I want to run away

Naniam

Here I am wishing I could run away, bury my head but not very realistic.  I want all of this to be a dream and wake up and realize I had a nightmare - that isn't going to happen either.

Not sure where I really belong on BCO -  so I landed here for now.  I am having a bone biopsy on Monday. 

I am 6 years and 3 months out from my original breast cancer.  At my yearly oncology visit I mentioned I was having shortness of breath and a cough.  Chest xray was ordered and it suggested scarring or a pleural efffusion of my lung.  So a CT of my chest with contrast was ordered.  CT showed multiple areas in my thoracic spine, sternum, ribs, humeral heads.  So a CT of my abdomen and pelvis ordered.  Areas also in my pelvic bones and a small lesion on my liver that the oncologist is concerned about.  They have compared these to prior exams.  CT of my pelvis was fine 2 years ago. 

Oncologist said he felt we are dealing with mets; radiologist said these areas in his report are consistent with metastatic disease. 

So, I'm hoping since I can't really post in the mets thread one of those gals that has had multiple bone mets will see this and tell me if it is likely I will be taking IV chemo or just an AI.  I feel with so many areas to expect IV chemo.  What IV chemo is used most in this case.

I know it could change - I am in a strange new world and trying to wrap my head around all of this.

Like everyone before me, I would like to run away; wake up and it be a bad dream. 

I guess this is the place I am to post until we have the biopsy results. Hoping someone stops by and has some input.

Brenda 

Bren-2007

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

suzieq60

Brenda - there are lots of treatments they use for bone mets - it will probably depend on the pathology. There are lots of ladies in the Stage IV forum who have been around for years with bone mets so take heart from that. So sorry you are going through this. It just breaks my heart.

(((((((((((((((((((((HUGS))))))))))))))))))))))

Sue

Leah_S

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

Enjoyful

Brenda, I'm so sorry that you're facing possible mets!  What a punch in the gut.

I don't have any personal experience with extensive bone mets, but I know of some women who had great results with bisphosphonates (Zometa is the most popular, I believe).  Speak with your onc about excising the liver spot.  I believe the treatment protocol for a single liver met is headed toward surgery.

All the best to you, Brenda.  Please keep us posted!

Hugs,

E

Anonymous

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

Naniam

Thank you everyone.  RIght now hard to know where to post but thank you for responding.

Shirley, it is just a formality to have the bone biopsy.  The oncologist says he feels it is cancer, the radiologist says it is consistent with mets.   I wasn't sure with mets in so many areas and multiple lesions in these areas that it would be an AI and Zometa.  I was scared it would be IV chemo again.  I have read on the mets thread - didn't feel I could post there yet because of the biopsy - and that seems to be the treatment.  I don't know that a lesion in my liver would change anything.  That was the one thing I was praying for - not to be in a vital organ.  Not even sure how much difference that makes .  I was highly ER/PR positive - something like 96%.  I have no ovaries.  I know each oncologist is different in how they test and which drugs they prefer.

I had no symptoms - they don't understand that but I was having quite severe issues in my lumbar spine that was from severe degenerative disease with buldging disc, etc. and having a procedure called radio wave nerve obliteration there and until I could get it done was taking Vicodin.  I'm sure that covered some things.  Now that I have not been using the Vicodin the only pain that I have had has been in my right side; below my ribs. 

Talk about a shock !  I have some Ativan and I had to up the dosage so I could sleep at night.  I cried some but it scared my young granddaughters to see me cry so I stuffed it down deep and have tried to move forward.  

I'm really not sure where they are going to biopsy - I know the oncologist told me they were doing the CT of the abdomen and pelvis to see if there was an area to biopsy that would be more comfortable for me.  From what he then said about the pelvic bones, I believe it will be from that area.   I hope they give some sedation; they have me NPO and the biopsy is at 1 pm.

My pelvis and liver were fine 2 years ago. 

Shirley, I never had any lymph node involvement.  I had the original path report from the local hospital and then a 2nd opinion at Baptist - one of them said there was blood vessels involved in the tumor and one said there wasn't.  So I think blood vessel involvement in the tumor is just as important as lymph node involvement.    At least in my case that seems to be true. 

I just want the biopsy over and know the treatment plan.  I know there is good results with bone mets these days.  I'm 66 and my youngest granddaughter is almost 4; her sister is 6.  I am not sure that I will get to be that old lady dancing at their weddings but I'm sure gonna try.  I know each of us is different in how we respond.

Thank you for taking the time to talk to me.  Are you having dental problems from your treatment?  I sure hope not.   

So your scans are after Thanksgiving and we'll pray that all is stable.  Hugs to you too, Shirley.

I really appreciate your help.  Sorry that I am here though. 

Brenda 

chrissyb

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

Naniam

Thank you - just takes your breath away and it scares you so much.  I truly appreciate everyone taking the time to offer encouagement and to talk about the treatment.

Anonymous

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

Bren-2007

Brenda ... I'm thinking about you today.  I'm so glad you've received so many responses to your questions.  I know you're nervous about the upcoming biopsy .. and I'll be so glad when it's over and you can get a treatment plan.  I'm keeping you close in my thoughts.

much love,

Bren

PS .. Hi Shirley .. it's good to 'see' you!

SoCalLisa

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

livesstrong

I am here also Bren, holding your hand the entire way my friend.

bluedahlia

Brenda, I'm only a phone call away.

Naniam

RN daughter got the report on my CT scans of abdomen and pelvis.  Nothing we didn't know - multiple focal lesions of the pelvic bones and an area in my liver.  Biopsy is Monday, 14th.  Appointment with my oncologist on the 21st for biopsy results and plan of action. 

Thanks everyone - thank you for your encouragement and for just being here. 

Patience Lord, give me patience.   

Iwillwinthisbattle

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

Alpal

Brenda - I wish I had seen this earlier. Actually, since I saw it, I've replied twice. Both have gone poof! Just wanted you to know that I was diagnosed in 2008 (age 60) with multiple bone mets. 17, I think. I'm still here 31/2 years later. I did chemo first and then tried Arimidex and Faslodex. Have been on various chemos since, was on Xeloda for a year. My QOL is good and none of the chemos were as bad as I expected. Except for my left shoulder, I've had no pain and onc and I use it (shoulder) as my own personal progression indicator. 3 of my original mets keep popping back up, but no new spots.

I know you''re probably in a state of shock. As everyone has said, things will improve once you have a treatment plan. You'll find so much help and support on the Stage IV Forum.  Sounds like you already have many wonderful friends on these boards and you'll be making more.

Naniam

Apal, thank you.  Guess it will be Monday the 21st until I know the results of the bone biopsy and the treatment plan.  

Thank you for the encouragement - quite a shock when you thought all was well in your little corner of the world. 

Anonymous

Brenda, I just wanted to let you know I'm thinking about you.  I hope the biopsy went well (not painful).

Sending you hugs,

Shirley

dragonfly55

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.

Bren-2007

Hi Brenda,

Thinking of you and hoping you are resting after your biopsy yesterday.

much love,

Bren

Naniam

Did both punch biopsies and a bone marrow aspiration.  Pathology was present and as they got the bone samples, they made the slides and were pleased.  Think they got 9 specimens.  A bit sore but loved the drugs they give to make you comfortable.  

Will find out results and plan of action on Monday.  Still think it will be Zometa and an AI - even though my lesions are blastic not lytic. 

Thank all of you so much for the encouragment and support. 

chrissyb

Nan, so glad to hear that you are done ad now just waiting for results.  Good to hear that you were comfortable throughout.

Love n hugs.  Chrissy

Bren-2007

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

Bren-2007

Hi Brenda ... checking in on you to see how you're feeling.  Hope you're holding up okay with the wait for Monday.

love and hugs,

Bren

Naniam

Sometimes I feel that Monday can't get here fast enough and then I wish I could just not have to deal with it at all.

Monday, will just be biopsy results and the plan of action.  I know intellectually I am Stage IV - being in the room with my family and hearing the oncologist tell me "officially" is still not going to be easy.  

I can't run from the "consistent with metastatic disease" or the oncologist telling me that he has seen the scan and he feels we are dealing with cancer - so trying hard to handle the wait and prepare to know I have to be on some form of treatment once again. 

No different than others here - I just know the all wanted to run away too.  I still do.   

Thanks for being here - love you my friend

bluedahlia

Love you too Brenda!

Bren-2007

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

Naniam

Bren, Can't wait to meet with you and just give you a big hug.  Thanks for being so supportive.

Cathy,  love you too.  I am thankful for both of you gals.

Bren-2007

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