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Renae View Drop Down
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    Posted: Jan 13 2013 at 2:29am
Sorry to ask again but I don't know if I posted correctly today. Anyone with bone mets? Hugs and scared, Renae
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krisa View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2013 at 4:31am
Renae, i know there are members who have posted on this forum who have bone mets. We never know who reads the new posts but we can hope someone with bone mets will read and answer your post.
Take care.
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Kazzie61 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazzie61 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2013 at 4:53am
Hi Renea......I have bone mets, was diagnosed in May 2012. 
I have it in my spine, ribs, pelvis, sternum, right arm& leg - don't know the medical terms for the last two!!
Currently having Gemzar/Paclitaxel, have had 2 cycles, start 3rd cycle on Thursday & then get scanned.
When were you diagnosed? I am guessing recently.....
I have replied to your PM & please feel free to ask any questions.
So sorry to hear of your diagnosis & fully understand how scared you are (((hugs)))
I was & still am very scared, but once you have a treatment plan it seems to be a bit easier to cope.
It still sucks though & is hard to come to terms with xxxx
I hope you have good support, I have a wonderfully supportive family & friends & I am going to start seeing a psychologist this week. I also see my GP regularly for a chat....she too is wonderful & supportive.
Once again, sorry to hear of your news & luv n hugs......thinking of you.

Karen xxx
DX TNBC 5/10/10 DCIS & IDC, multifocal
Lumpectomy, TC Chemo x 6, BMX
with immediate DIEP Recon
Dx bone mets may 2012
Radiation June 2012
4 weekly Xgeva
Chemo Paclitaxel/ Gemzar December 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickid Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2013 at 10:51am
Hi Renae...
Bone mets were found in my spine in December 2010 and I was put on Xeloda 3,000mg per day (2 weeks on 1 week off). I was blessed that, with my next pet scan, the evidence of mets had gone and nothing else since then...still on Xeloda and it's working for me still.
It IS scary and I regret your having to go through this....thinking of you and sending prayers,
Vicki
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazzie61 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2013 at 5:53am
Hi Vicki....just a quick & probably silly & vain question...
I have been on Paclitaxel/Gemzar for 6 weeks & getting scans at the end of this cycle.
If it isn't doing the job he is talking about switching me to Xeloda.
My question is, does Xeloda cause hair loss??
I've lost my hair already & can't help feeling if I have to stop this treatment to go on one that doesn't cause hair loss I'm gonna feel a bit, well, pissed!! Like it was all for nothing....a risk we all have to take I guess....


Karen x


Edited by Kazzie61 - Jan 17 2013 at 5:56am
DX TNBC 5/10/10 DCIS & IDC, multifocal
Lumpectomy, TC Chemo x 6, BMX
with immediate DIEP Recon
Dx bone mets may 2012
Radiation June 2012
4 weekly Xgeva
Chemo Paclitaxel/ Gemzar December 2012
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2013 at 7:08pm
Xeloda doesn't cause hair loss, just some thinning and slowed growth.  The good news is that your hair will grow back while you are on it, so there's still some benefit in this regard though of course it would have been nice to reverse the order.  Sorry about the hair.  I know how hard it is.
Hugs,
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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Kazzie61 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazzie61 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2013 at 8:24am
Thanks Denice.....hopefully the current treatment is working & I don't need to change yet!!!
Even though hair would be lovely.....:)

Karen xx
DX TNBC 5/10/10 DCIS & IDC, multifocal
Lumpectomy, TC Chemo x 6, BMX
with immediate DIEP Recon
Dx bone mets may 2012
Radiation June 2012
4 weekly Xgeva
Chemo Paclitaxel/ Gemzar December 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote frankp Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2013 at 11:13am
Women with bone metastases might consider obtaining a serum HER2 test. I'm assuming women posting here are considered triple negative, but maybe 10% or more have HER2 metastatses. And an elevated serum value could lead to re-evaluation and use of effective HER2-targeted drugs. I've no idea about availability in Australia, but here, you might look at www.labtestonline.org for a little more information and www.hertestonline.com, where you can actually purchase the test via direct-to-patient e-commerce.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2013 at 8:37am
Renae,

Were you diagnosed with Bone Mets or having symptoms?

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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Renae View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Renae Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2013 at 1:36pm
I have bone mets, do you remember me? My dx was Nov 1st, it was a total shock! Renae
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2013 at 12:42pm
Renae,

Sending caring and good thoughts....... across land and water.


Grateful for today.......Judy
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Renae View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Renae Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2013 at 12:50pm
Thank you Judy. I am in Dubai right now, very different. I still feel lost and sad with my cancer. I appreciate you thinking about me.
Renae
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2013 at 12:27am
Renae,

Glad I sent the thoughts......."across land and water."
Initially, was going to send the thoughts....."across land and water to Australia"
.....in which case, it might have taken a little longer to get to you!

Am beginning to think that "travel therapy" is part of routine breast cancer care in Australia.
Kazzie/Karen had posted she had a trip to " Amsterdam, Milan, the Lakes in italy, Forence, Rome,
Venice, Malta & a cruise in the River Po in Italy".
Remembering (actually just checked Kazzie's thread) you were in Chicago June 2.
And now, you are in Dubai.

Thinking/hoping that we who read the forums (whether posting or not) eventually feel part of the
TNBC family......feel somehow connected - united - strengthened - supported -
and at times, saddened.



With caring and good thoughts with love and gentle hugs,
Grateful for today..............Judy
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Renae View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Renae Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2013 at 10:01pm
Thank you Judy. I am back in Melboring, no just kidding. Just wish Europe and the States were closer to me. Wher do you live? Renae xx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2013 at 12:53am
Renae,

Yes, agree completely.   Wishing Europe and the States.......and Austalia were closer.
I am in the USA.


With caring and positive thoughts,
Grateful for today..............Judy
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