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NINASUZIE View Drop Down
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    Posted: Nov 26 2010 at 10:36pm

TEAM SUZIE-  tpic name change to keep track and help together easier

Today 11/25/10,my forearm was killing me and ended up at the  ER after CT scan..radius broke!  the ER doc found a tumor on the bone scan that had not been shared w/me.  I am heartbroken and called for my daughters to just be together this weekend.  I thank all of you, knowing that you know all that I feel right now.....one year since finishing tx and did all that was recommended....I am sooooo sad and heartbroken for my girls 25/32, single, but fiances....I am at peace for all I did and will do that is MY decision...so much to learn....so ready to be the Warrior cancer has taught me to be.  I do have metaplastic and do not wish to scare any with the same, nor any of us...group,tight hug   Hug

Then told also mets in both lungs on CT...want to biopsy 2cm periferial tumor.

Edited by NINASUZIE - Dec 01 2010 at 8:16pm
Suzie
**************
Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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Hug
I have you in my prayers and your family too.
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SagePatientAdvocates View Drop Down
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I am stunned by your news, Suzie...

I am so very, very sorry...

Please know that we are here for you..and always shall be..

I am sending you my contact info just in case...

my heart is with you,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Dear Suzie,

sent you a PM but your box is full...

in your corner,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Dear Suzie,

As a woman with widespread metastases, lung, lymph nodes, pelvic, etc., since March of this year, I know the feeling of having your heart in your throat and your stomach in your toes.  One thing I have learned from my quick study of metastases is that it is better to be in the bones than organs (not easy to appreciate when you do not want any of it anywhere - but that is what we are told).  The first thing you have to do is to get control of your pain.  You lose your clear-headed focus to get your treatment plan in order if you are in pain.  My kind and compassionate oncologist taught me this valuable lesson and she was absolutely correct.  You will be pleased to find that the bisphosphonates have a remarkable effect on the bone pain.  I am currently on clodronate (Clasteon) it is an oral bisphosphonate. They have injectables also that you may have.  The bisphosphonate circles the 'break' and strengthens the bone so it does not fracture again. The bisphosphonate is also thought to have anti-tumor properties also.   The bisphosphonate is also a great pain reliever, along with an anti-inflammatory you should be hopefully be comfortable.  Please ensure that your oncologist finds you an orthopedic surgeon that deals with pathological fractures (those caused by tumors) to have the past healing outcomes and alignment of your bones.  There are new treatment options in the field of radiology to deal with bone metastases and hopefully your radiation oncologist is aware of these.  If not, we will provide you what you need to share with your treating physicians.
 
It is a great shock I know, but we will help you through this next hurdle. 
 
Love,
 
Connie
 
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SagePatientAdvocates View Drop Down
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so wonderful to have you back, Connie..

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Thank you Steve,
 
No one knows better than I the therapeutic healing effect that comes from the loving, caring people of this forum with all the support they give in every form imaginable.  I believe I have seen a few yamulkas perched on the heads of the saints on the holy cards!
 
Love,
Connie
 
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Hi Suzie

I am sorry to hear about this news but glad you could share it with everyone on this site - we are here for you! I am so inspired by the support of Connie and others

Sending you healing thoughts

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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I'm sorry, Suzie.  You will be in my thoughts and prayers.

Hug  Sending hugs.
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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NINASUZIE View Drop Down
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crying/angry docs did no tests after tx for 1yr/shower lol/metaplastic???/is this stage IV criteria?/info good/pm box ready/should post on met forum....cookie baking, tree trimming/hugs today....so grateful for all of you....praying for you oh yeahHug
Suzie
**************
Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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Suzie,
 
Hugs and prayers coming your way from NJ!!!! 
 
XOXO
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Suzie,
 
I am so very, very sorry to hear about your arm and am totally shocked by your post.  I thank God that Connie is back with us and has been able to give you the wonderful advice she posted above.  I feel as though we are all suddenly being blind-sided by this freaking disease - I just want to scream "What the HEll is going on here"????  When one of us gets news we weren't expecting or ever hoping to hear again, it effects each and every one of us on this board - to the core  - as no one on the face of this earth, no matter how much we love them or they love us, can feel  or better understand the fear, depression and sadness that comes along with this news, than another that is walking on the same path, sharing the same hope that maybe this has been beaten down forever, and then to find it's reared its ugly head again.
 
Please know that you are in my thoughts and in my heart.  I wish for you all the best and that a treatment plan is started as soon as possible.
 
Linda


Edited by LRM216 - Nov 27 2010 at 10:56am
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Suzie,

I am shocked and saddened to hear your news.  I know you've been in pain for some time and was hoping it was not what you feared.   We are here for you and will help you out in anyway we can.  I've said this before, but I don't know what I would have done without my friends on this forum to help and hold me up every step of the way in fighting this horrible disease.  

Sending you a great big hug,

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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OMG.....it is more!!!!  Apparently my CT scan showed lung mets!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Suzie
**************
Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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Suzie,
I'm so sorry to hear about your arm.  sh*t, double sh*t, triple sh*t.    I hate cancer.  It is NOT supposed to start in a far extremity like a radius.   Well, Connie's advice is excellent.  If you have to have a met, bone is the place for it to be.  If you go to the website online community Inspire For Advanced Breast Cancer (google it), you will find that there are many many women who've been living with bone mets for years, and I mean LOTS of years.  15, 20, and so on.   So don't count yourself out yet.  This may well be a chronic condition to be dealt with (true with visceral mets too but even more so with bone mets)   As Connie says, the first thing they are likely to do is put you on a bisphosophate.  Zometa is the drug of choice for this in the US.   Beyond that, you'll have to see what the recommendation is.   And as Connie says don't be shy about treating your pain. 

We're here for you, as Donna says every step of the way. 

Much love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Suzie, I just saw your last post after I posted.  Sweetie, I'm so sorry.  Lung & bone.  Shocking.  Well, here we have lots of sisters traveling the same road with insight and courage.  We will help carry you through.
love you,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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NINASUZIE View Drop Down
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did you read that they did find lung mets......it's official that I have lost my mind!!!!!!!!!!!!!!!!!
Suzie
**************
Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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Suzie:
 
OMG - This is so hard to fathom - when did you find this out about lung mets? I am whirling, I can only imagine what you are feeling.  Is this all from your er visit? 
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Suzie,

I'm at a loss for words.  You are definitely shocked and overwhelmed right now.   Are you taking anything to help with the anxiety?  Do you have Ativan? 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Unbelievable.  I can't express how sorry I am to hear this.  Like Donna, I too am at a loss for words. 

Praying so hard for you, sweetie.  

Kim
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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