Reclast?

Kathy044

What measurements do they use in Australia Ariom? Canada uses the metric International measurement nmol/L so I believe does the UK.  I was tested several months before breast cancer dx (in the summer) and my score was 90 which was in the normal range. After dx I increased my dosage from 800 iu to 1200 iu and then at my Dr's suggestion to 2000 iu/day. My last test in 2013 was 139 nmol/L

The interpretation of the report for the Vitamin D, 25-Hydroxy test listed

<25  Deficient

25-74   Insufficient

75-199   Sufficient

> 200 Toxic

Now waiting to see my dexxa results, had a bone density test last Sunday, have been on anastozole for 4 years now and am considering stopping. 

ETA: I just checked. Australia measures in nmol/L.  Also:

http://en.wikipedia.org/wiki/Calcifediol

"US labs generally report 25(OH)D levels as ng/mL. Other countries often use nmol/L. Multiply ng/mL by 2.5 to convert to nmol/L."

Kathy

Ariom

Hi Kathy, we have metric measurements here in Australia too.

The chart you have supplied shows my reading as being on the low side, so I guess I should be taking the 2000iu that my Doctor suggests. I spend so much time outdoors, I wonder why I don't get more natural Vit D. In Australia, we get plenty of sunlight.

My issue is that I have been taking steroids (cortisone) for RA for about 18 years along with injected Methotrexate for over 7 years.  I have had an Osteoporosis reading of -3 in my spine since 2002, it hasn't worsened, but it is a scary reading. I had 3 breaks, in the same foot, in the same year, a few years ago. The moon-boot was like a fashion statement that lasted too long! LOL

I have had SE problems with both Reclast and Actonel, so really just have to rely on eating as much calcium rich food that I can and taking Vit D and Calcium supplements. I have to get into some serious gym work, but the RA can flare if I overdo it.

Edited to say 2000iu

Niloc

I've had five IV infusions of Aclasta (same as Reclast) over five years, luckily I have had no side effects. However, due to stainless tubes in both femurs I can't have DEXA scan, so can't say if it is improved or not. I don't think I'll risk another due the long term SEs.

Wife had bad reaction to Aclasta (Reclast), so she refuses that again, has tried all the rest but due to combinations of reflux, feeling lethargic, etc of oral weekly tablets is unwilling (understandably) to try the longer term tablets and have a long drawn out reaction. It seems to be very individual as to how each person tolerates the various drugs used to treat osteoporosis, osteopenia. If you are willing to give them a try they may help, but it is your choice. We both worry about jaw/dental problems and the risk of brittle fractures but we have also seen friends with advanced osteopenia of the spine and that is frightening.

We both take Vitamin D, fish oil and DW takes Calcium supplement and Calcium rich drinks too (I can't take Calcium tabs) but eat cheese and milk. Her scan result has not changed in years though. Exercise that loads up the bones is probably our best option as moderate loading (avoid impact exercise) that the long bones receive triggers stronger bone build up and conversely, sedentary life dies not help at all. We feel diet (with supplements) and exercise will be just as good as these drugs.

It really is a difficult choice - damned if you do, damned if you don't. Boils down to personal choice.

RMlulu

Have been reading through this thread.

MO scheduled Zometa infusion for this Friday 7/11. 

One yr anniversary of Aromasin gift of bone loss...wow it was a nonevent until bone scan...I walk 4-6 miles 5 days a week, lift weights, exercise, dance, pound my bones so...AI & bad genes???

Any feedback is welcomed...supplements also.

Thanks

lago

RMlulu same problem on Anastrozole. Chemopause is when I had the largest drop. Was osteopenic before chemo. Seems to be stable for a few years but I knew it was just a matter of time. I'm just over the border. Yes I have family history and small frame. Some of us just can't ward it off with just exercise.

PinkWalker

Hi Conniehar and others,

I just found this thread and thought I would share my experience.  I have had Reclast twice, with absolutely no problems with the actual infusions.  However, that is not my whole story....I had been on Fosamax for over 9 years when I suffered a one of those "rare" femoral fractures mentioned in the drug's literature.  I had a femoral rod placed and spent the next 4 months in a wheel chair with absolutely no weight-bearing allowed.  About 3 months into my recovery, the news came out to the public that this is a rare, but possible result of taking Fosamax for a long time.  It is now recommended that the patient take a "medication holiday" from it after 3-5 years.  I can't say that the Fosamax is solely responsible for my problem, as I had also had chemo and had walked hundreds of miles training for and completing 2 half marathons and a 3 day cancer walk.  I just want to make everyone aware so they will know what to discuss with their doctors.  I'm now caught between differing opinions from several doctors as to whether I should continue the Reclast infusions.  I'm leery because Reclast is another bisphosphonate (same class of drug) and can cause the same issues.  After consulting with a specialist at Duke, I have decided to take nothing, other than calcium and vitamin D, for the time being.  I seem to be holding my own, fingers crossed!  I might add that there are other classes of drugs that might help, but in my case are contraindicated for other reasons.  Anyway, that's my experience and I hope it will at least help you ask important questions of your medical team.  Good luck!

cakes

RMlulu - I had a Reclast infusion Oct 2013 and had a bad reaction: my MO said the next time would be easier. ???? You are more than likely taking calcium and possibly Vit D. I take New Chapter Bone Strength calcium which is from whole foods and can be taken on an empty stomach. I take sublingual Vit D but didn't know until recently that I should take some Vit D in the morning and some in the evening. I tested for Vit D deficiency and was told to take MORE!!! So….I will. I had osteopenia in my hips before this lovely journey but it is more prevalent since the radiation. I am almost afraid to get my next DEXA after being on Letrozole since Oct 2013. I will just deal with it. LOL! 

Golden01

Will be seeing my MO this week for the Reclast discussion. Appreciate all the information being shared. Gives me good questions to ask. 

Chris13

Couple of questions.....my before/after 2 years of anastrazole (ha, ha, spell checker wants to change the word to "stanglehold") -- shows 5% decrease in bone density. Still upper range of osteopenia in 2 places but 2.8 in femoral neck. This despite supplements, exercise. No chemo or rads for me.

Does anyone know if the AIs continue to decrease bone density or if it levels off, assuming no changes in exercise/supplements.

And what exercises would be good for the hips? I have access to a good Y, so can benefit from those weird machines if I knew what I was doing.

And sending positive energy and good thoughts to the rest of you suffering/dealing with this darn disease.

lago

Chris it's the reduced estrogen that caused this bone loss. Weight bearing exercise like walking. Swimming not so much. But some women do fine with just exercise. Some like me exercise isn't enough. Family history, small frame,  (I got those) and a host of other things also add to the equation. I've stable for a while but then my spine moved just into osteoperatic range. Everything else is stable. So I assume my daily powerwalking (3-4 miles) has helped my hips and femoral neck (I think it's the femur they are referring to not your actual neck )

Your doctor should make some recommendations. 

Chris13

Thanks, lago (BTW, am a former Lincoln Parker myself....long ago)--

I do walking, knees shot from years of jogging but do jog a bit, swim (not for bones), take extra calcium and d3 (will take more and have a calcium that is supposed to be more bioavailable) but as you say, it's the AI and genetics. I guess I have to chase down my onco and primary. Onco left message several days ago we should talk (after the DEXA test) but no follow up. Typical, right? 

lago

Chris my onc told me to take calcium. Now that I have osteoporosis I see a Rheumatologist. She cut my calcium in half and said I should get the rest from food. I make sure I eat a yogurt every day although I do get it from other foods I eat (green veggies).

My sister lives in the Phili burbs. For a short time in 1991 I lived over the river in NJ.

Chris13

thanks lago. (For some reason I thought you lived in the Lincoln Park section of Chicago.) I will increase my calcium in foods. I know just popping calcium isn't necessarily effective, and now I have a better combo that supposedly is more bioavailable.

I'll ask my onco to check (my next 6 months visit) my calcium plus my D. I had D tested but can't remember or find the value. It was in the okay range, but I am doubling to 2000 mg/day. D3 of course.

Need to figure out what weight exercises best for the hips. 

lago

Chris I currently live in LP section of Chicago near the Zoo and Nature Museum. 

lago

Oh and check these exercises out. 

http://nof.org/articles/543  

http://nof.org/articles/553  

Moviemaniac

Hi ladies-I doubt I can add much to the discussion, but will say I was on Actonel for years.....eventually didn't work for me, and I went from Osteopenic to full-blown Osteoporosis.....( genetics play a role here, for sure).   My endocrinologist gave me Forteo for 2 years (the Max allowed)and my bones were actually in the normal range this last DEXA scan.  But I was told that any gains I had made on the Forteo would be lost without further treatment.....no more Actonel, as that had become useless in my treatment, so a month ago I had my first Reclast infusion.  The treatment was dripped in slowly over 1.5 hours (they said they had fewer SEs like that).....and other than feeling a bit run-down, after 3 days I was back to normal.  It is supposed to get easier each time, as well.  I also take 1500 mg. of Calcium, and 2000 IUs of D3 daily.  I will see what my next DEXA scan in November says.........

Chris13

thanks, Lago. BTW, we were on Fremont near Armitage at the beginning of the LP Renaissance.

lago

A friend of mine lived on the corner of Dayton and Armitage in 1981. We were in school then. Go west of the El and things got a little creepy at night. It's all Shee Shee now. Lots of shopping. I love living near the lake/zoo/park

conniehar

Thanks to everyone for sharing your experiences.  I hope you stay stable PinkWalker and I am sorry to hear about your break from Fosomax.  I have heard great things about Forteo, Moviemaniac but I did read that after the 2 years you do have to go back to something else.

I have just been told I have Hypercalcuria (excessive calcium in the urine that is supposedly pulled from the bone).  So, I have been put on a diuretic to see if that helps.  But, I also believe I will be going on Forteo, Reclast (again) or Prolia.

I have just been doing a lot of walking the past few years , but when I received the lastest scan results I started a consistent weight training routine in addition to the walking.  Hoping it helps!

Good luck all!

conniehar

I am doing a version of these exercises....

http://lauvemetcalfe.com/uploads/icaa-best-article...

lago

conniehar that's interesting. I my calcium was a little high and I was told I might have celiac disease (by the endocrinologist who I eventually fired). My gastro doesn't think so but did recommend I get an "esophocam" 

I am already on a small amount of diuretic. 

RMlulu

Still reading on bone health...just brings more questions to mind.

Tamoxifen - no bone loss or slight? Can switching to tamoxifen restore or strengthen bones?

AI - bone loss a given for some, but will Zometa or Prolia or reclast or? work for 5-10 years?  Or watch and change? Is it safe?

Does anyone just say no? 

QOL is issue wondering stage 1b micro mets %% more likely for recurrence so did surgery rads and AI, but will bones get better with the drug combo each year?  Just wondering about QOL?

Would love feedback from those further out.

Thanks

conniehar

Lago - I supposedly was given a test for Celiac and it came back negative.  The high calcium in the urine came from a 24 hour urine test (lots of fun).  I had to do it twice to make sure it wasn't just a one time thing.

RMlulu - I had bone loss when I was on Tamox.  I am attributing it more to chemopause than the meds, but who knows?!?!?

I only had one Reclast infusion and my density dropped but Dr has told me it usually takes 2 years for you to see a benefit.

This is so frustrating because the bone loss is so slow that you have no idea if anything that you are doing is helping...  or hurting...

lago

Tamoxifen may help bone loss. I don't know the medical terms but Tamoxifen blocks the estrogen from breast cancer but in some cases will increase which can help bones or cause endometrial cancer (low risk of  later) 

Connie my test came in low for Celiac but still positive. Only way to know for sure if Endoscopy. Haven't done it though.

Golden01

I believe Tamoxifen's effect on bones is different depending on if you are pre- or post-menopausal. A negative impact for those that are younger and protective once a woman has hit menopause. Saw my MO yesterday for the switch to an AI. Will finish up a few weeks of my Tamoxifen, then go off Tamoxifen for a week before starting the AI, take it for a month, then go back to see him. We'll figure out what do to about the bones then. Most likely another DEXA in October and perhaps Reclast then too. He's recommending Reclast over oral  bone-building meds due to possible reduction in recurrence. He spent a lot of time explaining the AIs and what I might expect and options if I do have side effects (going back on Tamoxifen, for one). Scheduling another visit in two months rather than four rather took my breath away! It makes sense for the medicine adjustments and decisions about bone building meds but seemed like I was going backwards!

PinkWalker

Hi Conniehar,  it's all so complicated and unfortunately, one "fix" does not fit all.  I am ER and PR negative, so I don't have to deal with those drug decisions.  However, I have always known that I would one day be dealing with these issues, as I have something like 7 out of 8 risk factors.  My PCP says calcium from food is absorbed better than calcium from pills, so I am trying to increase my dietary intake.  Maybe that's why I'm holding my own.  Who knows?  My PCP calls me "an interesting patient", something no one wants to be!  It would help if doctors could agree on best treatments! Good luck to all.

Momine

RMlulu, I am "only" osteopenic, but very close to actual osteoporosis on my spine (although my hip is 100%, go figure). I am also on an AI, but the osteopenia predates the AI. It has just gotten worse on the AI+ induced menopause.

My onc is all itchy to put me on prolia. So far I have refused, because I do not feel like anyone is giving me good answers, maybe because they simply don't know?

Like you I want to know if 

1. the gains from reclast or prolia are "real" and lasting?

2. there is a decent chance of bone loss stabilizing at some point?

3. at what point of bone loss is it actual critical to do something? [-2.5 is osteoporosis, but I get the feeling from docs and articles that fracture risk only gets high at much lower bone densities.]

doxie

Momine,

Great questions!  

As to #3 I read somewhere some time ago that the decision for -2.5 to indicate osteoporosis was determined at an international conference in Spain.  Experts debated where the marker should be and the decision was made by committee.  We all know how decisions by committee can be.  As I understood it, -2.5 was where treatment should begin, not where bones would be impacted by density losses.  Over time osteopenia began to be treated, but wasn't considered at this conference in Spain.  I wish I could find the reference material, but I read it a few years ago.

With AIs I see the importance of being proactive treating osteopenia if you are showing density declines.  If you are stable, then it may be better to wait.  I've stayed stable through chemo and over 2 years of AIs.  My MO insisted on zometa 2 years ago, then backed off after one infusion when I was having SEs that might have stopped me from taking AIs.   I didn't want zometa in the first place, so now have stable density results to hold off further.  

lago

Momine your story is like mine. Spine the problem. Everything else osteopenic. Has this before treatment but chemopause/chemo made it worse. Was stable then all of a sudden my spine becaume -2.6. Just over the border. The issue is it will continue to get worse on AI. I would rather take the drug now before it gets really bad because it also protects the bone too. Once that bone is lost we don't know if you can really get it back ( or if these drugs that do help density are actually making good bone).

Momine

Iago, sorry, that was unclear. I only have osteopenia in the spine. The spine was -1.7 when I started the AI, now it is -2.0, so it has declined further on the AI. One of the vertebrae is all the way down to -2.4.

However, my hip was +something when I started the AI. The first year on the AI it declined quite a bit to something like -1, but then it recovered and is now back to normal. That is without any drugs, just exercise and a small calcium supplement.

So, I can't help but think that if I was able to reverse bone loss in my hip, even with menopause and an AI, why can't I maybe reverse it in the spine as well.

I am also trying to understand how I can be building bone in one place (hip) while losing it in another (spine).