Prolia Shots for Increasing Osteopenia
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Since starting Anastrozole I have gotten osteopinia in my hip/neck. Saw the endocrinologist, he said I could go on meds. I said I didn't want to take any more drugs, but I'd like another dexa scan next year when my insurance only offers it every 2 years. He said if I were on the meds he could ask for it, but not being on them it would most likely be denied.
Has anyone paid out of pocket for a dexa scan? If in May 2020 it shows worse than this year, I'd probably throw in the towel and take some med. Prolia I've been told helps avoid bone mets as well.
I work out hard 3-5 days a week; take Citracal, D, C, fish oil, magnesium, multi vitamin; eat lots of yogurt. So the Dr didn't have a plan for me to increase any activity, just more meds.
Thank you for your input.
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jessie123 then that's good news for me! Fosamax wasn't a good choice for me, given that I've had that one break already. Also I'm a snowflake when it comes to gut upset from oral meds so that made the Foxamax less attractive to me.
Here's hoping you don't need any of them.
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cindy - the World Health Organization is the one who has set the every two year scan regimen, and most insurance follows that guideline. I have a friend who was denied, she needed a DEXA to check for bone disease which was not cancer related, but potentially related to elevated liver enzymes. She paid out of pocket and it was $125. If you have already had a DEXA done it is a good idea to have subsequent ones done at the same location on the same machine, if possible. Calibration differences can slightly skew results.
Prolia definitely built bone for me, I had a 29% recovery, and was an exceptional responder. The DEXA I had after 6 years on Prolia, a year after stopping it, showed no decline. I was osteopenic going into chemo and AI drugs due to an early hysterectomy/oopherectomy, chemo and 6 months of letrozole worsened density after six months, so I started Prolia at that time.
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Hi friends- let me clarify about the bone loss and improvement cycle I went through. I had seen some improvement at one point on the Prolia shots when I first started them. The numbers were better between the time I started and a year or so later with the first dexa scan. Then things stabilized and have not changed much since. That has been a few years now.
I have paid for at least one dexa out of pocket. I think it ran around $100 but it may vary by location, and individual provider discounts when paying yourself. You can ask how much for a scan and have them self bill you.
My biggest gripe at this point is not being able to get in to the MO's office in a timely way to get my shots anymore because of them. I had a shot scheduled with my MO visit in January, and then they pushed out the apt six weeks because of schedules. I got called before this last scheduled one and could tell they had not bothered to get the insurance approvals and were scrambling. I told the woman who called me if they could not see me on the day scheduled, it would be awhile as I was having cataract surgery the following week and would not make any apts until I was through that surgery and more stabilized. I just rescheduled this week now that I am two weeks out on that surgery and okay, and it will be another delay of five weeks as a result. I plan to talk to my MO when I see him next in 2020 and would like to hand this over to my PCP to manage going forward and also plan to talk to her about it next week. Frustrating!
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Jazzygirl, my MO referred me to an endocrinologist for evaluation b/c of the broken pelvis and osteopenia dx. The endocrinologist is the one who dx'd me with osteoporosis, ran a bunch of tests to rule out various causes and is also who prescribed and gave me the Prolia shot (well the nurse did).
Is that an option for you?
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Jazzy - I chose to start the shots with my OB/Gyn instead of my MO. That's who originally ordered DEXA scans for me & had been tracking my bones before cancer. I get one at my yearly physical after I see the doc. The second is 6 months later from the nurse & I don't even have to see the doc. Maybe that will work for you.
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Hi ladies- I had a great endocrinologist for awhile. She helped me with many things, including my weight gain on the AIs and with my diabetes, but left the medical group where I was seeing her for concierge medicine. I may talk to my PCP about finding another one. I pay for my own policy through my consulting work and just can't afford to do concierge medicine too, although I like the concept. Thanks for that suggestion!
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jazzygirl - can your PCP give the injection since you already have a history of getting them and a documented need? I was fortunate that my oncologist's office has a separate “injection" room where Prolia, Neulasta, Neupogen, and other similar drugs are given. I didn't need to see my MO for Prolia, and the office handled all of the insurance billing. Prior to designating the dedicated injection room, I received my Prolia injections in the chemo infusion room, but still had no need to see the MO - just reported for the injection at the appointed time.
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Thanks ladies! I feel better knowing I can get a dexa scan without taking out a loan.
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Jazzy - I left my PCP because of his choice to convert to Concierge medicine. Hope you can finagle someone other than the MO. It always takes so long to get in to see them & they do push us out since we're not in active treatment. (hmmm - in no danger?? maybe a little cynical??)
BTW - love the balloons. Hope you're having fun.
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I will ask my PCP if they can do the injection in their office, and see if I can move it to her going forward.
MinusTwo- in the past couple years, my delays with getting annual cancer follow up care are very much delayed. I got totally blind sighted this year after my annual mammo and MRI and a delay with seeing my BS as a follow up. I got a letter saying all was good on the imaging front, and then when I got in to the office, it was mentioned I needed an ultrasound. That baffled me as MRI is what they have moved to from US in the past couple years, but know MRI is not an ideal bc screening tool. That being said, one of my masses was found that way.
Turns out they caught some masses on my thyroid in the MRI and said they needed to be checked. Here I was preparing for cataract surgery, thinking I was past my summer follow up and okay, and BAM! So I had an ultrasound that then lead to a biopsy and this was all getting dragged into my same time as preparing for surgery. The good news is the nodules were benign, but good lord, what a nightmare. I involved my PCP in the thyroid thing as the BS office (recently sold, need I say more) were totally dropping the ball on it. From the time the thyroid thing was found to the results, it was months to get any answers. I did not want to get up to surgery date and have to cancel because oh, I might have something to do with the thyroid first? My thought was a thyroid cancer would trump eye surgery?
I feel sometimes in the post cancer world, we are either being pushed off or they are overreacting to everything, hard to find a good medium. I have had to learn not to panic every time someone wants another scan or biopsy. I have them all the time now. Off my soapbox now, thanks for e listening.
Balloons, we got em!
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I hear ya about post cancer and protocol. I'm am coming up on year 2 and I believe suppose to see BS and MO every 6 months still. Problem is when my whole thing started I had a DEXA, lung scan, mammo all done at the same time as ordered from GP on a regular check up. Now, the BS orders the breast imaging, and the MO does mostly everything else. I saw the BS in June and I have 2 orders, one for mammo and another MRI (I got a BIrads 3 last time). Saw the MO this week and she orders the DEXA and lung scan and orders me back right after the results. If my DEXA score is worse I might be getting my 1st Prolia shot in Dec. when I return. This is our 3rd try. First they said, oh wait, go to dentist first, then my insurance company denied the claim, so maybe 3rd time is the charm? Meanwhile, with GP lab order we've eliminated having parathyroid disease causing my osteoporosis.
So, I made my own executive decision and scheduled the DEXA and the lung. It was either bone health or breast health and the bones won. They are my priority right now. If my BS gets pissed off I'm screwing up the schedule and overdue, oh well. When I'm done with this bone thing, THEN I'll schedule the mammo and MRI of breasts and a return BS visit. All depends too on what MO says in Dec.. Besides the fact of having too many insurance claims at one time. It just seems ridiculous and off.
I almost wrote back in the survey they send out after a visit that they really could start having virtual appointments with their patients. I do like my MO, but she spent at least 1/2 of our appt. on the computer, doing what I just don't know. This goes on at my GP's office as well. Their saving grace is that they do manage to make eye contact and say, "sorry" Good grief.
Best wishes to Jazzy and everyone!
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From ASCO September 2019
Management of Osteoporosis in Survivors of Adult Cancers With Nonmetastatic Disease: ASCO Clinical Practice Guideline
https://ascopubs.org/doi/full/10.1200/JCO.19.01696
guidelines for screening and treatment
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Has anyone had dental work while on Prolia? I broke A crown tonight and left with a jagged edge. In a panic because of risks with dental surgery. Help!
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butterfly - you’re prob ok because the invasive part of the work was done when the crown was originally put on and what you need done now is a new cosmetic external part. Bummer though! I am just finishing having an extraction, bone graft, and implant done and had no problems, had to stop both Prolia and Letrozole to do it though
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I just had a bone density scan my last one was in 2014. I probably have Osteopenia or Osteoporosis after taking AI drugs, my doctor's office left a message to call them they have the results. Probably not normal, normal results usually come in the mail.
Researching possible treatment options. I have to wait till Monday to hear, ugh.
I must say my joint pain is almost totally gone.
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Thank you SpecialK
I spoke with a family friend who is a dentist and he said this shouldn’t be a problem.
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I had crowns and a root canal done while on Prolia without any issues.
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I had to start Prolia after a DEXA showed my osteopenia had gotten worse after being on AI for many years and llabs showed they were zapping my bones. I had to be on it for 2 years.
Before I started Prolia though.I had to go get dental work done. The dentist said I would end up losing my teeth in 2 years of being on it. My step mother had been on Prolia and no one had suggested she get checked out first and lost all of her teelh. She had been on Prolia 5 or 6 years before it happened. I did not have great teeth to start with and already had osteopenia. I had to get full dentures before I had even turned 57 years old. Sad..........
Each shot had to be per-approved by insurance. She finally after being on meds for 9 years let me off early and said I could now stop Prolia. I still have no teeth.
I think your overall dental heath makes a big difference. Everytime I went for a shot I was asked if I had any jaw pain too by the way. I think some of the other options have worse side effects than Prolia though.
It is better than breaking a hip though!!!!
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My bone density turned out to normal, not sure why they called instead sent the results in the mail but I am happy. I don't think it is acceptable to trade one problem for another, better BC treatment is needed.
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Thank you. My crown is hurting and I’m thinking I may need a root canal. Did you schedule your dental procedures around your Prolia injections?
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My dentist recommended waiting 6 months after getting my regular Prolia shot and not starting back with the next shot for another 3-6 month after invasive dental work (like extractions). Actually it was my periodontist that checked all the latest, current research and discussed the situation knowledgeably.
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Thank you for the information. Much appreciated. I’m due for my next injection in January.
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Butterfly, I had a dental emergency last winter that required an urgent root canal. Everything was fine. It is my understanding extractions and surgeries involving bone should be avoided while on Prolia, everything else should not pose any problems.
I am having my last Prolia in February (will be full four years on it.) My MO recently let me know they now do an injection of a 'regular' bisphosphonate (don't recall which one exactly) about six months after the last Prolia to avoid accelerated bone loss after one stops Prolia cold turkey.
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muska - likely Reclast, the once a year infusion.
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SpecialK, you are probably right as usual
She did mention it would be just one injection and then we will see what my bone density is like two years later and if significant decline is noted in the absence of Prolia, she will likely switch me from arimidex to tamoxifen. Ideally, she wants me on arimidex for at least ten years, maybe more. That is her plan as of today, of course it can change as more information from long term studies becomes available. Obviously, it assumes no progression in the meantime.
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muska,
Thank you for the information. Much appreciated!
Happy holidays all!
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I just had my 3rd prolia injection today. At this point my dr is saying to stay on it for at least 5 years and she's hoping that by that time there might be more information and data coming in about long term use but at this point she's thinking it's possible I'd stay on it for the rest of my life.
But who knows, maybe there are going to be some new treatments coming down the line0 -
I will have my 8th Prolia injection in February - so that will conclude 4 years. My MO & Gyn agree that I should continue for 5 years and then maybe take a break before starting again.
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My oncologist told me only 2 - 3 years on Prolia. DEXA scan after 2 years, Interesting how there is no uniformity in treatment recommendations from oncologist to oncologist!
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