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 Stage iv?? This thread is for you!
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Tricia Keegan

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Stage iv?? This thread is for you! - Tuesday, January 29, 2013 5:49 PM
Please feel free to post here if you need advice, support or simply a listening ear!! We're here for you!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
michelecuddy@gmail.com

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Re:Stage iv?? This thread is for you! - Tuesday, February 26, 2013 6:08 AM
So sad to not see anyone on this forum. I've always been a Komen supporter but now that I'm diagnosed stage IV there seems to be little to no support here. Please if you are out there lets get to know one another and help support each other.  
2008 dx DCIS  bilateral masectomy
2012 dx Stage IV Bone Mets  currently on AC and Zometa
Tricia Keegan

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Re:Stage iv?? This thread is for you! - Tuesday, February 26, 2013 9:25 AM
Hi Michele and I agree its a shame this forum is not used more, especially as it used to be so busy and sadly I know we do have quite a few ladies dealing with mets out there and I hope they post more often to get things going here......p.s I notice your user name is the same, did you contact komen admin as per my pm?? if you had no luck let me know and I'll e mail them on your behalf!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
Sis52

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Re:Stage iv?? This thread is for you! - Saturday, March 02, 2013 1:44 PM
New to message boards so not sure if I'm doing this correctly.
I'm writing on behalf of my sister who has bc recurrence with mets to bone.
Most recently she's been on a course of Xeloda but blood tests this week show an elevation in markers (which have always been reliable indicators in her case)
I need advice on what the next course of action/options might be so she can discuss with her onc next week.  She does not currently take Zometa, as I notice many do.
Sorry to be sketchy with details but I'm not sure what other information is needed.
I feel like we got a little complacent and were ignoring the ugly C beast and now he's rearing his head demanding attention again.
Tricia Keegan

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Re:Stage iv?? This thread is for you! - Saturday, March 02, 2013 2:54 PM
Hi Sis, I'm assuming your sister is triple negative or she would have been taking some hormone therapy or/and Herceptin along with the Xeloda, I think as the markers have been correct for her in the past I'd ask for a scan to be certain there's no progression elsewhere going on. If she's in pain rads can be very beneficial for bone mets and I'd definatly ask to be started on Zometa or similar asap. If she's unsure she's getting the correct treatment a second opinion can always help and certainly won't hurt, I'm sorry she's had this recurrance but it can tend to rear its ugly head when we least expect it, please keep us posted and my best wishes to your sister.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
Sis52

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Re:Stage iv?? This thread is for you! - Sunday, March 03, 2013 9:14 AM
Thanks Tricia, for your comment and advice.
No, I don't think she's triple neg.  She is ER+ and PR- if that helps. She was on Aromatase Inhibitors (Femara, I think) before the chemo Xeloda. 
First DX was over 10 years ago.  Recurrence diagnosed over 2 years ago.

She doesn't seem to have significant bone pain and I believe a PET is scheduled. 
She is very apprehensive about the jaw necrosis potential with Zometa.  Are there early indicators so one could suspend the medication if trouble is looming?  Or is the necrosis sudden and without recourse?

I would happily accompany her to MD Anderson but she has faith in her onc.
And she's has been to Mayo in Rochester as well as a Cancer Center of America years ago with the first DX.  I don't think they gave any significantly different picture or suggestions than her current doc.


I was just wanting to understand what others thought the "typical" course of action (knowing there is probably no such thing) would be next.  Back to an AI?, another chemo drug?, if so, which one is commonly tried?, etc. so she could have some informed questions for her onc.

Thanks again,
Laura
Tricia Keegan

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Re:Stage iv?? This thread is for you! - Sunday, March 03, 2013 2:22 PM
Hi Laura, If Femara failed her I'm surprised her Onc didn't suggest Faslodex which is often used to treat mets as a hormone therapy and can be very succesful for some people. I take zometa myself once a year only due to osteopenia from the A1 but know the risk of osteonecrosis is very very small, I advised my Dentist who took lots of precautions with me before having any dental work done and I think the benefits to bones far outweigh the small risk involved, sorry I don't know much more about the onset of jaw necrosis other than what I've said here but I'm glad to know she's not in pain. There are many other chemo drugs for her to try should she go that route but anyone else I know with bone mets have been treated with hormone therapy and zometa and only had chemo when this may have failed and some progression occoured, Gemzar and Navelbine or one of the taxane drugs are often used to treat bone mets too, my best wishes to her and please keep us posted!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
suz777

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Re:Stage iv?? This thread is for you! - Wednesday, March 13, 2013 5:30 PM
I'm not on here a lot anymore, but have taken Faslodex for almost 3 years now....really did the trick for me after Femara failed with my first bone mets. I had more mets the 2nd time and Faslodex is my maintenance drug now, along with monthly zometa infusions.
ElaineQW

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Re:Stage iv?? This thread is for you! - Wednesday, March 13, 2013 5:39 PM
Suz  - Happy to see you on here even for a moment and glad that you're doing well!

Hug
Elaine

 A person's greatness is the power to stand alone;to be able to make her own choice; in action,to write anew her own law; to choose her own sacrifices; run her own dangers; win her own freedom; venture her own destruction; to choose her own happiness 
 





PeachRose

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Re:Stage iv?? This thread is for you! - Monday, March 25, 2013 3:11 AM
Hello,
I just signed up for this service as I am feeling a bit overwhelmed right now.  I was diagnosed at Stage 4 back in 2007 and have been coasting along with Zometa and Arimidex up until last August (2012).  Then the bone mets started growing again, and were joined by a liver met and most recently mets in the pleural cavity of the lungs.  I just got that last news on Thursday.  Needless to say I am getting quite scared.  I guess I was getting too far ahead with my life and not paying enough attention to the fact that I am most likely going to die from this stupid disease sometime in the next few years.  Any ideas of what comes after failure of ARimidex, Affinitor and Xeloda?
 
 
 
Nancy aka PeachRose
Stage 4 with bone, liver and lung mets
CarePage: MyLifeasProfessionalPatient 
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