Osteoporosis diagnosis while taking Arimidex

lynn1950

Hi ...I am on a second five year regimen of taking Arimidex (after treatment for Stage 3 BC in 2008) and although I have been taking Boniva since being diagnosed with post-chemo osteopenia, I have now been diagnosed with osteoporosis.  I am seeing an endocrinologist who wants me to start Prolia.  Anyone here have experience with this drug? The side effects are similar to Boniva's, but somehow feel scarier. Thanks for your info!  Lynn

grannabeth

I am on prolia

I was diagnosed with osteoporosis last August just after my radiation treatments for breast cancer and just prior to starting Tamoxifen.  I am seeing an endocrinologist.  She gave me the choice of either Boniva or Prolia.  I chose the Prolia because I didn't think I could cram down one more pill.  I had my first injection in Nov 2013 and just had my second injection last Tuesday the 27th.  So far, I have had no side effect whatsoever.  I just learned that before every injection, I have to have a blood draw to see liver levels, Vitamin D levels and calcium levels.  Before I could even take the first one, I had to take 50,000 units of Vitamin D for 16 weeks to get my levels up high enough to take it in the first place. Now I just tak the 50,000 units once a month and she said my levels were good this time. I like just having to go in twice a year instead of a daily pill. Hope my experience is helpful in making your decision.

Beth

Christmas Girl

Awww, Lynn...

Can't offer any specific response to the info you seek, hon. But, I hope you'll do well with the Prolia.

(((Big Hugs)))

Kindest regards, Susan

lynn1950

grannabeth said:

I am on prolia

I was diagnosed with osteoporosis last August just after my radiation treatments for breast cancer and just prior to starting Tamoxifen.  I am seeing an endocrinologist.  She gave me the choice of either Boniva or Prolia.  I chose the Prolia because I didn't think I could cram down one more pill.  I had my first injection in Nov 2013 and just had my second injection last Tuesday the 27th.  So far, I have had no side effect whatsoever.  I just learned that before every injection, I have to have a blood draw to see liver levels, Vitamin D levels and calcium levels.  Before I could even take the first one, I had to take 50,000 units of Vitamin D for 16 weeks to get my levels up high enough to take it in the first place. Now I just tak the 50,000 units once a month and she said my levels were good this time. I like just having to go in twice a year instead of a daily pill. Hope my experience is helpful in making your decision.

Beth

Thanks for sharing your experience

Hi Beth.  I am so glad to hear that you haven't experienced any side effects.  I now take Boniva once a month and it seems like many of the possible SEs for Prolia are similar to Boniva's.  

CypressCynthia

Prolia is a great drug and

Prolia is a great drug and should help your osteoporosis a lot!  With any bisphosphonate (which both prolia and boniva are), I recommend heading to your dentist before starting.  Good dental hygiene may help prevent jaw osteonecrosis, usually a rare adverse effect with prolia and boniva, but more common with the stronger versions for bone mets.  Avoid very invasive dental work like implants and extractions while on the drug, but do get cavities taken care of immediately (fillings are ok and will help prevent more extensive work).  See your dentist every 6 months while on the drug!!!  If you have a painless mouth ulcer on your jawbone and not on soft tissue, see your dentist right away.

The main side effect that some experience is a flu-like reaction - especially with the first few injections.  Luckily, this usually goes away and, the great thing about prolia is, you only have to worry about it 2 X a year. I bet you will not have it as you have been on boniva!!!

Good luck and I bet you bones get a lot better!!!!

 

lynn1950

CypressCynthia said:

Prolia is a great drug and

Prolia is a great drug and should help your osteoporosis a lot!  With any bisphosphonate (which both prolia and boniva are), I recommend heading to your dentist before starting.  Good dental hygiene may help prevent jaw osteonecrosis, usually a rare adverse effect with prolia and boniva, but more common with the stronger versions for bone mets.  Avoid very invasive dental work like implants and extractions while on the drug, but do get cavities taken care of immediately (fillings are ok and will help prevent more extensive work).  See your dentist every 6 months while on the drug!!!  If you have a painless mouth ulcer on your jawbone and not on soft tissue, see your dentist right away.

The main side effect that some experience is a flu-like reaction - especially with the first few injections.  Luckily, this usually goes away and, the great thing about prolia is, you only have to worry about it 2 X a year. I bet you will not have it as you have been on boniva!!!

Good luck and I bet you bones get a lot better!!!!

 

Thanks, CC!

Were you on Prolia?  It just seems that there are more SEs associated withProlia (opportunistic infections, flulike symptoms) and my endocrinologist has not convinced me that I need to switch from the Boniva.  I am on my second five year round of Arimidex and am wondering if modifying my synthroid  (I  have been found to be wandering in the hyper zone) and or possibly switching to Tamoxifen might alter the course of the osteoporosis.

lynn1950

Christmas Girl said:

Awww, Lynn...

Can't offer any specific response to the info you seek, hon. But, I hope you'll do well with the Prolia.

(((Big Hugs)))

Kindest regards, Susan

Hi Susan

Hope all is well with you.  Things are good out here in Idaho.  xoxoxo Lynn

 

Double Whammy

lynn1950 said:

Thanks, CC!

Were you on Prolia?  It just seems that there are more SEs associated withProlia (opportunistic infections, flulike symptoms) and my endocrinologist has not convinced me that I need to switch from the Boniva.  I am on my second five year round of Arimidex and am wondering if modifying my synthroid  (I  have been found to be wandering in the hyper zone) and or possibly switching to Tamoxifen might alter the course of the osteoporosis.

I chose NEITHER

When I started on Arimidex in 2011, my onc gave me a choice of bisphosphonates to take and told me to go away and do my research and think about it and decide at my next visit.  I was ready to do whatever she told me to do.  I was osteopenic and had been for years but she wanted to start me on a bisphosphonate because of the Arimidex.  I did my research and decided to discuss this with my pcp since afterall, she prescribes them.  When I saw my pcp and told her my story she said "not yet" because I'd been stable for a long time.  Onc agreed.  Then later, after being on Arimidex for a while, dexa showed progression especially in lumbar spine area and probably osteoporosis.  I talked to pcp again who cited recent studies about lumbar spine numbers and whether it means true osteoporosis at the level mine were or something like that, but the bottom line was again "not yet".  My oncologist agreed. 

Then I switched from Arimidex TO Tamoxifen because I had myself all worked up over the permanent hair loss thing and wanted to see if Arimidex was contributing.  I wanted to stop it altogether for a while, but oncologist said she'd be happier if I switched to tamoxifen and explained how they work differently and that Tamoxifen is actually good for your bones.  I switched.  My hair never came back anyway, but I remain on Tamoxifen.  I have also been exercising consistently (key work is consistently) 5 days a week for 8 months now.  I think I'm due for a dexascan again in a few months.  I plan on bringing this up at my next onc visit in August.  I'm anxious to see if there has been any improvement.  My Vitamin D levels are also normal now.   I'm hoping there has been improvement, or at least no progression. 

I will take a bisphosphonate if I need to.  I am old, fair, white, and small boned (very small frame, dinky actually, just with lots of padding).  I poo pooed osteoporosis until I reached my 60's but not any longer as I've seen friends and relatives with broken bones.   I do not want to break anything.  The side effects of bisphosphonates scare me, and I simply don't want to take one more drug, but I will if it's necessary.  Right now, it isn't and I'm hoping (as is my onc) that the exercise and tamoxifen will rebuild some bone loss.  If not, I think I will ask about visiting an endocrinologist for another opinion before I do anything. 

This is just my story and my decisions.  I take 3 blood pressure meds and cholesterol medications and have for 20 years.  Now Tamoxifen.  It just seems like a lot of chemicals zipping around in my body but I know they're important if I want to be here and I still want to.  I have seen side effects tho (had to stop taking a diuretic because I developed gout which raises concerns about kidneys, arimidex contributed to bone loss, and taxotere killed many hair stem cells forever) and I just don't want to do anything I don't have to for as long as I can.     

Good luck on your decision.

Suzanne

lynn1950

Double Whammy said:

I chose NEITHER

When I started on Arimidex in 2011, my onc gave me a choice of bisphosphonates to take and told me to go away and do my research and think about it and decide at my next visit.  I was ready to do whatever she told me to do.  I was osteopenic and had been for years but she wanted to start me on a bisphosphonate because of the Arimidex.  I did my research and decided to discuss this with my pcp since afterall, she prescribes them.  When I saw my pcp and told her my story she said "not yet" because I'd been stable for a long time.  Onc agreed.  Then later, after being on Arimidex for a while, dexa showed progression especially in lumbar spine area and probably osteoporosis.  I talked to pcp again who cited recent studies about lumbar spine numbers and whether it means true osteoporosis at the level mine were or something like that, but the bottom line was again "not yet".  My oncologist agreed. 

Then I switched from Arimidex TO Tamoxifen because I had myself all worked up over the permanent hair loss thing and wanted to see if Arimidex was contributing.  I wanted to stop it altogether for a while, but oncologist said she'd be happier if I switched to tamoxifen and explained how they work differently and that Tamoxifen is actually good for your bones.  I switched.  My hair never came back anyway, but I remain on Tamoxifen.  I have also been exercising consistently (key work is consistently) 5 days a week for 8 months now.  I think I'm due for a dexascan again in a few months.  I plan on bringing this up at my next onc visit in August.  I'm anxious to see if there has been any improvement.  My Vitamin D levels are also normal now.   I'm hoping there has been improvement, or at least no progression. 

I will take a bisphosphonate if I need to.  I am old, fair, white, and small boned (very small frame, dinky actually, just with lots of padding).  I poo pooed osteoporosis until I reached my 60's but not any longer as I've seen friends and relatives with broken bones.   I do not want to break anything.  The side effects of bisphosphonates scare me, and I simply don't want to take one more drug, but I will if it's necessary.  Right now, it isn't and I'm hoping (as is my onc) that the exercise and tamoxifen will rebuild some bone loss.  If not, I think I will ask about visiting an endocrinologist for another opinion before I do anything. 

This is just my story and my decisions.  I take 3 blood pressure meds and cholesterol medications and have for 20 years.  Now Tamoxifen.  It just seems like a lot of chemicals zipping around in my body but I know they're important if I want to be here and I still want to.  I have seen side effects tho (had to stop taking a diuretic because I developed gout which raises concerns about kidneys, arimidex contributed to bone loss, and taxotere killed many hair stem cells forever) and I just don't want to do anything I don't have to for as long as I can.     

Good luck on your decision.

Suzanne

Thanks, Suzanne

You share your story well. I wish you no osteoporosis!

I've read posts you've written in the past.  They are what gave me the idea for trying Tamoxifen.  I am not sure if being off the Arimidex and on Tamoxifen changes my risk for recurrence.  So that's a consideration.  I know I need to do something about the osteoporosis, just no sure what is the best course for me. xoxoxo Lynn

 

CypressCynthia

lynn1950 said:

Thanks, CC!

Were you on Prolia?  It just seems that there are more SEs associated withProlia (opportunistic infections, flulike symptoms) and my endocrinologist has not convinced me that I need to switch from the Boniva.  I am on my second five year round of Arimidex and am wondering if modifying my synthroid  (I  have been found to be wandering in the hyper zone) and or possibly switching to Tamoxifen might alter the course of the osteoporosis.

I have never been on prolia

I have never been on prolia per say, but I was on xgeva for 4 years.  They are the identical drug but prolia dose is 60 mg 2 X year and xgeva dosage is 120 mg every 4 weeks.  As you can see my dosage is much higher and much, much more frequent.  My dosage is prescribed for bone metastases.  The great news was the drug did strengthen my bones and helped eliminate most of my bone pain.  I never had the flu symptoms. 

After a total of >6 years of bisphosphonate treatment (boniva first for osteopenia with fractures, then zometa for mets and finally xgeva for mets), I did run into jaw necrosis.  It showed up as a tiny "mouth sore" at the back of my mouth, over bone not soft tissue.  It was painless (at first) and I was worried about it.  i saw my dentist and he sent a photo to my onc and an oral surgeon.  I was told that I had to stop the drug, which I absolutely hated to do because it had worked so well with my mets.  Fast forward 6 months and the hole (not really a mouth sore) is still there.  I religiously do my chlorhexidine mouth rinses 2 X day and wait.  My oral surgeon said to think in years for healing not days or months.  I see him every 2-3 months.  The thing is mostly painless, but sometimes I have pressure and pain.  I feel very blessed to have caught it early.

It may sound crazy, but I am waiting for the day this thing heals completely and I can return on the drug.  In the meantime, I have had more rib pain and I am not sure why.  My scans look good.

Like you, I have a very difficult time with my thyroid disease.  My TSH has been all over the place the past year.  My endo says this is from drugs decreasing absorption.  I now take my meds in the middle of the night when I get up to pee. 

Good luck with whatever you decide.  I hope your osteoporosis improves!!!

Double Whammy

CypressCynthia said:

I have never been on prolia

I have never been on prolia per say, but I was on xgeva for 4 years.  They are the identical drug but prolia dose is 60 mg 2 X year and xgeva dosage is 120 mg every 4 weeks.  As you can see my dosage is much higher and much, much more frequent.  My dosage is prescribed for bone metastases.  The great news was the drug did strengthen my bones and helped eliminate most of my bone pain.  I never had the flu symptoms. 

After a total of >6 years of bisphosphonate treatment (boniva first for osteopenia with fractures, then zometa for mets and finally xgeva for mets), I did run into jaw necrosis.  It showed up as a tiny "mouth sore" at the back of my mouth, over bone not soft tissue.  It was painless (at first) and I was worried about it.  i saw my dentist and he sent a photo to my onc and an oral surgeon.  I was told that I had to stop the drug, which I absolutely hated to do because it had worked so well with my mets.  Fast forward 6 months and the hole (not really a mouth sore) is still there.  I religiously do my chlorhexidine mouth rinses 2 X day and wait.  My oral surgeon said to think in years for healing not days or months.  I see him every 2-3 months.  The thing is mostly painless, but sometimes I have pressure and pain.  I feel very blessed to have caught it early.

It may sound crazy, but I am waiting for the day this thing heals completely and I can return on the drug.  In the meantime, I have had more rib pain and I am not sure why.  My scans look good.

Like you, I have a very difficult time with my thyroid disease.  My TSH has been all over the place the past year.  My endo says this is from drugs decreasing absorption.  I now take my meds in the middle of the night when I get up to pee. 

Good luck with whatever you decide.  I hope your osteoporosis improves!!!

This is what we all worry about, and should be considered and I don't know what the answer is (not my job).  Arimidex seems to be "better" for postmenopausal women, or at least that's what they say today - might change tomorrow.    The rate of distant mets within 10 years for women with my type of cancer is about 14% after chemo and 5 years of tamoxifen (this is what the oncotype dx test and my oncologist said).  Arimidex improves that number by about 15%.  For me that means my number on arimidex would be 11.9%.    We know we have either a 100% or 0% chance of recurrence on an individual basis, but population statistics absolutely mean something and the hormone therapy has decreased those recurrence rates dramatically and has saved many lives.  For me, the difference between Arimidex vs Tamoxifen is really not very much but if I were to have a recurrence, believe me, I would wonder about switching to tamoxifen.  Tamoxifen's big side effects are uterine cancer (had that, no uterus, don't have to worry about getting that again) and blood clots/strokes.  So what's worse in terms of possible side effects?  I don't know.  Something we have to discuss with our docs.  Afterall, they love to spout statistics. . .

 

lynn1950

Bye Bye Boniva

I had my first Prolia shot last Thursday and it stung!  But I am OK.  The deal clincher was that my endocrinologist said that it is an effective deterrent for bone mets.