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Old 05-04-2012, 03:51 PM   #1
Mandamoo
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Join Date: Jul 2011
Location: Melbourne, Australia
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Re: Osteoporosis

Thank you
I see my oncologist on Tuesday so we will discuss more. I think I may have some trouble with getting denosumab here in Australia for osteoporosis but my stage 4 status may get me over the line.
Elaine - thank you for your tips. I have been trying to include more calcium in my diet. I don't eat dairy so I have increased my green leafy veges though I am not a tofu fan maybe I will need to learn to like it. I eat nuts and almonds and take very large doses of calcium and vitamin D - I obviously need to add magnesium in. My calcium level have been below normal all throughout treatment and my D level was low but I have managed to get it up to a very good level now. I struggle a little with weight bearing exercise as I have had an unstable pelvis since my son was born and even brisk walking gives me significant lower back pain. I ride my bike but this is not weight bearing. I will book in to see the Physio and get some weights and other exercises to help.

My mum had her first broken bone in her 40's so I have a high genetic risk too. She has had success with fosomax but does have some issues with jaw necrosis. She has lost a lot of height and broken many Bones - she is amazing though with the amount of pain she endures.

I think denosumab is a self injectable so that would be good. I have a port that needs flushing every 6 weeks so going for a monthly infusion wouldn't hurt. I think my onc is keen on Zometa to start with so we'll see what happens. Hopefully with some work from me on my diet and exercise I can help too.
Thank you very much for your input.
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Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 05-04-2012, 07:21 PM   #2
emily
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Join Date: Oct 2006
Posts: 15
Re: Osteoporosis

Hi Amanda,
I also have osteoporosis and was prescribed HRT which I'm sure contributed to my bc diagnosis. I have been on biphosphonates for 10 years. First Fosamax, then infusions of Zometa either annually or bi-annually depending on amount of bone loss. It has kept me reasonably stable but I know that i can't stay on it forever. Forteo is an option if you haven't had radiation. It would be worth asking your onc about this drug. I think that denosumab is only available on PBS (I'm an Aussie too) for women over 70 or those with bone mets but your onc may be able to get it for you.
Best wishes,
Emily
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Old 05-04-2012, 08:43 PM   #3
Mandamoo
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Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: Osteoporosis

Thanks Emily
I was searching the PBS this morning and it looks like Fosamax might be my only option under the PBS as I have not had any fractures (thank goodness) and I am under 70. There may be a loophole somewhere - on reading it seems denosumab would be the preference. I don't think I even qualify for zometa.
I'll look into and ask about Forteo too. I'll let you know how I get on.
Thanks for your input.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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