Annual DEXA

harrie · 09-21-2008, 11:04 PM

It has been recommended that I have my DEXA (bone density) done annually, rather then biannually, due to the fact that I am on AI and I have osteopenia. Are there many of you out there that also need to have the DEXA done annually and if so, do you have any problems with insurance coverage?

tricia keegan · 09-22-2008, 01:15 PM

Hi Maryanne, I can't really help with your question living in Ireland but wanted to say I get mine every eighteen months. Hope your insurance is okay with yearly and good luck in advance.

Jean · 09-22-2008, 02:11 PM

Hi Maryanne,
I have my bone density yrly....and I have not had a problem with insurance...I believe since I am on AI and
Actonel...that a yrly checkup is the norm.

hugs,
Jean

PinkGirl · 09-22-2008, 02:50 PM

Hi Harrie
I have a bone density scan yearly for the same
reasons you mentioned.

Barbara2 · 09-22-2008, 07:13 PM

I have the DEXA done yearly and have had no problem with insurance paying for the test.

sassy · 09-22-2008, 07:18 PM

Mine is annually also.

Yorkiegirl · 09-22-2008, 07:45 PM

I have a yearly as well. I have very bad Osteoporosis, and I also have trouble taking actonel or any thing else.

Patb · 09-22-2008, 08:04 PM

I also have mine annually because of Arimidex and
thinning bones. The insurance is no problem.
patb

Chelee · 09-22-2008, 10:58 PM

Harrie, I had a yearly DEXA just recently and no problems with insurance covering it. I'm not even on an AI and my bones are worse in the year's time. Yearly seems to be the norm.

Chelee

harrie · 09-22-2008, 11:14 PM

Thanks everyone for responding. I presume all of you either have osteopenia or osteoporosis.

Another question just popped in my mind.
Do you think being on Tamoxifen can contribute to osteopenia? way before I was ever on a AI, I was on Tamoxifen for 5 yrs and that is when I developed osteopenia. I was shocked because I was going to the gym like 5 days a wk doing a LOT of strength training too.

Chelee · 09-23-2008, 01:23 AM

Harrie, I can't answer your question about the Tamoxifen & osteopenia? All I've ever heard is Tamoxifen is not as hard on the bones as taking an AI.

You are right to presume that my 1st DEXA scan last yr showed osteopenia. I was really surprised by the results....I did not expect that.
Then this 2nd DEXA I just had showed I'm now closer to having osteoporosis. In fact it said a significant decrease in bone density. For some of us it doesn't seem to matter how well we ate or exercised...because we still were dx with ostepenia.

Chelee

harrie · 09-23-2008, 04:41 PM

Chelee, has your onco considered putting you on Zometa? I read an article where is also good for reducing the recurrence of bc. The artice is posted at this site somewhere.

Chelee · 09-24-2008, 12:21 AM

Harrie, I have been concerned about my bones after my 1st DEXA. The recommendations on the report were to start me on a bisphosphonate drug. My onc said it wasn't needed at that time since I just had osteopenia. (The report also mentioned I'm at double the risk for hip facture.) I expressed my concerns that I thought the whole idea was to start on a bisphosphonate to help strengthen the bones and prevent osteosprosis. She said it is but they have lots of side affects so I should wait.

So not long after that I went up to the City of Hope & spoke to my 2nd opinion onc and she too agreed I should wait. I went through my concerns with her too and she said if I really felt it was needed I could start on Actonel...but she did not recommend it at that time. I've also spoke to my Endo about this and he is on the same page as both the onc's I see. (I DO NOT understand it?) In fact I just went through this with my Endo a month ago since my recent DEXA showed major changes in my bone density. He increased my Vitamin D and other then that was STILL against me starting on Zometa or Actenol. He did tell me if I really want it that bad they would give it to me.

So I don't know what to think? It seems most all the women on the boards that have even a touch of osteopenia are on a bisphosphonate. I don't know why I'm getting so much resistence from 3 doctors when my DEXA is so bad?! Since I could NOT have rads and I am not on an "AI"...it seems being on zometa would at least be something I could do for my bones and also to help prevent recurrance as I have read the study you mentioned. These doctors are so good at making me feel like I'm the one that's wrong. It's strange how all three are against it. I just don't know what to do at this point?

Chelee

Gerri · 09-24-2008, 09:01 AM

Chelee,

As you know, I am quite familiar with your 2nd opinion onc. For some reason I am able to persuade her to see my side if I give my reasons. It looks like you had all of the facts on your side so I don't understand all of the resistance. Your bone loss sounds more severe than mine. Is there any other reason they would be so reluctant to start you on a biphosphonate?

I was on Tamoxifen for 2 years before finally going into menopause and switching to Femara. At the time I asked for a DEXA. My onc told me that since Tamoxifen strengthens bones she did not think I was at risk but would order the test to be done before my next visit in three months. Well, it turns out that I do have osteopenia of the lumbar spine. She was a bit surprised but did not want to start me on anything saying we should wait another six months to see if it progressed. I told her that I really didn't want to wait. She relented and offered to put me on Fosamax. I told her that I was hoping to start on Zometa but asked her why she was recommending Fosamax. She said it was easier to take (a pill as opposed to an IV) and asked why I was requesting Zometa. I told her there was new research out about the combo of Femara and Zometa in preventing bone mets. She agreed to go along with me and ordered the Zometa.

Sometimes I surprise myself with how bold I have become. I will probably have to ask for another DEXA in a year, but I will do what I have to for my own piece of mind. Don't give up on this. Go in armed with copies of the research to make your point.

Good luck with all of this!

Chelee · 09-25-2008, 12:19 AM

Gerri, How do you know who my 2nd opinion onc is...have your been stalking me. lol My onc at "COH" said I could go on Actenol if I really wanted it but her recommendations were to wait. As I mentioned in my post all three doc's said I could have it if I really wanted it. I just don't understand why they are so hesitant to start me on it? Other then the possible side affects. So its not like they won't let me start on a bisphosphonate...but they put the entire decision on me. You would think out of my two onc's & one Endo at least one would be for be starting on zometa asap with my history of bc & decreasing bone density.

My problem is they make me second quess myself when I have all of them telling me to wait regardless of how bad my DEXA results were. It boggles my mind! But don't get me wrong...they said I can start on one if I really want it that bad. I would think THEY would all be supporting me in this decision...not placing doubt in my mind.

I see your onc wanted you to wait too? That's what bothers me...what do they want us to wait for? My endo increased my Vitamin D dosage but that's it.

I thought if I waited a little while one of these doc's would start me on a bisphosphonate without leaving it all up to me? (They seriously make me wonder why they all say to wait?) From everything I've read & know about it they should be insisting that I be on one of these drugs with my medical history? I just don't get it?

Gerri, when do you start Zometa, & how often you will be doing your infusions?

Chelee

Gerri · 09-25-2008, 06:12 AM

Hi Chelee,

I had my first infusion on August 11, and will get one every six months. I'm not sure why my onc wanted me to wait, the only thing she said was to test again in six months and see if it was worse. My thinking was that I already have osteopenia, am taking Femara - which can cause further bone loss - why would I wait? She made sure I was taking calcium and vitaminD, which I have been for quite a few months.

I had some joint issues the week after the infusion (swelling of my knee and fluid drained) and have seen a orthopedic surgeon and a rheumatologist. The rheumatologist ran some tests to see if I have an autoimmune disorder now, I get the results tomorrow. If all tests are negative he is blaming it on the Zometa - but we won't know that for sure until my next infusion. I will ask him tomorrow about the pros and cons of being on this drug. Maybe he will be able to give some insight. I'll let you know if I find out anything interesting.

Take care,

harrie · 09-25-2008, 04:44 PM

Chelee,
I really don't understand why your docs dont start you on the biophosphanates. I have been on Fosomax for like 6 yrs now and started when I found out I had osteopenia. I have not had any side effects from the med that I can tell. Nothing.
Be sure you not only take the Vit D3, but also do wt resistance exercises. Walking at least, or running. That will all help and should most definitely be done.

Chelee · 09-25-2008, 11:12 PM

Gerri, I felt, and still do feel the same say you did when they say to wait. Wait for what...till I have full blown osteosprosis and take a good fall? Normally I would of just told my onc I wanted to start on Actenol, or zometa...but since I had all 3 doctors against it...that stopped me. If it had just been one doctor telling me to wait it wouldn't of bothered me at all. But 3 out of 3 put major doubt in my head. I hate all these decisions.

I had no idea you already started on zometa. Sorry to hear about your knee. Have you ever had problems with that knee before....or is this something entirely new that could be caused from the zometa? What's your thoughts on it? I would be interested in the results of the test your rheumatologist took & any feedback he may give you on continuing on zometa.

I took some time tonight to read up on Zometa & it's side effects since that would be my personal choice. Especially since it can prevent bone mets. Like all drugs, it does have a long list of possible side affects to be concerned about...but what drug doesn't. That seems to be my oncologist biggest concerns with any and all of these bisphosphonate meds. Obviously I am going to have to decide when to start on them because none of my doctors are going to do it. Sometimes I can't help but think they want me to decide...that way if there are any problems they can say they warned me but I didn't listen to them?

Let me know what you find out tomorrow Gerri. I hope they get this figured out for you so that you know what's causing the problem. If it is the zometa then you can switch to Actenol, or Fosamax and see if that's any better for you? Good luck.

Chelee

Chelee · 09-25-2008, 11:30 PM

Harrie, Is your onc the one that suggested you start on Fosamax...or did you request it yourself? That is reassuring to hear you've been on it six years with no problems. Have your DEXA scans shown improvement since you've been on Fosamax? Or if nothing else shown that your bones haven't gotten any worse since being on it?

That's my biggest concern is to at least stop my bones from getting any worse. I had such a significant change for the worse in a touch over one year. I really can't understand how its not benefical to get me started on something soon? I have increased my D3 quite a bit...and I'm working on walking more. Its been so hot here I have to admit I've slacked off a bit. But I have waited till early evening and take the dogs for long walks...they love it and its good for me. Thanks Harrie.

Chelee

harrie · 09-26-2008, 12:02 AM

Chelee,
Actually, it was my OB/GYN that had me do the DEXA and he was the one who told me I should go on Fosomax to prevent further bone loss. I was having the DEXA done every 2 yrs. My last DEXA on 10/07 said my bone density is sig lower in the femoral neck then the lumbar spine comparted to 2002. It is just below the normal limits and still defined as osteopenia and not osteoporosis. But now that I am on AI, my oncologist wants me to do the DEXA annually.
The most common side effect that some people get is like a burning sensation in the esophagus. I never got ANY side effects like that.
I take mine once per wk and I have never experienced a side effect yet.