Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Prolia Shots for Increasing Osteopenia

1568101119

Comments

  • minustwo
    minustwo Member Posts: 13,398

    My dentist, my periodontist and my endodontist are all comfortable doing cleanings, regular fillings, crowns & even root canals while I'm on Prolia. I am not a doctor, but from what I understand, the major risk is from exposed bone due to extraction. My docs have specified waiting 6+ months after the last Prolia shot before an extraction - and waiting 3 more months before starting Prolia again. This of course does not allow for emergency extractions. I had all possible dental work done before I started Prolia and I have my fingers crossed.

    I had my 4th Prolia shot sub-Q in my belly five days ago. Fortunately again I have not had any side effects. Since the bone increase I have gained will fall off rapidly after cessation, I will continue for 5 years if I don't have to stop for dental issues - then take a 'drug holiday' for a year before starting again. This is the current recommendation of both my MO and my GYN. That said, my GYN says the ongoing research is only 8 years out so of course lots more to know.

    Prolia & Xgeva are the same drug (denosumab) but dosage is different. The first is used for osteoporosis or osteopenia once every six months and the second is used for bone mets every 4 weeks.

    http://www.breastcancer.org/tips/bone_health/keep_...



  • jazzygirl
    jazzygirl Member Posts: 11,987

    B123- Yes, I think it would be in my system and that is the concern for an emergency procedure. As we know, that is not uncommon with dental issues too! My only real mitigation plan with my dentist is to go to the oral surgeon. Because despite the risk, they seem to know what to do to help minimize the chance. They have patients on the denusaub for bone mets that cannot go off it as it is primary cancer treatment. You may need your dentist to refer you to someone with expertise around treating patients on this drug?

    I will do the next shot this summer and then may talk further to my PCP about how long I should continue during my summer physical. My endocrin said get one in Jan and July to be sure I am covered as I come off the AIs. There will be residual in my system a few months after I come off per the visit to the MO's offic on Friday. So I am good with doing the one this summer. I have no idea how long any of these drugs stay but figure it is awhile given you are on them for years? Both the AIs and the Prolia shots.....

    After this summer, the Prolia won't be related to my cancer treatment due to AIs, but just a baseline issue with being me starting as osteopenic. My PCP is on top of osteopenic issues and will be good to consult with on this longer term recommendation. If my bone health improves and is only slightly impaired, I may be able to come off the shots. Several women on these threads who loss bone mass on the AIs said it came back after they went off.

    I did my last bone density end of 2017 and will ask my PCP again if we can retest sooner than 2 years. I never liked that insurance only pays for this every couple years, but the cost out of pocket is not that much. I may spring for an extra one if insurance is a stickler!


  • minustwo
    minustwo Member Posts: 13,398

    Jazzy - my insurance did pay for an extra DEXA scan at one year to review damage from 'cancer' drugs. I know my GYN had to code it differently.

  • jazzygirl
    jazzygirl Member Posts: 11,987

    MinusTwo- I pushed for one last time to be sure the Prolia was working and did get it paid for too, although I was ready to pay. Insurance is getting tighter about stuff though.

    Thanks for the heads up on the coding, will talk to my PCP about this as she orders the scans for me.

  • B123
    B123 Member Posts: 239

    Jazzygirl that makes sense! I may call my MO tomorrow and talk about it a bit more.so happy to hear it’s working well for you. So your bone density has improved? Can I also ask you a personal question?? Do you have breast reconstruction? If so do you need antibiotics each time you have work at dentist? I’m sorry if I’m over stepping.. thank you


  • jazzygirl
    jazzygirl Member Posts: 11,987

    B123- I did not have a mastectomy, I had bilateral bc, IDC on the left, DCIS on the right and a double lumpectomy plus internal radiation on both sides.

    I was a complicated case at the time due to a ruptured appendix at the time of my diagnosis (that is right, my appendix burst and I got diagnosed with bc all in the same week). I could not handle a BMX due to the bigger abdominal surgery so that is why I had what I did. No infections and no anti-Bs required ever with my dentist unless I had a known infection (prior to BC).

  • B123
    B123 Member Posts: 239

    Oh geez that is tuff! Way more anyone should have to endure in a life time never mind one week!? I’m glad your doing well now and sounds like you have a great support team. I am going to try to figure all this out this week. I am really unsure about evista but taking Prolia shots may not be so bad. Thanks so muc

  • minustwo
    minustwo Member Posts: 13,398

    B123 - I had a BMX originally for DCIS. Then I had a recurrence that was IDC with two different kinds of chemo & more surgery & radiation. I am hormone negative, but the chemo drugs themselves tanked my bones from normal to osteoporosis.

    I don't think most dentist do antibiotics unless you had something like Rheumatic Fever in your past.

  • B123
    B123 Member Posts: 239

    MinusTwo, I thought that if you have implants that you need antibiotics for dental work? I really am not to sure? It is possible I was told that at the beginning only

  • minustwo
    minustwo Member Posts: 13,398

    B123 - I've had my implants since 2011 and no one has ever said anything about this. I only know about antibiotics for previous rheumatic fever because my BFF had to do that. Currently "dr google" says that it is controversial - and we all know to take any google info with a grain of salt. I didn't see any new or current medical research to support this. There is an old BCO site that actually discusses this topic.

    https://community.breastcancer.org/forum/120/topic...


  • specialk
    specialk Member Posts: 9,262

    B123 - I think those with mitral valve prolapse also need prophylactic antibiotics before dental treatment, and I know there are a few plastic surgeons out there who ask their breast cancer patients with implants to do this, but it is not the norm.

    minus - what is the rationale for the break after five years? I am curious because I am due for an injection in March and this will be the start of year six. My MO has said as long as I am on anti-hormonals I will be on Prolia, but I need to ask him about what the plan is when I am done with letrozole. I have had the largest percentage of gain of density of any patient he has, and I really don't want to lose that but question staying on this drug too long.

  • jazzygirl
    jazzygirl Member Posts: 11,987

    Special K- I had originally been told by my MO that the maximum benefit on Prolia was about 3 years. So I was surprised to hear they thought I should continue on with this longer term? That being said, I have only agreed at this time to do the next shot in July on the other side of coming off the AIs in March. The research does change all the time, but if the benefit is not there, I won't want to continue after 2018. I plan to keep revisiting this every visit with them and my PCP.

  • specialk
    specialk Member Posts: 9,262

    jazzy - I have an MO appt in March and will ask some questions then - I have had DEXA scans that show continued benefit through the six years, and I was osteopenic and mostly untreated prior to breast cancer, tried oral bisphosphonates but could not tolerate them due to a surgery in 1995 to re-create a new junction of stomach and esophagus. I fit the physical profile for osteoporosis and had an early hysterectomy/oophorectomy for uterine fibroids and a pre-malignant ovarian mass, so I had stable osteopenia, but chemo and the first six months of letrozole pushed me to osteoporosis and my MO started me on Prolia in 2012. I will let you know what my MO says too.

  • jazzygirl
    jazzygirl Member Posts: 11,987

    Thanks Special K. I know my doctors are on top of it for me given the family history, etc. I had a hysterectomy with my ruptured appendix the same time as the whole bc thing in 2012, and they tested me again in 2013 before I started the AIs and was on the way down anyways. Then after 15 months on the AIs and a new bone scan, and we decided it was time for Prolia. So lots of factors, and will stay on it as best I can if it makes sense. I welcome any input your MO shares with you and wish you a good check up in March!

    My hope is that my bone health will improve on it's own along with the Prolia this year.

  • B123
    B123 Member Posts: 239

    specialK and MinusTwo, I was told by my PS when I had the surgery 6 years ago. So it’s always been in back of my head. I know people with artificial joints need to take antibiotics. I forgot about mitral valve as well. But when I think about how many people out here who had them done for cosmetics only, maybe it’s not necessary. I did ask my dentist regarding dental work and Prolia shots, he said it has never been a problem. So a bit relieved. Maybe I will go back to Arimidex and go Prolia rather then evista. I’m so tired of life on the edge.

    Thank you ladies

  • minustwo
    minustwo Member Posts: 13,398

    Special - I'm hormone negative so I'm not on Als. Maybe that's an issue - no ongoing cause? I had osteopenia before the BC diagnosis that I successfully brought back up to normal over a period of 4 years by quitting smoking, quitting cokes and walking 5 miles every single day for weight bearing. After chemo, I was thrown into full osteoporosis.

    As my GYN said, they don't have 10 years of data yet on Prolia, but she still agreed with my MO. She said they do have firm data that biosphosphonates for a lengthy time definitely increases the fracture risk and they no longer prescribe very often for osteopenia for an otherwise well person.

    I'm not sure the reason for the 'drug holiday'. Maybe just to get dental work done? Or check how far the numbers on the DEXA scan drop? But I tend to watch the ongoing research and will certainly be interested in what the docs tell you & Jazzy.

  • eastcoastts
    eastcoastts Member Posts: 352

    Hey, guys:

    Ugh -- My insurance (aetna) denied Prolia. Pretty much saying I have never tried another med and do not have a condition which makes the others unsafe. Which is true. I guess. I can't really complain because insurance was great for me last year during surgeries, etc. Have never had anything denied, so not sure what I can do to change this. (My Endo is very high on Prolia so will ask her, too.)

    What is the bisphosphonate that is also good for bone metastasis? (If I'm going to do these -- I may as well get that added benefit, right?)

    FYI: I was flagged with osteoporosis at latest DEXA. Not a surprise as I had osteopenia prior.

    THANKS! Any advice welcome.

  • jazzygirl
    jazzygirl Member Posts: 11,987

    Eastcoast- my MO told me when we started that sometimes insurers want you to start on other bone health drugs like Fosomax, etc. before they will let you do Prolia. Mine was approved from the get go, but know many get denied. My MO has said that Prolia is by far the bone builder for cancer patients, including those who are loosing bone mass on the hormone suppression.

    You can appeal the denial, and maybe leverage your MO and endocrin to help you with this. Sounds like they really want you to do this drug too. There is paperwork to do the appeal, but they can also provide letters to support why Prolia is best for you?

    Prolia is a lower concentrate of the drug denusaub. They actually use denusaub via infusion to treat bone mets. There are some limited studies about the fact Prolia shots for bone health may help to reduce reoccurrence. Here is an article from BCO from around 2015.

    http://www.breastcancer.org/research-news/prolia-r...

    You are on tamoxifen vs. the aromotase inhibitors and not sure if they do the same things to the bones, but good to ask. Another BCO sister I know who does Tamoxifen and she gets Zometa shots for her bone health situation. I really don't know anything about it, but you may want to look in to this, check out to see if there is a Zometa thread here?

    http://www.breastcancer.org/research-news/20111210

    Hope this helps and that you can get something figured out here to help your bones as you continue on your drug protocol.

  • minustwo
    minustwo Member Posts: 13,398

    EastCoast - I would appeal. If it was the cancer treatments that threw you into osteoperosis, I'd get letters from the MO and your GYN. It also depends on how they code orders. If it's just for plain, old, everyday, getting older, menopause osteoperosis, I imagine they want to do cheaper things first. If it's to correct something cancer related, it's usually a different story.

  • eastcoastts
    eastcoastts Member Posts: 352

    Thanks, Jazzy! REALLY helpful.

    I appreciate the info!

  • eastcoastts
    eastcoastts Member Posts: 352

    And MinusTwo!


  • specialk
    specialk Member Posts: 9,262

    eastcoast - I am not sure if there is any bisphosphonate is better than the others, but they come in varying methods - once a day/week/month pill (different brands - Fosamax, Actonel, Boniva, different dosing), or IV Reclast, which I believe is an infusion every six months. If you are prone to heartburn, or have reflux, the oral meds can be problematic. Reclast is easier but can cause flu-like symptoms for several days. Bisphosphanates work by a different mechanism than Prolia but have also been shown to be of benefit for breast cancer patients because strengthened bone is a less hospitable environment for mets. Tamoxifen has been shown to strengthen bone in post-menopausal patients, but not for those who are pre-meno - sorry, can't remember which you are, but if post-meno and on Tamoxifen you may get some benefit from that alone. If pre-meno and on Tamoxifen it may also be why Prolia was denied, as it is intended for post-meno women.

  • eastcoastts
    eastcoastts Member Posts: 352

    Thanks, SpecialK!

    I'm pre-M and my osteoporosis is not related to BC treatment. (So perhaps that is the reason for the denial as you said. I never thought of pre-M being an issue.) I reached out to my Endo and we'll see what she says. Ugh. Another med to figure out! I had done all my research on Prolia because my Endo was so high on it. I never thought about getting denied. Damn insurance.

    I just know I cannot give myself a shot every day, something my mom (also has osteoporosis) did, I think. LOL

    Glad to hear that others are good as well for protection from bone mets. If I have to take something...I may as well be getting that benefit. I'll appeal if it looks like I have a valid argument.


  • jazzygirl
    jazzygirl Member Posts: 11,987

    EastCoast- I have a friend who has a long history of osteoporosis (unrelated to anything with BC and hormone suppression drugs). She had some stress fractures develop in the past few years and had to go back on Forteo for awhile and just moved to Prolia. I think those Forteo shots were daily. I have done some diabetic shots daily with Victoza and now doing weekly with Trulicity and totally hear what you are saying about having to do anything daily with shots.

    So that could be another path for you to start with a different drug, then move to Prolia. Go for the appeal process and see what happens (I have had to do it and it does work if you push on it with the help of your docs). Then if they won't go for it, maybe your providers can create a plan to get you to Prolia with time?

  • veeder14
    veeder14 Member Posts: 274

    Hi EastCoast

    I was on Forteo before and the shots are easy, nothing to it. It's a pen with a dinky needle and you just have to put it under the skin. You would be able to do it. The hassle I had was when I wanted to travel. If it was just for a day I would skip the shot, if I was on a longer vacation I would take an ice chest (on the plane or in the car) so I could do my shots. The Forteo really worked and grew bone in the 2 years I used it.

  • eastcoastts
    eastcoastts Member Posts: 352

    Thanks for all the feedback, everyone. I really appreciate it.

    Okay, ass-backwards (excuse my French) but the doctor is going to submit some kind of pre-authorization for Prolia that involves more documentation to insurance. Think they'd do first but I guess -- from time-spent standpoint -- why do this if the request is approved by insurance on the first go-round?

    However, I read a little more and will be fine with another (Forteo, etc.) and move up to Prolia when I can.

    Veeder: I about croaked when I had to give my cat shots recently. Ha ha! I can do it if I have to. I'm sure it's not that bad. But yuck. Another fun thing to look forward to! I'm about off the cancer treatment train (well except for Tamox) and now entering osteoporosis land. Geez.

    Will let you know what happens! ;)

  • muska
    muska Member Posts: 224

    Hi EastcoastTS, my recommendation is to let your doctor's office drive the process and pick the right drug for you.

    With regards to Prolia, it is now routinely approved by all major insurers if patient is on an AI drug but they do require pre-authorization be submitted by medical provider. Your case is slightly different because you are not on AI but I think your medical provider might still make a good case for Prolia based on your medical history that includes osteoporosis.

    Let us know what you eventually get.

  • jazzygirl
    jazzygirl Member Posts: 11,987

    Eastcoast- good luck and let us know how it turns out for you? I am glad you are done with the hard stuff and now it is about keeping that drug protocol going (and finished) and keeping your bones healthy. I was always osteopenic with this, slightly as I went in, more so after the drugs, but with full on osteoporosis, you should be able to get what you need.

    Keep us posted!

  • muska
    muska Member Posts: 224

    I had my DEXA scan last week. My bone density has improved significantly since I started Prolia in Feb 2016 and is now better than when I had my first baseline DEXA in 2014 (that was before I started anastrozole.) I don't have osteopenia any longer. My MO advised my however, to continue staying on Prolia for two more years - primarily because of very promising research showing its protective benefit against bone mets. She said the results reported at San Antonio were impressive.

  • jazzygirl
    jazzygirl Member Posts: 11,987

    Muska- that is great news about your bone health. Mine improved on it too but I am still osteopenic. I came off the AIs end of February so my bone health should improve with time. I have another shot this summer and then will see what happens after that. My doctor's office thought I should stay on it longer, but not sure insurance will pay. We will discuss more as time goes on. My next shot is in a couple months.

    Interesting discussion today with a friend about Prolia costs. She is on it for severe osteoporosis (not a cancer survivor, but has done all the other drugs and moved to Prolia as the next course of treatment in the last year). She told me Medicare was billed $5700 for her last shot. I know my MO bills $2000 to my private insurance and they get paid some portion of that.