it's late so anything is possible.

Anyways, thanks to ALL of you for doing this for me. You really lifted me up both yesterday and today and I really needed that.

Janis - it was so good to see you online. (waving hi)

Shen - I posted on your other thread but Xeloda worked wonders for me. I hope it does for you as well. If you have any questions about side effects, etc. PM me - I try to get on the boards but sometimes real life gets in the way. I was on it for almost three years and I've learned a lot of "tricks" on the way.

Thanks again everyone for just being there for me.
I really appreciate it.
Deb
Dx 5/27/2004, IDC, 2cm, Stage IV, Grade 2, 1/28 nodes, mets, ER+/PR-, HER2-
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Aug 11, 2007 01:17PM jacqniel wrote:

Sherri - what great story. Thanks for sharing!

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Aug 13, 2007 10:38AM debman wrote:

Great, great story Sherri-
Thanks for taking the time to post. I just LOVE hearing when people beat the odds.
Deb
Dx 5/27/2004, IDC, 2cm, Stage IV, Grade 2, 1/28 nodes, mets, ER+/PR-, HER2-
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Aug 13, 2007 12:42PM Member_of_the_Club wrote:

I know someone who has had bc mets for, i believe 19 years (one story is 19 and one is over 10 -- I haven't asked her point blank). She has never been NED either. What she did tell me is that she was in her 30s when her bc journey started and now she is about to turn 60. She has had progression but she looks great.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Aug 13, 2007 02:49PM jacqniel wrote:

Great story! Thanks for sharing! Jacque

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Aug 13, 2007 05:04PM WendyV wrote:

When I started my BC/mets journey I met a woman who worked in the same town as me. I actually walked from my place of work to hers to have lunch and chat. When she was in her early 30s she was diagnosed with BC, she had a lumpectomy and radiation. Nodes were negative so no chemo was recommended. At the time there was no testing for Her2. She went merrily on her way not giving cancer a second thought until 6 years later when she was getting ready to fly from PA to CA and asked her family doctor for some pain meds as she knew that with the pain she had in her back she would never be able to make the flight. (her onc had dismissed all of her back pain!) Her family doctor concerned about her history of BC ordered a bone scan just to be on the safe side. The bone scan revealed 2 sizable tumors on her spine. No biopsy was performed and she underwent chemotherapy. The chemotherapy resolved one of the tumors but the other which was causing debilitating pain did not shrink at all. Her oncologist told her there was nothing more that they could do for her and prepared to have her fitted for a wheelchair. She did her own research and found the MD anderson in Texas had a surgeon who was performing surgery on tumors once thought to be inoperatable. She had he tumor successfully removed 7 years ago, the tumor was tested and was found to be HER2+. After the surgery she was placed on Herceptin and has remained NED ever since!!!!! She actually recently made the decision to stop the Herceptin as she was having some side effects from the Herceptin and just wanted to gain her life back. She feels very comfortable with her decision and because she is also ER+ she does take Arimidex. She still has her port and has her tumor markers tested monthly just as a precaution. But NED for 7 years with a Her2+ cancer!!! I do believe that she is going to one of the ones that is truly cured! She is a daily source of inspiration for me. Can you imagine being told that you should just go home and die. Her oncologist actually asked her one day while she was trying to research other treatment options, if she was just going to keep going until someone told her what she wanted to hear? - can you imagine! So anyways, I hope this little story lifts your spirits! Miracles happen everyday and there is no reason why all of us can't be part of one!
Take Care!
Wendy
Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Aug 13, 2007 06:00PM LinTol wrote:

Thanks for sharing the encouraging stories Sherri and Wendy.

They do lift my spirits and put a smile on my face.
Linda
Linda Dx 5/2006, IDC, Stage IV, ER+/PR-, HER2-
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Aug 13, 2007 11:39PM katie11 wrote:

What wonderful stories and what a great thread - something we all need when we're feeling down!

Thanks for starting this, Deb and keep those stories coming!

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Aug 14, 2007 06:41AM jacqniel wrote:

Don't you love what you started, Deb? That was an awesome story, Wendy.

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Aug 17, 2007 01:59AM stiveusher wrote:

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Aug 17, 2007 02:15AM WendyV wrote:

moderator notified! this is getting ridiculous!

Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+

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