Osteoporosis!

B123

hello, I'm hoping to get some advice from you special ladies? I have been on arimidex for about 2 years now. I went from osteopenia before arimidex to now osteoporosis in low spine! I'm 44 years old, too young for this. My MO strongly recommends reclast once/year x 2 years. My fear is the SE jaw necrosis, etc,. I don't want to keep falling from one problem to another.. Should I switch to aromasin or Fareston or Judy do the reclast? Does it rebuild bone? Anyone who is in the same situation please advise? I'm afraid of having an IV fusion but she says it's quick and easier then pills. Thank you!!

edwards750

I had the same problem, I am older than you so maybe that's why your dr suggested that treatment. My ONC switched me to Tamoxifen and have to say it definitely helped my bone issues; in fact, I am out of the danger zone for osteoporosis. Tamoxifen isn't as easy to tolerate as Arimidex but its helped the bond issues. 

Diane

B123

thank you Diane! We're you dx with osteoporosis at one point or luckily was not there yet? I can't tolerate tamoxifen, unfortunately.. 

mdg

I had severe osteopenia and I was diagnosed in my 40's too.  I exercise all the time and had no idea my bones were so bad.  I am being treated by an endocrinologist.  He put me in Atelvia.  I take the pill once a week and I take calcium and vitamin D daily.  I have had a 5 percent increase in bone density after one year.  I am still on it.  I cannot be. Switched from tamoxifen to an AI because of my bones

B123

mdg, that is so reassuring! Although I am on arimidex but looking to switch to Fareston. I can't tolerate tamoxifen well.  We're you offered an IV fusion or did the doctor just offer atelvia? Any SE from it? Do you have to worry about any jaw necrosis?  So maybe I should go to an endocrinologist?

Pawprint

I understand what you're going thru. I am going on 4 years on Arimidex. Got osteopenia in the 2nd year of Arimidex and tried fosamax but stomach pains were bad from it. Switched to reclast infusion, but side effects of muscle pain and flu like symptoms were horrible for me on reclast. In the third year on Arimidex I went into full osteoporosis. I am getting Prolia injections twice a year to build bone. Prolia is expensive, but no side effects at all from it. I'll know if it's working when I have bone density rechecked in August. Good luck to you.

Anonymous

B123 ~ it might be worth a shot to try Tamoxifen again...and see if you are able to tolerate it better now?    Tamoxifen actually helps build bone when you are post menopausal.  I had a baseline bone scan that showed osteopenia.  When I had my hysterectomy last year, I decided to stay on Tamoxifen for the bone building attributes (I also stepped up my exercise routine, and of course take Calcium & Vit D) .... I'm crossing my fingers that my next scan shows improvement!

B123

paw print, that's it exactly!! I'm scared to death to do reclast fusion! How long did the symptoms last? Was the flu like symptoms more head or stomach? 

Have you ever asked about switching meds? Fareston or tamoxifen? I'm looking to try Fareston, tamoxifen was junk for me. 

BikerLee

oh man - that sounds scary!  what is your risk of recurrence with or without the hormone therapy?  is it possible that you could take a different approach to lowering your risk?  just trying to think outside the box....  

SpecialK

B123 - I also get Prolia injections and have had no side effects and receive an injection every six months.  It is a drug generally for postmenopausal, but speak to your doctor about it.  I was osteopenic at 45 from a total hyst/ooph, and I also fit the physical criteria - Caucasian, slight frame, etc., so may have developed it anyway.  I tried the oral meds but could not tolerate them as I have had reflux surgery.  Chemo and six months of AI drugs were enough to push me to osteoporosis at several measurements, so I started Prolia.  After 18 months I have normal measurements - not even osteopenic.

Pawprint

B123, no, I never switched meds. I have only one more year on Arimidex. I'm hoping the Prolia helps my bones. I'll be celebrating when I get off the estrogen sucking drug (Arimidex). The flu like symptoms from reclast were for me headache, muscle pain, dizziness. I'm happy to be on Prolia now with no side effects.  Hopefully, you'll have no side effects from your reclast. Best wishes to you. 

B123

susangardens, sorry I missed your post!

That sounds like a good idea, do you think since I have been on a SERM for so long that maybe I can tolerate tamoxifen better? If it's bone building it could be worth it?! It made me very moody among other things.. Hated that! Have you heard about Fareston at all? It is tamoxifen minus the CY ingredient that some can't tolerate.. But I don't hear if many on it so I'm afraid to switch again?  I can't let my bones crumble either.. Maybe if I switch to tamoxifen then I won't need reclast or any other meds for osteoporosis??

B123

biker lee, my risks are low but I still wouldn't risk not taking a SERM.. That scares me more.

SpecialK, you are no longer have  osteoporosis because of prolia?! That's amazing and your still on arimidex?! Was it a challenge to get prolia through your MO and/or insurance? I would love to go that route if I can.. Sounds so promosing. Is it something you have to do for a certain amount of years?

Paw print, thank you! I hope things go well for you as well.., 

B123

hmm I just read all the severe SE from prolia... That scared me even more then the eclast!  What if I double or even triple my 600mg calcium and step up my weight bearing, can that work without the drugs?

mdg

I just sent you a private message B123

 

SpecialK

B123 - yes, I have reversed the density issue, for the moment.  I will stay on Prolia as long as I am on an AI - I have been on both Femara and Arimidex continuously since 2011.  I had no problems with approval by my insurance and this drug was ordered through and administered by my oncologist.  I have seen some people have difficulty with approval if they have it ordered by an endocrinologist.  Prolia works differently than the bisphosphonate drugs (Actonel, Boniva, Fosamax and Reclast) and it is a monoclonal antibody.  As we age sometimes out old bone removal mechanism speeds up and the new bone building mechanism can't keep up.  Prolia slows down that old bone removal and allows your own bone development to equalize the density.  It is important to remember that some of the side effects listed for bone density improvement drugs are experienced by people who take them at much higher doses or frequencies for bone cancers.

BikerLee

b123 - glad you've thought about your risks with and without serm... sounds like you're on the right road then!  good luck - i hope you are able to find a workable treatment plan!

crog234

Like SpecialK I am on Portia.  I have had two shots and recently had my bone density test.  Last year it showed I had osteoporosis.  This time it showed my spine had improved and my hip had stabilized.  I will also stay on Prolia for the duration of taking ArImidex.  I had no problem with my I insurance paying g for.the Prolia.

RMlulu

Hi y'all 

Any info on Zometa? 

Just turned 60 and Aromasin 1yr and significant bone loss spine&ships.  First infusion next Friday, what do I beed to know and watch?

Thanks

Cindy

doxie

First I hope you have been to your dentist for a full exam and informed her you are getting zometa.  My MO wanted the dentist ok before giving me the infusion.

Before, during and after, drink lots of water.  This seems to help minimize flu like symptoms.  I got very intense bone pain in one foot, ankle and lower leg.  This stayed with me at lower levels of pain for several months.  That, I believe, is quite unusual for the pain to linger.  I suspect I had a chronic problem that zometa exasperated.  

Edited to add:  If you feel tingling in your fingers, hands or toes, take calcium.  My MO said to "pop some Tums."  Zometa draws calcium out from the blood stream into the bones, so can bring on short term hypocalcemia.  Whatever you do, don't skip taking calcium before and after the infusion.

SpecialK

I also have routine dental work (fillings, etc.) done at the half way interval between my every six-month Prolia injections per my MO.  I have not required any invasive dental work, and keep current with bi-annual cleanings.  I supplement with calcium and vitamin D.

RMlulu

Thanks Doxie and Special K

If infusion is at 11 am will, will I be good to fly at 5pm that day? Have schedule trip 1 hr and 3 hr flight that day.

Why dental approval? Have my next cleaning end of July...hum

Was planning to ask dentist about jaw pain on left (rad side) is this AI issue?

Is your bone density holding now?  Are you taking any other supplements?

Again, thank you for your insight.

Cindy

SpecialK

rmlulu - I am on Prolia, have had no side effects at all - I would be good to fly same day, and my injection takes all of 5 minutes.  The dental restriction has to do with the point at which there is the least risk of ONJ, but this si for invasive procedures, not cleanings.  Again, have had no issues, nor any invasive dental work done or needed and this is just a precaution.  I take calcium and vitamin D.  I was osteopenic, but stable, for years prior to chemo/AI therapy, but I worsened significantly within 6 months of AI, started Prolia, and am now within normal measurements - not even osteopenic anymore.

B123

hi ladies, it seems like prolia is an easier way to go? My insurance pays a portion not all. Which is really not fair, But I still would prefer that route rather then infusion.  I'm glad to hear that with staying with arimidex and taking the shot or some kind of supplement, your bones can improve..?! Has anyone tried pill form?

SpecialK

B123 - pill form of what?

B123

fosomax or atilvia?? Something that treats the osteoporosis? I'm afraid to do fusion, and feel it's not necessary, there are other options with less SE. We deal with so much already.. 

mdg

I am on atelvia.  Have been on it for over a year.  I had a 5% increase in bone density in about 10 months.  I am still on it but because of my bones my MO would not put me on an AI so I am still on Tamoxifen even though I am post menopausal.  I have had NO side effects from Atelvia at all.  I often have stomach issues from different medications and NSAIDs/aspirin.  I have had no stomach issues from atelvia at all.  I am also seeing en endocrinologist to treat me for the bone density issue.  I go every 3-4 months and have blood work.  Low bone density can be associated with parathyroid issues.  My parathyroid is out of whack too.  Calcium levels are off too.  He is trying to get things under control.  If those levels are off it can effect the body's ability to absorb calcium. 

SpecialK

B123 - Fosamax, Actonel, Boniva, Atelvia and Reclast are bisphosphonate drugs.  Prolia is a different class of drugs (monoclonal antibody) that works by a different mechanism.  I tried the oral drugs many years ago but I could not tolerate them since I have had a surgical procedure to correct reflux.