Osteoporosis

[Mandamoo]

Hi everyone
I have recently been diagnosed with osteoporosis (I am 39). I have stage4 disease with lung mets. I am currently on Tykerb and Xeloda.

I am wondering what to do about my treatment for osteoporosis. My one is keen to treat me - thank goodness she hasn't written me off yet. We are talking Zometa or Denosumab (Xgeva). I am not keen on Fosamax.

My one is tossing up whether I have a cancer dosage (as in a dosage for bone mets which I don't have) or an osteoporosis dosage as she said there is some very limited evidence that perhaps it cold be preventative.

Any thoughts and experiences would be appreciated. I am hormone negative but we assume premature menopause from chemo and family history have played a role here.
What are other people doing?

[Redwolf8812]

Hi, Amanda. I'm sorry to hear about this. It just seems to never end for all of us. Have you ever perused www.breastcancer.org? I just found this on their website about osteoporosis - http://www.breastcancer.org/treatment/side_effects/osteoporosis.jsp

(hope I'm allowed to post a link to another website).

Keep us updated.

- Penny

[LouLou]

Hi Amanda
I was dx at 39 and developed osteoporosis from chemo induced menopause, since I'm triple positive I was commenced on an AI and 6 monthly zometa but unfortunately my BMD dived another 11% and I had to stop hormone therapy - I had low hormone receptors and Onc thought SE of further BMD loss outweighed the benefit.
My period returned at the 2 yr mark and I ceased the zometa after 4 doses, my last Dexa scan still showred osteoporosis despite being premenopausal and zometa but there was no
further BMD loss which was good.
I'm not sure my post is very helpful but 6 monthly zometa really didn't increase my BMD at all, I also take calcium and high dose of vit d and do a weights program and run at the gym.
I will have another Dexa scan in 6 months and hoping for an improvement this time.

[ElaineM]

If you don't want to take drugs like Zometa you can increase your calcium, magnesium and vitamin D. Calcium rich foods and a little daily exercise may also help. A physical therapist can teach you exercises for osteoporosis.
All the best to you.

[Becky]

Both drugs - Zometa and Denosumab have shown anti cancer properties (as well as bone strengthening properties). More recent studies confirm this in Denosumab so... thinking about that, perhaps adding Denosumab to your cocktail (I do think this in an infusion and you aren't on any infusions now but what the hey), you should add it in. It might be synergistic with the Tykerb/Xeloda and give added benefit on those pesky lung mets too (while hardening the bones). Just a thought.

[Mandamoo]

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.

[emily]

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

[Mandamoo]

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.

[suzan w]

I had great success with daily injections of FORTEO for 2 years, followed by an infusion of RECLAST (Zometa) at the end of the 2 years and then again a year later. I achieved an 18% increase in bone mass. My rheumatologist was so excited, as was I, at these results.