need some help on the bone density issue

momand2kids

Hi,

I am looking for some advice/information/reassurance.... I am 2.5 years out of dx--- had a lumpectomy, chemo, rads, and have been on lupron and femara (I could not do tamox due to an earlier blood clot)... I went into this with really strong bones--- my first bone density test after  a year of treatment showed some loss, but I was still in the normal range.  My onc and I had discussed zometa but I was opposed to taking any more drugs----

 I had my 2011 bone density test in May-- haven't seen the results, but got a call from PCP office today asking me to set up an appt.  I anticipate this is about the test.... and I think it may be that there is more loss and the discussion about bone density drugs is about to begin. 

 What are people taking?  what are the side effects?  I just hate the idea of taking  more drugs, but I don't want to be stupid about this..... sigh..... 

any advice would be greatly appreciated. 

cycle-path

I've been on Reclast, which is another version of the same thing Zometa is made of. (Google "reclast zometa" and you'll see a comparison of the two.) It's an annual infusion, though I think Zometa is more frequent. I've had no side effects whatsoever. The only way I know I've had it is the bandage after the IV. For all I know they could be infusing saline. I know some people get SEs such as joint pain but I've literally had no SEs whatsoever.

susand

cycle-path, can I ask how many infusions of Reclast you have had?  I am due for my first one in a week and I am very hesitant.  There were so many side effects listed.  I would appreciate any information you could give.  Thanks.  Susand

Octobergirl

I've taken Zometa for 1.5 yrs. My first DEXA scan showed spinal osteoporosis (I had always been active and strong) so I asked to increase Zometa to every 3 mths. which I've taken for a year. Just had my 2nd DEXA and now I have 7% bone loss in the femur/hip area in the past yr. despite the Zometa.  My onc was very concerned and changed my tx. to Denosumab every 3 mths. to try to get this under control. I had my first injection last Thursday and have had fewer aches and bone pain since. Hoping for a turnaround or I won't be able to continue Femara - not my favorite med but I sure don't want to have to stop taking it. 

If I were in your shoes and your onc confirms bone loss, I would get started on Zometa or an equivalent before to manage the problem before it gets worse.  It can get much worse. I hate being hypervigilant about losing balance and falling or breaking a wrist, arm, rib, hip, knee or spine compression. BTW, I had flu-like symptoms a few days after the first Zometa..not bad at all. After that, I asked that all infusions were given over 30 mins. instead of 15 and no more problems. No side effects from the Denosumab.

cycle-path

susan, Reclast is only once a year so I haven't had very many. I think it's been 3 infusions. 

I literally can't tell I've had it afterwards. No SEs at all. Before Reclast I had IV Boniva, and no problems with that either. But I was put on IV Boniva because I had horrible SEs with oral Fosamax. Generally I'm one of those people who gets all the SEs, but none with Reclast or IV Boniva. So you just never know. 

Claire_in_Seattle

I still have normal bone density and my own plan is to do nothing.  I posted on this topic a few weeks ago.  Anyway, the place to do research is with Dr Miriam Nelson who is the expert in this field.  She is at Tufts.

In my own case, I expect that calcium, vitamin D, and weight bearing/strength training exercise will see me through the remaining 4 years of anastrazole.

One of the things I read is that any women who start out with normal bone density are highly unlikely to end up with osteoporosis.   Also, my learnings from the work of Dr Nelson is that exercise alone is sufficient to rebuild bone density.  This is even true of people in their 90s.

So worth checking into. We should be exercising anyway.  Good luck. - Claire

momand2kids

Thanks so much for your responses.... I emailed my pcp about the visit and it had nothing to do with bone density--then, while I was on the site, I found the bone density report from May--- totally NORMAL!!!!!  One less thing to worry about--- 

I am doing the calcium, vitamin d and the weight bearing exercises--- have done this long before BC... so it must be working!!!! I am so delighted to not have to worry about this right now.....

thanks again-- I am going to keep working on this..... 

Claire_in_Seattle

MAJOR WARNING:  I had a networking meeting with a friend of mine today and he asked me not to raise my (very toned) arms over my head.  Too distracting.

But important counsel as networking my way into something great career-wise.  I need to work this one (but not with male direct reports).

I am so thrilled for you.  We need to work on real, not imagined, issues.

I was relieved to learn that bone density was NOT on the list.  Equally relieved when I met with my internist last September and he pronounced me in perfect health.

I will go with both.  Wonderful news, and hope Friday's visit goes just fine. - Claire

Annabella58

Hey Claire, I just want to thank you for your upbeat and encouraging post.  There is such a major rush to put women on these things..my own GP wants me to stay away from bone drugs as long as possible; she feels they cause more problems down the road.

I haven't even had a scan done in three years since I have no intention of taking anything.  D, Calcium, an air stepper, vitamin K for me.

Thanks again, you are a breath of fresh air.

Fearless_One

First of all, you are always entitled to go pick up your own test results.   You don't need to wait to see your doctor.   Secondly, yes, some women go from normal to osteoporosis in a very short time.   I have gone from normal to osteopenia in one year and am only 46.

If your density is normal, that's great - I wouldn't go on a drug either.    But just be aware that supplements don't always do the trick.