Prolia Shots for Increasing Osteopenia
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I use Citracal and also take slow-mag. Helps me sleep and with the cramps I get in my feet.
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Hi jazzygirl! It's me, formerly known as kathec, I met you on the hermits thread a couple years ago now. I have done 3 prolia injections, and am way good now. As a matter of fact, i was going to talk with my endocrinologist about stopping them for a while, if they do it like that, and then resuming if necessary. I was ok before chemo, which did render me full~on osteoporotic, and now I am not even osteopoenic! Good luck my dear, and it is nice to see you! Sounds like you are doing well!
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My Xgeva shots have reduced my bone mets to NED and my bone density is improving. I'm not osteopenic. I realize that prolia and xgeva are a little different, but my experience has been nothing but positive. I've been on the shots monthly for more than 3 years and have had no side effects at all.
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I'm glad to hear the positive experiences with Prolia shots... so I may just give them a try.
The purpose was not specifically for bone-building... my MO was sharing the latest research on BC early-stagers and how Prolia may have some protection against progression to bone mets. Since I am off all the AIs, this is why she wanted me to get the shots. I did ask her where, if I were to have a distant recurrence, it would occur, and she said that statistically speaking, it would be to the bones.
Also, regarding, soy, I have no restrictions, even though I am 100% ER+. My MO is a deeply committed MD, a brilliant researcher, and Chief of the Oncology Department. Initially, all she said was don't have soy as a main course (tofu, etc.) but now she is saying there is no credible CLINICAL evidence that soy increases tumors in ER+ women. I guess all MOs are different.
With regard to supplements, she did tell me to stay away from ALL antioxidant supplements: Vitamins A, C, and E. She said that recent studies showed that these supplements not only protected normal cells from free radicals, but also protected cancer cells.
She said if I ate a healthy diet of real food, and took the supplements she recommended (calcium, magnesium, and Vitamin D) I wouldn't need a multi-vitamin that included antioxidants.
Like I said... all our MOs seem to have different protocols.
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Tomboy- hi, and good to hear from you! I had not seen you on other threads besides Hermits and glad you are still around. Thanks for telling me about your experience with Prolia too. Sounds like it has really helped.
Well, the deed is done and what I thought would be a quick trip turned out to be longer than expected. I watched two rounds of people come and go in while I was there and after a half hour past my apt, I asked the front desk "how much longer please?" I am sure they need to get folks in doing their infusions and the like, but I do first thing apts so I don't get stuck with waiting at the end of the day. I finally got seen after 45 min of waiting (they recently moved their office and are anything but efficient right now).
I had a very nice nurse who asked me if I had read up on things, understood about Prolia, the benefits, possible SEs, etc. She said the folks that seem to have the worse SEs are those who take the infused version of this drug for bone mets. It is a simple shot and I was told that the next few days, I may experience body aches and light flu-like symptoms, but that I should just handle that with ibuprofen and other benadryl, as needed. She said it takes awhile to get into your system, but that if I am going to have any SEs from the shot, I will feel them in the next few days. I don't have a lot planned for this week (not working right now as I am in between contracting assignments), so it is a good time to try this and have the space for anything I may need to deal with. Fingers crossed.
She also asked me the last time I had my Vit D levels checked and said it was last summer, so she thought it would be good to have those rechecked again in the next month. I have always been either deficient or on the lower side of normal. She reminded me (which I know) that you should not take too much Vit D as it has a toxicity with it. I take 5000 mg but my PCP said that was okay, but no higher. She said you must keep up with the calcium and Vit D intake, and said I was all over it, along with doing the weight bearing exercise.
Will keep you posted as I go through the week and any experience around this. I really appreciate the great feedback here and hope I will be able to help others that come here in the future as they are trying to decide whether to do this or not.
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Blessings, I'd be curious to see whatever research your onc is talking about re. antioxidant supplements. Can you give us a link to something? I've read cautions about high dose antioxidants possibly having a counter effect on chemo infusions. Really curious if what you've stated is newer information since I haven't seen it and take both C and E, with noticeable issues when I don't.
Here's the calcium supplement I'm currently using and really like. I use their newest 3 tablet a day version. http://www.jarrow.com/product/77/Bone-Up
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Um, guys, really, if you stop Prolia injections the benefits REVERSE themselves. You can't stop them
I don't know why no one told me this before I started, either
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icandothis makes a very good point about the potential need to continue Prolia on an indefinite basis. I need to be on Femara so will do Prolia for now, and my MO has said as long as I am on an aromatase inhibitor I will be on Prolia. I am bothered by the cost of the drug in general, and for all who have to bear the burden of paying for all or part of it, but it doesn't impact me personally as I have insurance with no deductible, no co-insurance, only a $12 co-pay to receive the injection. After five years - which will be in about 18 months, I am looking to switch to Tamoxifen, at which time I might be able to go off Prolia, if I can maintain density. I am not opposed to having Reclast as it is IV form, but I can't tolerate any oral bisphosphonates due to earlier surgery for reflux - I tried them (both Boniva and Actonel) when first diagnosed with osteopenia 14 years ago after a total hyst/ooph and could not handle the SEs.
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Hi Jazzy, lots of good info here! I may be joining you all with the shots, will find out tomorrow.
The earlier discussion about vit.k. Check with some doc if you are on COUMADIN /warfarin.
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Spookie- keep us posted and glad you hopped on over here to join us.
Got a we bit if aches going on, but nothing bad yet......
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Jazzy thanks for starting this and mentioning it on another thread. My MO was doubtful last year that I could even tolerate Fosamax with my GERD which is worsening. He said in essence I had already failed Fosamax. I've taken it since October. Won't see MO until July. I waited several months until dentist appt. to start it and then did so with his blessing. I have had osteopenia for about 10 years; my gyn had me on Evista prior to BC for it. Right now I'm on the 35 mg Fos. - generic. Had last Dexa Jan 2014. I just checked my insurance - Tier 3 and prior approval. Not sure what hoops I would have to jump thru. Would anyone give me the amount they pay? We thru DH work have BCBS PPO which has gen. been pretty good. But after just paying $60 for a tiny bottle of eyedrops for laser eye surg. just wonder what Prolia would be. The generic Fos. is $3.50/month.
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luv - Prolia also has a patient program to assist with cost - I was having my first injection prior to knowing what my insurance would pay so they signed me up with Prolia to replace the injectable they were giving me. Here is a link:
http://www.amgenassist.com/support_programs/prolia_first_step_support.jsp?info=false
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Thanks Special. I have filed that away in my ever growing bookmarks.
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Luvmygoats- my insurance will pay for it with a $30 co-pay.I have a BSBC HMO plan.
I think it costs around $1600 per year (2 injections) per my on-line research, but will see what they bill through the MO's office when I get the EOB.
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dlb823,
The calcium supplement you are taking sounds like it covers everything to protect the bones. But I have read somewhere to avoid copper which promotes angiogenesis which is included in your supplement. As far as antioxidants, I am taking 500mg vitamin C. I think I remember reading not good things about Vitamin E for cancer patients. You might want to investigate it further. Iron should be avoided too.
I found a link for an article I posted last year regarding antioxidants:
http://www.nbcnews.com/health/health-news/supplements-might-fuel-cancer-study-finds-n18561
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Interesting article, new2bc. Thanks for sharing it. What I don't understand is when they give Vitamin E with acetylcysteine, for example, how can they then turn around and say it's the Vitamin E that's the problem? Also Vitamin E is available in several different forms, and this article doesn't say which form they used or how much was used in their mouse doses.
The other problems I have with supplement studies in general is that they rarely if ever use high quality natural supplements derived from food, in favor of synthetic chemical junk... they typically give them to people who have never been health conscious and probably have standard American diets (SAD)... and unlike health conscious people, those patients or subjects aren't asked to change anything else about their behaviors -- all things that IMO factor into outcomes. And when the studies are on mice, it's even harder to know if the outcome would be the same in humans.
Thanks for the heads up on the copper. I'm familiar with angiogenesis and Dr. Li's work, but didn't realize that copper should be avoided, so hadn't even spotted it as possibly being a questionable ingredient for us. And I also use a vegan iron supplement a few times a week, so that's something else I guess I ought to look into and ask my onc about. Good info. Thanks! Deanna
Rather than post again, I'm stopping back to add a link to an interesting blog I coincidentally received this morning re. iron and breast cancer that I thought might interest some of you. Nothing to do with Prolia, but with the comment re. iron new2bc brought up. http://breastcancerconqueror.com/high-levels-miner...
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Hi ladies- just wanted you to know my reactions from the Prolia shot were very minimal this week. I had a bit of achiness and felt tired in the afternoons the first few days, but nothing worse than when I am coming down with a cold.
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HI folks- I had my Vit D checked recently and am at 54, which is the best it has ever been. It has always been between 35 to 45 and considered either low to low normal, but I upped the supplement to 5000 IUs per day and it seems to be working. In reading up on this, between 50-60 is a good range to be in so I will continue on that amount.
I had some weird achy feeling in the bones of my hands recently and wondered if it may be related to the Prolia shot? I had that almost 2 months ago now, long enough for it too be well into my system and doing it's thing. I know they said it might give me bone aches on occaison. Nothing else has been a problem, just thought it was a weird pain and of course, gone in a day.
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Hello everyone- got my second Prolia shot this week during my 6 month visit to the MO. Check ups have gone well this month. In December, we will do my bone density again and see how this drug is working for me after a year.
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Hi ladies- I hope everyone is doing well in the new year. I wanted to share some good news about the Prolia shots with respect to bone loss on the AIs. I had mentioned to all of you that my MO recommended we do this to counteract the bone loss since starting the AIs almost three years ago. I came into this just slightly osteopenic with a baseline done right before my DX through a routine check up that year. There was consistent loss from the time I began in 2013.
I got my report today and the Prolia is working! I have had a 6% increase in my spine this past year and am back to the baseline values in 2012. Stlll slightly osteopenic, but the best increase. I am up 4% in the femurs, which seem to have had the worse decline. Still down 8% from the baseline but on the way up.
I wanted to find out if this was working before I continue and get my next shot end of the month. I am scheduled to see my MO for a check up and they give me the Prolia shot, but with new insurance (and higher co-pays), some things I needed to know before we continue.
Just thought I would share this for any of you considering this drug while you were on the AIs. My MO said they may only pay for this as long as I am on the AIs, which will be two more years come March. I will worry about that then given so much changes in the healthcare world year to year.
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I will be joining you as soon as I have required blood work. Since I only saw an endocrinologist (specialty being bone disease) yesterday I am just now having a look for forums. But the good news from him (which my MO had inferred while back) is that the San Antonio conference last month had a report on a 5 year study and it seems that it can also prevent recurrence. I have not had time to read the abstract but plan to.
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Jazzy - looks like I too will be joining the Prolia crowd. But my doc said to wait until I finish my spring traveling, so it will be June after my upcoming PET/CT.
One question - I read on a previous page that the benefits reverse if you quit Prolia. I've known several people that only had 3 shots & stopped because the osteoporosis reversed enough & stayed stable. Also my Gyn said that I could certainly stop if the density built back up. Maybe the reversal is only for ER/PR positive ladies who are continuing to take drugs (als?) ? Anyone know?
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I’m definitely going to discuss Prolia with my PCP (he prefers weightbearing, “loading” exercise), MO (who mentioned Fosamax--no way, Jose) and the “Bone Whisperer” at U of C, Dr. Favus. (My shrink says his wife’s osteoporosis was reversed by the Prolia Dr. Favus administered). Been on letrozole (Roxane brand) a bit over a week--getting a bit sweaty overnight and a little stiff in the morning & when getting up from sitting--but nothing I haven’t dealt with before.
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Good morning ladies- I am glad I started this thread, as it seems like more women are joining the Prolia bandwagon. I was amazed to see there is was a study around Prolia and reocurrence! Here is the link on bco, and going to put that on the list to talk to my MO about end of the month, along with a few other things.
http://www.breastcancer.org/research-news/prolia-r...MinusTwo- I was not told things reverse, but was told that once the five years is over, insurance may not pay for it anymore. Good question though?
ChiSandy- I do resistance training 3X a week and though my guess is that it helps, it did not keep the numbers from going in the wrong direction. My MO brought the subject up about Prolia early on, because I had concerns about bone loss going in to the AIs due to a family history of osteoporosis. My mother had osteoporosis of the teeth, broke a hip and a leg towards the end of her life. After being on it 18 months, we did a bone density test end of 2014, and that is when the numbers really showed what it was doing to me. I discussed it with my MO's office the following January during that follow up (a year ago) and that is when they said let's go ahead and start the Prolia.
I see my MO on the 29th and will share any insights from my conversation with him.
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I will be starting prolia as soon as they suppress my ovaries, or take them out, when I start AI.
My MO was very excited about the new research that just came out. Prolia given with AI to early stage post menopausal bc patients with hormone receptor +bc has a 18% less recurrent rate. That really is what drove my treatment plan, as it seems would benefit me more than chemo. As someone who has had bc twice, I will do what I can.
I think the plan is to start this month. I will know more on the 20th.
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jazzy girl, thanks for this forum. I got the word on my BW today and will pick up the Rx this weekend and start next week. I started working about being away a year from now and how that will work but I have to start anyway. I saw your post above about the Vit D and FYI, mine came back 151, one over normal. Odd I think since I have only been taking 3000 units/day. I wonder how many people approach toxicity with large doses. In Canada the test is not paid for normally (not the case for me) and since we live in the north I know many people increase dosage in winter. Anyway, I expect to have my first s/c injection next week. Thanks for the link and I will look at it next.
ChiSandy, despite my serious weight bearing exercise over the past decade with trek leading in the Himalaya~~2 treks to Annapurna Base Camp in Nepal in 2014 and Bhutan trek in Sept. this past year my bone density tests show a serious downward trend. I will have been on Anastrozole for almost 3 years. BTW, I am 66, almost 67.
For those of you already on Prolix, is there anything I should watch out for?
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Marian - I saw your comment about picking up an RX. Maybe you are getting another one of the 3 or 4 biosphosphonates? Prolia is only given as an injection every six months. Boy your trek adventures sound amazing.
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After reading reports of the Prolia study and the comments here, I think I will message my MO tomorrow about receiving Prolia. I could go down to the U of Chi. to get an appt. w/Dr. Favus, but who knows how long that might take? I’m seeing my MO next month anyway.
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Sandy - you might check with your GYN also. That's where I'll get my shots.
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Marian- regarding what you should know about Prolia, my MO's office told me the most common SE was feeling flu-ish sometimes a day or so after the shot. My experience was feeling a bit achy a day or so after, but nothing back and it did not keep me from doing things.
The only other SE I think I have had is some occasional bone pain. When I started the AIs, I had some misc. bone pain and it went away with time. I have had that come back but again since I started Prolia, nothing bad and it does not linger. I was told by my MO that if I ever had any bone pain for longer than two weeks to come in, because something else may be going on.
Do go out and read up on the Prolia shots side effects!
Also, they want you taking regular CA supplements with Vit D too while on this. I have always been on the Vit D low side and was taking up to 5K daily to improve mine. You do have to be careful with the dosage. My PCP checks mine once a year. I have since heard taking CA supplements does not help bone loss, but still taking them since I think it does provide the CA to increase the bones while on Prolia. Going to ask my MO a bit more about this one when I see him about the CA supplement question!
And regarding weight bearing exercise, I was doing it too but did not see it making a difference with bone loss. I think some of us come into this more prone to have the problems on the drugs vs. others. I have read on these threads some women have been able to manage bone loss through exercise, but not me. My mother had osteo at the end of her life, and was slightly osteopenic coming into all the despite doing all the shoulds. I was working with a personal trainer with weight training around the time I got the first results things were moving in the wrong direction. I still do the weight bearing exercise, but don't depend on it to save me from the AI bone loss.
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