I want to run away

Dear Brenda,

I don't have any expertise with chemo .. just wanted to send a hug your way.  I know the scan results have been devastating for you .. and I am so sorry you find yourself here. 

I'm sure there are lots of gals that can help you with advice and support.

much love,

Bren

Brenda, I'm so sorry to hear about the mets to your bones.

I don't have multiple sites on my bone mets but a lot of women who do use AIs in combination with a bisphosphonate to strenghthen the bones. It's a relatively gentle tx for most.

If you post your questions on the Stage IV forum you'll find a lot of women who can answer you.

Best of luck.

Leah

Brenda, I'm so sorry you are having to go through this.

Two years ago I was complaining about my LE side AGAIN.  My complaint was the swelling in my armpit.  My onc decided she wanted to do a CT scan because I had nodes positive...just to check out things.  She added a bone scan after my blood work came back.  My calcium was slightly elevated.  She also checked my parathyroid for the elevated calcium.  Anyway, the CT scan and bone scan were done the same day and there was a lesion that looked like mets on L1.  I decided to have a biopsy and it indeed showed positive.  I have had five more places develope since then.  I was on Arimidex when the lesion was found.  Then changed to Aromasin.  Stayed stable for about six months.  Then found two more spots.  I was changed to Tamoxifen.  I had a CT scan that didn't pick up any lesions 3 months after being on Tamox.  However, I had something going on in my uterus.  Thus needed a MRI...can I say this is so much fun!!??   Anyway, I had a biopsy of the uterus and it is benign.  Then had a bone scan three months later.  Three more places showed up.  Now I'm on Faslodex and will be going on Xgeva when I complete my dental work.

Also, when they did the biopsy of the lesion on my spine it showed I was still estrogen positive, but less than when I was first dxd.  So, I think it's important for them to check your hormone status when they do the biopsy which may be a protocol.

I will be going back to Duke Nov. 29 to have a CT and bone scan.  I do not look forward to that.  I am the best at playing in DeNile Land.  I am so good at pretending that I have not posted on the Stage IV for advice.  I'm sure I will end up begging the ladies...LOL...for advice later.

I just want to try to encourage you to try to remain...well.....positive.  I don't know about organ mets, but I'm sure if it's only in the bones that you will take an AI along with a bisphosphonate.  There are many good treatments out there.  There are ladies on the Stage IV forum that are LIVING with mets.

When I found out about this new dx I told my friends to treat me the same...MEAN!  It was hard telling my children.  But I had to reassure them that there are treatments out there and that I would be around a long time. 

Also, do not hesitate to ask your doctor for something to calm your nerves if you haven't already.  It does take the edge off.

I wish I had some wise words to offer you.  You will be in my prayers.

{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}

Shirley

Brenda, I too had no lymph involvement but I did have veinal involvement.  I was going for my 5 year check when my bone mets were found and like you, wondered just where it was going to take me.  Here I am, 2 and 1/2 years down the road and I am NED just on AI's.  Take heart, all is not lost.

Love n hugs.  Chrissy

Awww, Brenda, you story makes me so very sad.  I "hear" the sadness in your post.

I was dxd in Dec. 2004 then dxd with mets Oct. 2009.  I am 65 years old.  I found the large lump in Charlotte when we went there for my (at the time) two year old granddaughters birthday.  I had a mammo in March of that year and all was clear.  I've had more than one ultrasound but it was always cysts.  I had dense breasts...now one dense breast. I had no reconstruction after the mastectomy.  Also, my path report said that I had "extranodal" extension which didn't sound too wonderful.

I so hear you about your grandchildren.  My granddaughter will be 9 this Dec. and my grandson is 6 1/2.  Of course we haven't talked to them about this.  They lost another step-grandmother to this disease about three years ago.  However, she was just like a grandmother without the "step."  She was a lovely lady who fought hard to live.

 When I had my biopsy on the L1 they gave me Versed (sp), Fentynal and something else.  But, Brenda, NOTHING knocks me out.  Even when I had my colonoscopy I was awake..watched the screen.  When I had my inserted port I was awake and when they took it out I was awake.  Most people go to "sleep" but I HAVE TO BE DIFFERENT.  I can tell you that for me the biopsy was not bad.  Of course the CT was used to know where to put the needle.  I was just happy that it was over with.

I think what scares us so much is the many women right here on this board that has been taken too soon.  I think back and think of the many sweet women who had children at home.  And no matter what "persuasion" (trying to put it lightly) that we lean we still have a sisterhood with all of the women on this board.  We care about each and everyone of them.

As far as dental work some of this may have come from chemo, but I have a very dry mouth due to some meds I take.  I am having a crown put on today and hope to get my first shot of Xgeva when I go back the 29th along with the Faslodex.  Those shots are given once a month.  I had to have the Faslodex injection every two weeks for three treatments then on to once a month which I lke much better.

I want to remind you that some women are even "dancing with NED."  Amazing!

Please let us know how your biopsy turns out.  You will be in my prayers.

Shirley

Awww Brenda...did not want to hear this...

know you have someone holding your hand...me

I know they have to biopsy to get path report again

many times the characteristics change, like ER and PR..

sending lots and lots of hugs,

SoCal

Brenda, I'm only a phone call away.

Brenda-hang in there, honey! We are here to help.

Brenda,



I am sorry for your diagnosis. I hope your biopsy went well,all things considered. there is a lot of support for you on your thread and they have experienced what you are going through. I can feel their warmth as they reach out to. I hope you hear some good news. My thoughts are with you.



Take care of you. Wishing you good health.

Hi Brenda ... I'm thinking about you today.  I know you get your results this coming Monday ... the waiting is the worst part of this.  Just know I'm always here for you.

love you much,

Bren

Good Morning Brenda,

So good to see a note from you  this morning!

Monday is just around the corner and the wait will be over.  I know you are dreading hearing those words.  It just breaks my heart that you have to go through this.  I wish no one ever had to hear those awful words.

Hopefully, some of the stress will go away when you get a treatment plan and can start killing off those cancer cells.

I'll see you in a week or two for lunch.

love you much,

Bren

Dear Brenda .. thinking of you this afternoon as you meet with your oncologist.  I know this will be a tough appointment for you and wanted to send you a big hug.

Can't wait to see you!

much love,

Bren