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
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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
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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 

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Monday, March 25, 2013 11:15 AM
Hi and I replied more on your other post on the introduce yourself forum, there are many drugs to choose from and its usually a matter of what your Onc feels is right, even if and when you exhaust all the chemo drugs there are still clinical trials to consider so do take heart. My friend did well on Navelbine and Faslodex as a hormone therapy but there's no set list to choose and there are many others including the Taxanes.
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

georgia 2
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Re:Stage iv?? This thread is for you! - Tuesday, March 26, 2013 2:42 PM
My original diagnosis was stage 2 breast cancer in 1996. I had a mastectomy and five years of Tamoxifen. The first recurrence was to the left hip joint....the end of the femur broke off and I had a hip replacement in 2005. I took Arimidex for three years and Zometa shots to strengthen my bones. In 2008 I was diagnosed with uterine cancer and had a complete hysterectomy. (one of the possible listed side effects of Tamoxifen). I was also treated with a course of chemo (Taxotere and Carboplatin). Arimidex was discontinued. Zometa was stopped because it was damaging my kidney function....I now get a monthly shot of X-Geva to strengthen my bones. I took Zeloda for a while but did not respond to that drug. I took Faslodex shots for about a year but discontinued that when I began to get numerous mets to the spine, femurs, adrenal glands and liver. For the new mets I took a course of AC (Red Devil) Chemo from Nov. 2011 til May 2012. In July 2012 My PET scan showed all previous spots inactive except one in the liver and my breast cancer marker was down to 32. So, I had a good summer 2012. 

In Oct. 2012 a routine PET scan showed numerous active mets to the spine again, progression of the cancer in the liver and my breast cancer marker was over 200....the highest it has ever been. They started me on two drugs by pill (Aromasin and Afinator, both estrogen blockers). The Aromasin is not bad to take but the Afinator has a whole page of possible side effects and I have had many of them.  ( pain and tenderness with cramping in the stomach and lower gut, nausea and vomiting, dry peeling skin, dry mouth and eyes, rashes and sores, pain in the muscles, bones, and joints). They took me off Afinator for a week and started me back on it every other day instead of daily. That worked for a while but about two weeks ago all the side effects came roaring back and I was very sick and in pain. I stopped the Afinator again and now two weeks later I am feeling good again. My next appointment is in early April and I think we may try it again at a lower dose. 

THE GOOD NEWS IS.....the cancer is responding to these two drugs. A PET scan in Jan. showed all bone mets inactive, adrenal glands were clear, and liver spots greatly diminished. My breast tumor marker is now down from over 200 in Oct. to 61 in early March.


Living with and managing stage 4 cancer is not easy, but for me it has been worth it. I have seen two grandchildren grow up over these years (17 yrs. since first diagnosis) and two more born (age 7 and 10). I pray nightly for all of us living with this disease, for new and better treatments, and most of all for a cure!


Brenda


Tricia Keegan
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Re:Stage iv?? This thread is for you! - Tuesday, March 26, 2013 3:52 PM
Brenda its wonderful you'be had such a good response to these drugs despite the awful side effects you've had and thanks for such an inspiring post.
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

mary jo
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Re:Stage iv?? This thread is for you! - Tuesday, April 02, 2013 11:42 PM
Hi all, Firstly (?word)Tricia are you a health-care provider? 'cause your answers I've seen are really good, knowledgeable and comprehensive, thank you for moderating! @PeachRose there are many more options out there, do NOT lose faith! So good to hear you have had successful treatment since 2007 :) I was diagnosed 1/2012 with stage IV recurrence with liver/lung mets after treatment(mastectomy, chemo, radiation, oophorectomy eventually) for stage IIB in 2000; Taxol/Herceptin quickly wiped out the lung met, eventually the liver mets also; see what your HCP says about the taxanes (Taxol/abraxane) and radiation for your mets...and there's more drugs to use after that, big arsenal at our disposal! My big concern now arw the dang finances of this whole mess, now that we're not going to collect on the life insurance anytime soon! my insurance has some big gaps, any suggestions for people who make too much to qualify for assistance but not enough to pay for college tution, HCP co-pays, PET scans, etc? Thanks for any suggestions!

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Wednesday, April 03, 2013 2:48 AM
Hi Mary Jo and thanks for saying so but no I'm not in the medical field at all, couldn't be further from it as I used to be retail furniture manager and kitchen designer!:) I've had a lot of friends who recurred as stage iv and its a sad fact that this disease does educate you fairly quickly!! I'm sorry for your own dx whioch must have been really hard after tweleve years but I'm pleased to know despite all that you're doing well and had a good response to treatment. I'm sorry I can't help with your financial question and know cancer is not a cheap disease and its a sad fact so many of us end up with money issue's, I believe the Livestrong organization can be a wealth of knowledge in this regard so try googling them for a contact number, there's also a financial forum here where you may see some tips to help you, I think www.breastcancer.org has a very busy stage iv forum where you may find there are more people to advise you but I hope you keep us posted on how you're doing.
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

dmp101685
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Re:Stage iv?? This thread is for you! - Wednesday, April 10, 2013 9:47 PM
Hi Everyone, My mother was just diagnosed with bone mets in her spine, ribs and she thinks a few other bones. She has yet to have her follow-up appointment after her bone scan and CT scan, so that's why she doesn't know, as her Dr didn't think it was necessary to see her before her next scheduled dose of Zometa. A little background, she was first diagnosed in 2005 with stage II ER+ cancer, had a lumpectomy with clean margins, 4 weeks of chemotherapy (I wish I could remember the course) and 6 weeks of radiation. She then missed a few months, maybe a year, of tamoxifen because she developed really severe blood clots that required medical attention to her heart. She then resumed her post cancer therapies and came of of those in July 2012. She started feeling some extreme back and chest pain in January 2013, and after my incessant nagging went to a different hospital (I'm very uncomfortable with her PCP) and had a CT scan showing bone mets. The next day she was back to her oncologist and started the hormone therapy with her first Zometa dose a week later with furth CT and bone scans. She was also started on and narcotic regimen with ibuprofen supplementing. My major concern is there any thing that others have found to help the pain. She is an amazing person and still trying to work full time through this new diagnosis, but I can see she's in pain. Not only from the narcotics, but I think also from the constipation (she's on Senna, Miralax, MOM and anything else I can think of like fiber and prunes). I feel so helpless thought that other survivors might be able to let me know what other therapies (heat, cold, arnica cream) may have been beneficial to you. Background about me is that I am an RN who went into the field after her first diagnosis. I firmly believe the the pharm helps, but that other homeopathic/natural things can be as beneficial, even if it's psychosomatic. Any help from you would be greatly appreciated! Sorry for the long message, but I just wanted to get all the info out there! Danielle

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Thursday, April 11, 2013 3:04 AM
Hi Danielle, radiation has been shown to greatly reduce the pain of bone mets so this may be something your Mom could ask for, as to the constipation I'm not sure other than taking some stool softeners but hope others have more idea's and I really hope your Mom feels better soon.
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

Linda_Lee
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Re:Stage iv?? This thread is for you! - Saturday, June 29, 2013 8:37 PM
Hello, I was just diagnosed with Stage IV cancer two weeks ago. I am waiting for my first appointment with both the surgeon and oncologist on July 5th. My kids made me promise I will do everything to extend my life. That is my goal, to live as long as possible, provided I still have quality of life. I have been trying to find online stories of women who have survived Stage IV, at least for 5 years, and am not finding much. I was looking for some hope out there to keep me positive as I await my appointment next Friday. Anyone have any personal success stories?

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Sunday, June 30, 2013 6:28 AM
Hi Linda,

I'm sorry for your dx and do try to stick to the reputable sites that won't stress you out, a good one is www.breastcancer.org  there are many women living well with stage iv cancer for many years and its being treated now as a chronic rather than terminal illness in many cases. I was her2 positive and the support site I go to there has many very inspirational women who are long term survivors so you may like to check that out even if you're not her2+  www.her2support.org  sending good wishes to you 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

Rena
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Re:Stage iv?? This thread is for you! - Sunday, June 30, 2013 10:32 AM
Linda, I'm sorry about your diagnosis. As Tricia said, this is treated as a chronic illness, and there many options for treatment. I'm sure that waiting for your appointments is hard, but you and your oncologist will decide on the best treatment plan for you. was 
your tumor triple negative (estrogen, progesterone and HER negative)? If so, another good site for support and information is through the Triple Negative Breast Cancer Foundation. tnbc.org. Their message boards are very active. Wishing you the best
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

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