Prolia Shots for Increasing Osteopenia
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For those who might be interested this is the study from the past year cinched it for me to continue with at least one more Prolia injection even though I have finished Arimidex.
https://www.amgen.ca/english/media/prolia_newdata_press_release.html
Marian as for the timing of the shot next year there is a 30 day window on either side of the due date that you can use without impacting the continuance of the drug benefit. Are you going to join Provital the patient support group? If you have any concerns you can call and speak with the doctor about this.
As for the side effects after the injection, much much easier than this years flu shot IMO.
Kathy
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Kathy: Thanks for the link.
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I am on Arimedix X 4 years went in osteopenia but now have osteoporosis in low back. Mu MO says to stop taking Arimedex and take Evista to build bones up and still protect. Or start with reclast or prolia and continue with arimidex. I don't know what to do and if Evista is good/safe to take. Any one have experience or
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B123- I have not heard anyone here taking that but you may want to see if there is an Evista thread. If you decide to continue on Arimidex, the Prolia shots are very do-able and have good outcomes with bone health. I have had three so far and scheduled for another end of next month. My MO told me out of the gate he would watch my bone density and would get pro-active if there was too much loss. I am three plus years into it and we started the shots about 18 months into it.
Also, he switched me to the Aromsin generic last visit because he said it was not as hard on the bones. Has your doctor indicated if you will go beyond the five years? That can impact what course of treatment you choose.
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I believe that Evista and Prolia are the same basic drug - just that Evista is MANY times stronger. And maybe infusion only? But I'm not sure. My MO originally recommended Evista for me. My OB/Gyn feels that Prolia shots every 6 months will be sufficient. My first shot has been delayed until after needed dental work, but I should have that in July.
B123 - hopefully someone else will have more knowledge.
Jazzy - glad to hear that you haven't had any problems. I'm ER/PR negative so the chemo itself is what bumped me into full osteoporosis.
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thank you both, it's so confusing.. I think the generic is raloxofin? Ok so maybe I will go to an endo for prolia shots... Glad it's working for you.. They build up bone again?
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B123- I am not totally sure how Prolia works, but can tell you my spinal numbers were almost back to where we were when I started and femurs coming up too. My femurs were the areas that were of worst impact, and as my mother had osteoporosis and ended up with a broken hip, I knew where that could go and told my MO I wanted to try the Prolia shot or I would need to quit the drugs. To me a broken hip is not a good outcome while reducing your cancer risk?
One thing he said is that it is more easily approved for cancer patients vs. others who want to try it. I have a friend with ongoing osteoporosis issues and she has tried most everything, and wants to do Prolia but has to do something else first before her insurance will approve it. Be sure to find out if your insurance will cover the shots or not. Mine got approved fairly quickly.
Prolia shots are twice a year and can make you feel achey/flu-ish the first few days. I always get mine on a Friday, so I have the weekend to deal with not feeling as great. You won't feel anything until the next day, and the first two days after I noticed the achiness the most but it also does not stop me from doing things. By the third day, it is on it's way out. I just try to not overdue on those weekends after my shot. The last time I had a shot, I was doing a yoga retreat over the weekend and it helped me actually to cope with the joint aches. My next shot is coming up end of July.
I have been told the drug name for Prolia is called denusaub, and my MO says they use the fuller infusion type to manage bone cancers/mets. I also have read some things that there are some early studies that Prolia may help to keep re-occurence down, but my MO said not enough clinical history yet to know. Just something that could also help us.
Hope this helps and wishing you the best with the shot if you try it!
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jazzy girl, this is so great! Thank you for sharing and letting me know, great and so helpful info!! I feel it in my femurs so I'm worried about that too. Are you on arimidex as well? Who gives you the shot, endocrinologist? And do you have to take the shots as long as we take the medicine??
Thanks so so much!!! Very glad that it's helped you!!
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B123- my MO's office/cancer center gives me the shots. The can do it in your arm or stomach. I choose the former, and it is an easy shot. My MO changed me from arimidex to aromosin the last visit, so I am on still on the AIs, and scheduled to do the five years through March of 2018.
We are doing a genetics test called the Breast Index Test to see if it would benefit me to go longer than that, some women are being told to do 10 years. My cancer was early, slow growing, but this breast index test supposedly give the risk of benefits to risks for doing longer than the 5 years. We discussed it during my January visit, although I have not seen any approvals or EOBs coming through that it was done. So I will be asking again in July about this and we will discuss if I will go longer than 5 years.
http://www.answersbeyond5.com/
My MO said that the Prolia shots would likely only be paid for while doing the AIs.
I have seen women on the AI threads who said their bone health was deteriorating on the AIs, but it went back to normal after they stopped. That may depend on whether you are prone to the osteo stuff or not. I was very slightly osteopenic going into it, but again, my mother had osteo so the family risk there.
Glad this is helpful to you. Information is power when trying to make these decisions about our care and longer term risks.
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Evista (raloxifene) is a SERM and an oral med, like Tamoxifen - it is antiestrogenic in some tissues but estrogenic in bone and can stregthen it. Prolia is related to Xgeva, both are denosumab - a monoclonal antibody, but Xgeva is the larger dose form given for bone mets and bone cancers. Prolia is a subcutaneous injection every six months. Prolia works by slowing down the old bone removal rate so that the new bone creation rate can catch up. This is a different mechanism than bisphosphanates, which cost the bone to stregthen it.
I receive Prolia from my MO, and it reversed my bone loss on Femara and Arimidex from the brink of osteoporosis back to a normal measurement on DEXA. It took almost two years of injections before that reversal happened though, and that is the norm. I have zero side effects and because I was osteopenic prior to diagnosis my MO feels that I will probably need to continue Prolia after I stop anti-hormonals. I also have disk and bone spur issues from the lumbar to the thoracic spine.
Jazzy - the BCI test is a two pronged result (both prognostic and predictive) that comes from a genetic assay done on your original tumor sample. The test indicates both your risk going forward and the level of benefit of continuing antihormonal drugs. It is important to note that Biotheranostics, the company that performs the BCI, asserts that a very small percentage of women will derive benefit beyond five years - 6% or less
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B123 - I was on Evista at the time of my diagnosis. My gyn put me on it for the bone protection (osteopenia then for several years) and the BC protection. I had no objection to it and still wouldn't pre-BC but don't much trust the BC protection. Unless and this is IMHO it somehow mitigated a worse BC outcome for me.
Awaiting MO appt in late July to discuss my osteopenia. Had bone density in April. I will get preview of results from my gyn appt. later this month but it is my MO who is treating it. MO and I have discussed Prolia last 2 years but I may be ready to switch off Fosamax. The GERD is beginning to get to me and I've had to switch back to omeprazole which I really do not want to take (happier on zantac but insides weren't lol). Lots will depend on what cost is - he says insurance pre-approved it but that could be with a whopper co-pay. Fosamax + omeprazole is about $20/month. But much of this Prolia decision depends on whether I continue with Femara after my 1st 5 years are up next spring. Will spring the BCI test discussion on him but my MO is great for hedging discussions esp. knowing I still have at least one more year to do.
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Denosumab is the actual stuff of Prolia/Xgeva which are both given subcutaneously although Xgeva is a double dose of Prolia given every 1-3 months for bone mets.
Aredia/Zometa are a bisphosphonate - Aredia given twice a year for osteopenia/osteoporosis is a lesser dose than Zometa given monthly for bone mets. Both Aredia/Zometa are infused into a vein.
Xgeva has a slight advantage over Zometa for bone mets and is easier to take since it is just a subcutaneous shot.
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luvmygoats, this is a little off topic, but look up rebound for both omeprazole (Prilosec) and ranitidine (Zantac). These drugs can really affect your digestive system over the long term because acid is needed not only for digestion but to keep the balance in your gut healthy. They can even interfere with some meds.
I refused Prilosec but was on Zantac for a long time, like a couple of years. I knew it wasn't good for me and wanted to get off but every time I skipped a day, the GERD was horrendous. Then I read about rebound. When you go off these meds, your tummy overproduces acid, because that is the long term response to these meds. In other words, their presence in the system causes the body to compensate by producing more acid.
Then when you stop you are left with a higher level of acid than when you first took the meds. It is horrible.
You have to keep going for two weeks before relief. I cut Zantac in half, for a week, then 1/4 pill for a week, then off and just stuck with it. I have far less GERD now than when I first started Zantac but the worst GERD was when I was getting off.
In other words, these meds create worse GERD!! Creating the apparent need to continue...
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cive - thanks for clarifying that Xgeva is also an injection rather than infusion
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luvmygoats, thank you for sharing that. So What Inam understanding, which I kind of knew I guess, is that Evista is good for protection against BC before it happens but not so much for after. That's a bit scary to me. So if you don't me asking, why were you on evista? And what do you take now? Was the fosomax hard to deal with
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specialK, that is great news for you! From what I hear Prolia works well over time. Hopefully with no SE. Do you still take arimidex? Evista worries me for non protection of reacurrance and also of blood clots.
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B123 - I was on the Evista mostly for my osteopenia and minorly for the BC protection it was reputed to have. I had been menopausal for several years and gyn thought bone protection was a good thing. I asked both gyn and BS what they thought of Evista in light of my BC diag. and didn't get much comment. The Fosamax itself has not been hard to deal with except for the GERD. I have decent teeth and hopefully no major dental work anytime soon so not worried about ONJ. I am one who wants my tea or coffee 1st thing and with the Fosamax you have to wait 30 minutes upon arising b4 eating/drinking anything but water. I currently take Femara for BC for at least another year. Fingers crossed after that. I'm 63 now with the typical Femara shuffle.
Thanks windingshores. Not sure I could give up either right now. And I'm not giving up my tea/coffee. BC has taken enough already. My PCP says he's OK with PPI longterm, I'm not so hot on that. A PPI in itself is hard on bones. I had managed for about 2 years on zantac in place of omeprazole. Vicious cycle - Femara eats down bones, Fosamax "repairs" bones, Fosamax ->GERD, PPI eats down bones.
I think Evista is not known for blood clots but I had no risk factors. But I'm no medical expert
I think I took it for at least 3 years maybe more.0 -
luvmygoats, I see... Ok that makes sense to me. Well, that explains why I don't really hear much about it. I think my only option here is to stick with Arimidex and start prolia shots. There is no way I'm putting an IV of reclast in my arm.. That terrifies me. You have a very good point about fosomax! Morning coffee is essential! Lol.. Well I'm glad you have things going in a good direction forw yourself.. Hope I can set the same.
Thanks for all your help
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B123 - I started on Femara and switched to Arimidex at the six month point. I took Arimidex for about 18 months and then switched back to Femara, which I am still on. I made these switches due to trigger thumb, finger, toe and ankle, at differing times, and while on Arimidex a knee injury that had an inflammatory response that required a cortisone shot. I have found that my side effects would resolve if I changed drugs and/or manufacturers periodically.
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specialK, I never thought of that?? Did you find that federal was easier on bones? If we start prolia is it something we need to continue for life time? The more I look into Evista, the more I don't think it's a good idea. I don't think it's meant for post dx.
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B123 - from what I have read, which is not a lot, it seems that Evista may not be as protective as one would want post-diagnosis. I would seek some additional professionalopinions about it if I were in your shoes. I started on Femara and within the first six months I had bone loss. I had a good baseline prior to chemo and AI drugs so it was very apparent. That is when I started Prolia. Because I already had osteopenia it is likely I will continue on Prolia even when I'm done with anti-hormonals.
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At one point it was thought that as both a SERM and a bone-strengthener you were getting a “twofer” with Evista (raloxifene). Sounded too good to be true. And it was. As a SERM it’s weaker than tamoxifen, and as a bone-strengthener it isn’t as effective as either bisphosphonates or biologics. It is not recommended for postmenopausal women, and can’t be given with an AI. So back to the drawing board.
Since I last posted, I had my Feb. followup with my MO. She agreed that my GERD is a dealbreaker for the oral bisphosphonates--and because of the erosive lesions in my stomach and esophagus, ditching the PPIs isn’t a good idea, either. (I once had a holistic MD back in my Anchor HMO days, and he had me dump H2 agonists--Zantac or Pepcid--for deglycherrhized licorice. I lasted barely a week and went through an economy-size bottle of TUMS Ultra (which, with the gusher of acid I was pumping out which helped absorb it, should have strengthened my bones in and of itself). I was managing on PPIs--yet I was still too anemic to donate blood, despite eating red meat at least twice a week. An upper endoscopy (and biopsy) showed two “small erosions of probable chemical origin.” Not coincidentally, I had been taking NSAIDs for years--when premenopausal to deal with cramps, then for arthritis, and finally for post-knee-replacement surgical pain after weaning off opioids, Tramadol and gabapentin.
But she insists I get Zometa infusions (same as Reclast, which is notorious for producing paradoxical horizontal femur fractures in women who weren’t even osteopenic to begin with). She mentioned it protects against mets, but I pointed out that Prolia does it better (she hemmed & hawed and then admitted the data appeared that way but wasn’t final yet). I was nonplussed, as half the women in my support group were getting it (and were her patients). Then I found out the real reason: she had her NP run it through the computer and found out that my Medicare Part D plan--Humana Enhanced--doesn’t have it in its formulary. A double paradox: Part B and its supplements cover I.V. infusions, which must be administered in a facility (i.e., the infusion room), but injections are “drugs” (because even though administered by a physician or nurse, it’s done in the office and can even theoretically be self-administered. The other half of the paradox? If you’re under 65, and can’t afford the $5000/shot, if insured you get a co-pay assistance card and if uninsured, maybe even assistance from the mfr. to get it for free. But if you are on Medicare Part D, it is illegal to use drug company assistance, and co-pay cards are available only for patients whose insurers would pick up the difference between MSRP and the reduced patient co-pay....and Medicare forbids the use of these coupons as well. Even if your plan won’t cover a drug at all or you’re in the “donut hole," which makes you technically uninsured, it’s still illegal to use them or accept assistance from a drug mfr. Not just that, I have crappy veins (and now only half as many veins available due to LE precautions) and I am not about to risk blowing any of them on an inferior drug when I may need them down the line to maintain or save my life!
Bob (my husband, a cardiologist) says that my MO should prescribe and administer Prolia and then (not before, as a “mother, may I?” note) write a letter to Humana explaining that it is a superior drug with fewer side effects, and wouldn’t endanger my few remaining usable veins. He says he’s never had a denial from any insurance carrier (including Humana Part D) for any of his patients after submitting such a letter--and that if the MO won’t, he will (making an exception to the unwritten rule never to treat one’s family members). If approved, it’d be covered as a “specialty drug” at 33% and cost less than $2K/shot. Still a lot, but $4000 rather than $10,000 per year for three years---$12K vs. 30K--is doable. It’d probably still kick me into the donut hole and back out into “catastrophic coverage,” but even in the latter category, the out-of-pocket is still 100% for anything not either on formulary or granted as an exception.
I shudder to think what will happen if & when I get to Stage IV and have to go on Ibrance......at $9000 per MONTH. Maybe the insurance companies figure that if you’re over 65, your life isn’t as worth saving as someone not yet a senior. (I will very seriously see if I can get at least my first shot in Italy next month......where it’d be MUCH cheaper, even 100% out of pocket, than here),
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I just went to the Prolia website, and it says that for Medicare patients, if the doctor insists the shot be given at the “injection room’” (i.e. chemo suite) even if only injected rather than infused, it would be a “treatment” covered 100% under Part B, rather than a “drug.” If the doctor just writes a prescription (for either her or me to inject), it could be filled at a “specialty pharmacy” under Part D for almost all plans--including mine--and without prior authorization to boot. (Of course, it would cost much more under Part D rather than the co-pay-free Part B. So something’s fishy here. I should find out whether the chemo suite at Kellogg Cancer Center refuses to administer injections instead of I.V.s. If so, maybe I should find a different system’s MO to prescribe it under Part B as a “treatment.” Yes, I know that both it and Zometa have the aches-and-flu-ey feeling side effect....but Prolia would be more protective against both bone loss and mets, not ruin a vein, not cause paradoxical fractures it was intended to prevent, and I probably wouldn’t have to be on it possibly for the rest of my life.
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Hi ChiSandy- I do think you should push your MO for the Prolia.
Here is the info on the bco site too about it reducing reoccurrence risk. A two fer in my opinion.
http://www.breastcancer.org/research-news/prolia-r...
The achiness for a few days is something you can overcome. We have all gone through worse, right?
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specialK thanks for looking into that, it's just what I suspected. I really like my MO but not sure why she would recommend Evista!? Ok so I'm going to go with the Prolia (hoping it's covered) and stay on arimidex. Just had the dentist appt done, next another bone density, then I will see an endocr.
Chi sandy, glad you found out its covered for you!! And thank you for all the info.. This helps so much.
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So, just got word from my MO that I have ostopenia, and he is sending me to a bone specialist to discuss options. He let me know that the specialist will likely push me to take some form of drug for it. I have a tendency to acid reflux (nothing serious enough to be treated for - antacids usually do the trick, but my father died of esophageal cancer). I am 66, have been on Femara for 6 months. The bone density test was done after I'd been on Femara for 6 months, so I'm not sure if I was ostopenic prior to the Femara or not. I am really not happy at the thought of more drugs (take meds for rheumatoid arthritis as well as the letrozole). Any thoughts ladies?
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Hi Stellamaris, I am in a similar situation and am already scheduled to get my first Prolia shot in July. I had my first Dexa after chemo and it showed some osteopenia in the spine. My second Dexa almost 2.5 years later showed the osteopenia in the spine had progressed more than what they would consider acceptable. If it weren't for recent studies showing Prolia might give some protection against bone mets I wouldn't be doing it now. But being stage 3 I think I should give Prolia a try,
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thanks for the reply muska. I wish you luck with your treatment. How often will you have to have an injection?
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Thank you,Stellamaris. Proliais given once every six months I believe. My MO said I shouldhave it for two years.
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