Bone Mets

dawn · 12-02-2009, 06:07 PM

I've just been dx with small lesion on breast bone approx 2-3 cm. Im terrified. I was switched from femara to aromasin and begin monthly infusions of aredia tomorrow. I know there's people out there with a lot more serious issues that I have. But it seems that this recurrence is so much harder to take than the original dx.My children were 4 and 1 when I was originally dx now they are 8 and 5 and the joy of my life. The anxiety is crippling that I won't get to see them grow up. Is there anyone that has been dx with bone mets and can still be around for their kids lives.

Finding it very hard to deal.

Dawn

tricia keegan · 12-02-2009, 06:35 PM

Dawn I don't have this but know there are many here who do that can help you.
I just wanted to say sorry for your dx ...xx

suzan w · 12-02-2009, 06:53 PM

I am sorry to hear about this Dawn, I don't have anything to say to help, except to offer support!! How did you find this lesion???

dawn · 12-02-2009, 07:34 PM

It was found accidentally with a routine bone scan. Otherwise I may never have known about it until it was much larger and I found pain

Faith in Him · 12-02-2009, 09:04 PM

Dawn,

I know of several women who are doing well with bone mets. You are triple postive so there are alot of treatments for you.

I am sure someone with bone mets will be along soon to advise you.

Stay strong,
Tonya

Adriana Mangus · 12-02-2009, 09:19 PM

Yes, Elizabeth Edwards. Not only is she dealing with bone mets, she's also dealing with her husband's former U.S. Presidential candidate; John Edwards, affair.

Apparantely he's had a child with a mistress. Now, that's hard to take.

Now my story...

I was diagnosed with bc in 1994, had a recurrence in 2003. I stopped chemo this week due to progression on rt lung.

I'm looking into Cyberknife which my insurance company won't pay for it. The I.C. in reference does not cover it for anyone in Southern/Northern California.

My brother-in-law received 6 cyberknife sessions for a lession(s) on his spine, he was in a lot of pain. He's now doing great, still on chemo though but the cyberknife took care of these lessions.

Please keep up us informed of your treatment. You will do just fine.

Love,

Adriana

Jackie07 · 12-02-2009, 10:31 PM

Dawn,

Here's a link to the thread started in September by Char about bone mets. Thought I would list it here in case some members missed reading your thread.

http://her2support.org/vbulletin/sho...ight=bone+mets

Positive thinking increases the release of endorphin in our brain, which then improves our immune system that aide in the eradication of cancer cells. I hope you will come to the board often and get both information and encouragement. 'Knowlege is power', many have survived this dreadful disease. [See the 'long-time survivor' thread.]

Looks like you've got a strong support system at home. There's a 'care giver' corner your 'other half' might want to explore.

Being honest to our feelings is one big factor to our survival. It releases some stress - and takes a lot of courage to do it - when one is able to say: "I'm terrified." And you've said it right there!

Welcome, veteran warrior! Together, we can make it!

schoolteacher · 12-03-2009, 06:03 AM

Dawn,

Let us know how the treatment goes. You will be in my thoughts.

Amelia

Pam P · 12-03-2009, 06:25 AM

Dawn -

I read your post with lots of empathy remembering what that news felt like to me. I also had a routine bone scan and a 'suspicious' spot showed up on a rib. Three months later the spot was a confirmed bone met. That was in 2002. I've been dealing with bone mets ever since. The good news is I'M STILL HERE! and I'm feeling well (other than the fatigue & ups and downs from chemo side effects), and even though the bone mets have gone from 1 identified spot to more extensive areas the cancer has not spread beyond the bones. The bad news is for me the hormonal inhibitors didn't do much for me (tamoxifen, femara, faslodex)they only worked short term, and so I've been on a lot of chemo to keep stable. But whatever it takes I'll do. For me even keeping stable nothing yet has been able to put me into NED, but you could very well have that happen to you - aromasin & aredia or another combo could be your ticket to NED. I hope that for you. I'm older than you, my 2 boys were young adults in their 20's when I was dx in 2001. I remember then wanting to live to see grandkids..... now I'm enjoying 2 beautiful little ones and praying I'll be here for many many years to see them grow into their 20's.

dawn · 12-03-2009, 10:35 AM

Oh Pam,

Thank you so much. Im was just switched to aromasin and just had my first aredia infusion today. Im trying to keep it up for my kids, especially since they are so into decorating for the holiday season. My I just cant shake this sad feeling. Any suggestions!!With the initial dx I just said Im going to beat it, and I have moments like that now, but it's just very hard. But you give me so much hope, That maybe, just maybe I'll do it!!!. Thank you.

Pam, or anyone else, is it possible that hormone inhibiters themselves could just keep this under control?

DAwn

Becky · 12-03-2009, 11:12 AM

Dear Dawn

I am very sorry that this has happened to you. It is very possible that a Herceptin/Aromosin (or other type antihormonal)/Aredia (or other bone hardener) can kick this through the door.

There was a study on Her2+/ER+ women with metastatic disease (don't know where the mets were) and Herceptin/Arimidex was tested vs Arimidex alone and the dual receptor combo was a winning one.

http://www.bio-medicine.org/medicine...dings-14685-1/

Aromosin could be substituted for Arimidex and I am sure you would get the same results.

This is not the most ideal situation but I am assuring you that this is a very doable, liveable and very long term situation. I know you will be able to handle this for many, many decades!

I will be thinking about you and your family.

dawn · 12-03-2009, 11:55 AM

You know something, I joined this group when I was first diagnosed and it brought me so much hope and light. After the first couple of years I came back to read but didn't comment. Now with this new battle, I find myself here again and once more finding the light, love and hope that got me through the first round. Becky, You have just made my otherwise nerve racked day a brighter one, filled with the hope I need to pull out of this slump and decorate our home with my children with a smile on my face and my concentration on them. Thank you.

With everything that is out there, this is the one place I can come for comfort, hope and healing.

Joan M · 12-03-2009, 12:58 PM

Dawn,

Sorry to hear about your bone mets, but since you are triple positive, there are a lot of options. Also, going several years without a recurrence really works in your favor.

I don't have bone mets but I've heard that either surgery or radiofrequency ablation (which is radio waves, not radiation) is an option for the breast bone. Your onc should be able to give you more specific feedback on this.

Also, great photo. You look wonderful.

Best,

Joan

dawn · 12-03-2009, 03:09 PM

Thank you so much Joan. Im going to mention some of the things I've learned here to my onocologist. I love this pic of Pete and myself. The love of my life. I didn't meet him until I was 32 and we didnt start having kids until I was 36. It was meant to be. He has been my rock, along with my kids and has always made me feel like there is no one more beautiful, even on my worst days. Im sure I was given him to help me through these tough times times in my life. Along with all the women on this site. Im starting to think Im one of the lucky ones.

Dawn

Pam P · 12-03-2009, 04:08 PM

Yes, Dawn, like Becky said, the hormonal inhibitor drugs can on their own put you back into remission - and if aromasin isn't the best for you there are others. Will you be doing herceptin too? I would push to get started on that too right away. I know how hard this news is, how scary, and how easy it is to get overcome by worry. But, breathe, breathe, hugs those beautiful kids, you have years and years to live and enjoy life and a whole arsenal of drugs to knock back those bone mets if needed.

dawn · 12-03-2009, 04:26 PM

Thank you so much Pam. I did Herceptin my first time around. Can I do it again with the Aredia? My kids are what keeps me going, especially when they start to squabble and I need to stop it, I forget everything else and deal with them. Gosh, they are wonderful.

I think I have to call my Onc. with my newest list of questions. But he is also wonderful. Last week alone after getting my report he called me 3 days in a row to make sure that I was okay. Then Monday past my mom had an appt next door to his office. So I went in to see him. He held up to appts to see me and try to make me feel a better about things.

As I talk to you girls, Im slowing starting to realize how very lucky I am. My family, doctors, this site, my kids. Thank you so very much.

Dawn

Becky · 12-03-2009, 06:01 PM

Fight to have the Herceptin added to your arsenal of weapons. It can be added to the Aredia and Aromosin.

Use your new Stage 4 card big time!

dawn · 12-03-2009, 06:19 PM

Thank you Becky. Im going to call my Onc in the morning.

lizm100 · 12-03-2009, 07:56 PM

Dawn-

I have heard and read heard that you can go on for decades with bone mets since the bone is not a vital organ. Use all your guns and ammo to fight this beast, live each day to the fullest, and most importantly enjoy your children and let them be your strength. Don't let cancer rob you of living life to the fullest.

Sending (((hugs))) your way,
Liz

ElaineM · 12-03-2009, 08:55 PM

I am sorry to read about your diagnosis. However, please do not give up all hope. There are several options available. Some people on this board have lived for many years with bone and other mets.
Take care and enjoy the holidays.