Prolia Shots for Increasing Osteopenia
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Huh, my endocrinologist told me Monday that he wants me to get 1000mg of calcium a day and while he'd prefer it all comes from food knows that it won't.
I couldn't take calcium carbonate or calcium citrate, both screwed up my gut most painfully. I can take calcium phosphate though, although I've stopped b/c my calcium levels hit the top end of acceptable.
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Minus, thanks for pointing out the difference to me for the Calcium supplements. Have you ever had your parathyroid hormone tested? I am having that done soon too. GP ordered it. Learned that there is a correlation to OS, as all that parathyroid does is regulate the amount of calcium in your blood. I am glad to have an arsenal of information now before taking/needing another drug for my OS. First will see where I am when I get another DEXA, will know if I have a parathyroid condition, will know if I am really Vit D deficient, and will have 2 more rounds of bloodwork to compare my Ca readings. That should be enough for me to figure out adding meds and adding supplements that I will actually benefit from taking. I just blew $30. on hair products that aren't working for my thinning hair!
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Any thoughts on Prolia shots (twice a year) vs RECLAST IV (once a year)?
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ctm - no I wasn't aware of the parathyroid interaction. Something else I'll have to investigate. Sigh. Sometimes I think it would be easier to just go back to medical school. Medicare pays for a DEXA every two years, and my next one is December. I too will be interested in the results.
Nash: I thought RECLAST wasn't usually offered unless you are a cancer patient with serious issues, but I think that has changed. I will be asking my MO this fall. You might check the cost. Since Reclast is an infusion, it may be considerably higher. Attached is an interesting comparison that I found.
https://www.rxlist.com/reclast_vs_prolia/drugs-con...
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my drs originally mentioned reclast as an option but Prolia was their preferred treatment.
For me, Prolia is easier logistically- it's a quick shot. Reclast would take longer, require starting an IV (& I hate iv's lol) and apparently some people feel flu'ish / sore for a couple days after. My 2 prolia shots have been boring and uneventful.0 -
I was diagnosed with osteoporosis a month ago at a local hospital. They did one hip and the lumber spine. Then I found that the cancer center hospital that I use tests both the thoracic spine and the lumber spine --- plus both hips. So I decided to go there for a second opinion. They found NO osteoporosis and just mild osteopenia in my hips -- and the spine was fine. So, I can quit researching osteoporosis drugs for the time being. However, I visited my oral surgeon after the Osteoporosis diagnosis and he was insistent that I use Fosamax rather than Prolia. Please read the latest articles on Prolia --- seems that when you quit taking the drug all bone gain is lost and maybe a little more. They are also now talking about the potential of spontaneous spine fractures immediately after stopping the drug. My oral surgeon said I would have to be off prolia for a year before he would pull a tooth. By the way, he told me his wife is currently going through chemo for triple negative BC. It kind of made me embarrassed for worrying about my little osteoporosis side effect of BC from the AI's.
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jessie - if you read back, most of us have been following the articles about Prolia regularly. There's been a good amount of info about Fosamax or Boniva or the other biosphosphonate. They are a royal pain in the neck and I didn't find they helped much. Yes there are possibilities of some jaw problems with Prolia. My periodontist & endodontist & oral surgeon have all said that invasive dental work should be done at the end of the 6 month cycle. No need to wait a year. Further, three docs have recommended I take it for 6 years and then take a drug holiday for a year. Who knows what they'll have by then.
BTW - I don't take Als, since I'm hormone negative. My bone loss is thanks to the heavy duty chemo drugs.
As I mentioned above, I have a DEXA scan every 2 years and have had them for the last 15 years. I love it that my scores are now just above osteopenia. I already fell once and broke an arm, thanks to the neuropathy in my feet from the chemo. I will continue the Prolia as long as I can.
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MinusTwo --- What did you not like about Fosamax? I took it years ago after massive doses of Lupron. In those days it was a daily pill and I quit. However, now I understand you only take the pill once a week. Bone loss after Lupron grows back by itself which mine did. The Prolia must be taken for life if you don't want to lose what you've gained by stopping the drug. Am I interpreting that right? What is the long term advantage of Prolia?
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Jessie - Hoping Special K will chime in. She's been on Prolia longer than I have and knows more details about the loss of bone when you quit. I don't intend to quit. I will just take a 'drug holiday' and start again. Or work with my gyn & MO to find the next best thing.
Years ago, I tried Fosamax (once a day) Actonel (once a week) and Boniva (once a month). In each case I could not get them to work with my life style (take and stay upright for a specified time) and I had heartburn, back pain, diarrhea and other side effects. In addition, the biosphonates can also cause osteonecrosis of the jaw, as can Prolia. Yes, scares the $h*t out of me, but apparently in all cases it's rare.
The best thing I did to reduce osteopenia was to quit smoking. That was 12 years ago now.
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Nash- the only thing I can share with you is that Prolia seems to be better for cancer patients because they also use it to treat bone mets. There was some research published a couple years ago on BCO (see below) that suggest it helps to reduce re-occurrence risk in the bones for hormone positive bc patients. I talked to my MO about it and he said the research was early but encouraging. He always told me that Prolia was the best for women whose bones are impacted by the AI drugs.
For women who have not had cancer, there are other drugs they are required to do before they end up with Prolia. I have a friend with pretty severe osteoporosis and had to do a whole suite of drugs including Reclast, Forteo and now is finally on Prolia. I was never suggested anything else, my docs think Prolia is the drug for me.
I have been off the AI drugs about 18 months now. My last bone scan said things were stable but not really better going off the AI drugs. I still get 2 shots a year and my insurance covers it. I have a history of osteoporosis in my family and was slightly osteopenic going in to all this in my early 50s. I saw what osteoporosis did to my mom in later years with broken hip and leg fracture and doing all I can to avoid this.
https://www.breastcancer.org/research-news/prolia-reduces-recurrence-risk-for-some
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jessie - I went straight to Prolia when the need arose after chemo and six months of Femara (letrozole) took my pre-existing osteopenia to the brink of osteoporosis. I was diagnosed with osteopenia after a total hysterectomy/ooph at 45, and I fit the physical profile. I had tried oral meds at that time but could not handle the gastric SE because I had also previously had a reflux surgery about five or six years before the hyst. I had severe burning upon taking the oral meds - tried Actonel and Boniva - and didn't want to risk damage to my reconstructed stomach and gastro-esophageal junction. At that time Reclast infusions were not given in the military hospitals in which I was treated. I remained stable for nine years without meds until after the breast cancer diagnosis. I had six years of Prolia injections with no side effects, and my oncologist recommended a "holiday" as minus described above. I was an exceptional responder on Prolia - regained normal density - and the highest percentage of density recovery of any of his patients. I had a DEXA a year after stopping Prolia and have not lost any density at this point, and not had any spontaneous fracture issues. I have had invasive dental work in this holiday - an extraction, bone graft, and dental implant with no issues. The extraction and bone graft were done six months after stopping and this work was not caused by either Prolia or letrozole - this was a very old root canal and crown that I had for 45 years, and a complication occurred under it. I had full head focused CT scans that indicate this is an isolated mechanical issue, not due to meds. The bone graft worked great, my maxillofacial surgeon was very pleased, I had no healing issues and he does not have any concerns going forward. It is important not to assume absolutes about any of the drugs we take, such as everyone loses density or experiences fractures when stopping Prolia. Some obviously have, but it is not a universal. Due to the litigious nature of our society drug manufacturers have to include every possibility in their literature.
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Thanks Jazzy & SpecialK
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Jazzy just told me about this thread. I'll be starting Prolia in the next week or so. Oncologist said 2 or 3 years. My most recent DEXA scan showed a 4.5% decline in 2 years. I've been osteoporotic for a few years. He mentioned Zometa last September, but I wasn't keen on being in the infusion room. Then it got taken off the table in March as I have CKD and Zometa is hard on the kidneys.
I'd love to hear all the good and bad experiences. Besides the risk of ONJ, my oncologist said bone pain for a few days is the most common side effect.
Thanks, Karen
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Karen: I've just had my 7th shot - every 6 months so it's been 3-1/2 years. I don't have any side effects at all and they are SO easy. The chemo put me in full on osteoporosis. The Prolia brought me back almost out of osteopenia to 'normal'. I'm looking forward to my DEXA scan in December to see where I currently stand.
I get the shots from my OB/Gyn. My MO said to keep going for 3 more years after the 1st three. Then maybe take a break for a year. Who knows what great knowledge we will have by then.
My dentist, periodontist & endodontist all agree that it would be good to wait 6 months after the last shot before major dental work - like an extraction. I had all major dental work done before starting the shots & fortunately my mouth continues OK.
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I got my first Prolia shot two weeks ago. My doctor's office said generally if you're going to have side effects, they'll show up pretty quickly. They have for me, but they're pretty mild--some weird bone pain, a bit of dry mouth. But I fractured my pelvis last summer from running and was then dx'd with osteoporosis so I'm highly motivated to stick with this, assuming I have insurance!
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Hi Karen- I usually just feel a bit achy for a few days after the shot, sort of like you are coming down with something. I usually do my shots late in the week and then by the time the reaction comes, I am home vs. at work. But any of it is manageable with tylenol, etc.It lasts a day or two for me, then fine. Stray bone ache from time to time but nothing bigger.
This article is four years old but I did discuss it with my MO and he said there is some evidence it does help bc patients with reduced risks around bone mets. They use this same drug for infusion when people do have bone mets, at a higher dosage:
https://www.breastcancer.org/research-news/prolia-reduces-recurrence-risk-for-some
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edj3,
You said that I couldn't take calcium carbonate or calcium citrate. I stopped taking calcium completely because it did a real job on my stomach. Is there something special about calcium phosphate?
I haven't taken Prolia yet but it's something my Oncologist said I may have to take in the future. I haven't read a lot about it yet but what I've read so far doesn't sound like something I'd like to take, though I'll try to keep an open mind. I've fallen four times in the last year...silly, stupid falls...and my new physical therapist says i"m prone to falling so need to take precautions. He had me get a cane but I haven't really used it yet cause I"m kind of embarassed.
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My OB/Gyn will not give my Prolia shots without blood tests for both Calcuim and Vit D before each shot.
I take Citracal with D, which two of my docs said is the easiest on the gut. I've taken it for at least 15 years - long before I was diagnosed with cancer. Along with starting weigh bearing exercises and quitting smoking in 2007 - this supplement helped bring my bones back from osteopenia to normal. Then along came chemo & tanked them again. However Viewfinder, it is calcuim citrate.
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viewfinder that was the only one that didn't trash my gut. I stopped all calcium last April, though, because my calcium levels are at the very top of the normal range. I've been tested for parathyroid issues and came back fine.
I've always lifted weights, always run, my weight's been good, and I never smoked. So for me to have osteoporosis is a bit depressing. That's why I'm highly motivated to continue with the Prolia--I mean, seriously, the inferior pubic ramus on my right side broke from running. No falls, no close calls, just from running.
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Insurance approved the Prolia shot - its good for one year/2 shots. My first one is this Friday - wish me luck
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Karen - good luck. I finally got mine rescheduled for the 18th.
Sunset margarita on the right, coconut margarita on the left
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I will read and read and read about whatever they want to prescribe or do to me. My radiation ended in the middle of May and I haven't even gotten the nerve up yet to take an AI. I really need to get on that pill. I have seen my Oncologist since my last post on this topic --- he decided that I can be on the AI for a year before I take any osteoporosis drug -- even though I currently have osteopenia in my hips -- spine is fine. My oral surgeon did tell me he would rather I take fosamax since I have periodontal disease. Have had it for 30 years and just lost my first tooth. If I get a tooth ache I can't wait 6 months for the Prolia to wear off. Actually my oral surgeon told me I would have to wait a year if I'm on Prolia. I don't think he is trying to scare me because he told me during our visit that his wife is currently going through triple negative BC treatment. My big problem is I am a medicine phobic by nature. I only take my thyroid pill and really am fighting having to take anything. But I know that I'm going to have to take the pills eventually - or I should say soon.
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Jessie- I was slightly osteopenic going in to bc, and then it got worse on the AIs, I never went full on osteoporosis, but with a family history of it and watching my mother break a hip and a leg at points later in her life, At that time, my sister was okay but she now has osteoporosis in her spine (she also had bc but not the hormone positive kind and no AIs).
I knew I needed to get proactive with it my bone health. After about 18 months on the AIs, things were not moving in the right direction and my MO suggested Prolia. I started the injections in January 2015 and it has stabilized things. I am now off the AIs for about 19 months and did check bone health last year and it was stable but not better. Will talk to my doctor about doing another scan end of the year when i see her next week.
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I had Osteopenia just as I started Anastrazole. My MO wanted me to begin the Prolia injections. I asked to have a year to see if I could take care of my own bone health. My MO agreed. I began a supplement regimen of Calcium, Magnesium, D3, among B-12 and some other supplements I was already taking. My bone scan one year later showed that the Osteopenia was reversed.
If you have/had hormone receptive cancer...Please find an AI that you can tolerate. Please don’t consider anti-hormonal treatment as optional. It is the closest thing to a cure that we have available to us. If you can endure lumpectomies, mastectomies, chemo, radiation...you can handle SE of AI’s. Prolia is the next miracle drug that can stop the progression of Osteoporosis.
Ladies...you can do this! Remember, from the moment you received your cancer diagnosis the goal was to be cancer free. The objective doesn’t change after surgery, chemo, rads...It is now a lifelong journey to remain cancer free.
Rant over...
Bella.
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bella2013 , my goal is different.
Sure I want to be free of cancer for the rest of my life. But I also want my quality of life to include the activities that are important to me. That includes a whole lot of physical activity, exercise, and a ton of running. If tamoxifen diminishes that, I will stop taking it with zero hesitation.
That's my choice.
Pretty clearly, your choice is different which is fine. But don't assume we all have the same goals or will make the same choices you do.
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ed3 - my goals are similar to yours. Quality of life is the most important thing to me - not how long I live. I don't have the same issues with Tamoxifen since I was hormone negative. But there are lots of other choices that I make all the time skewed towards quality and not quantity (longevity). I suspect we are the outliers, but everyone does have to chose their own priorities.
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Bella - for me AIs were way worse than bilat, chemo, rads, ooph as the side effects were ongoing - I endured horrific side effects for 3 1/2 years including 3 wrist surgeries due to AI's joint pain, cognitive functioning problems and the list goes on. I quit in March 2010 and as of last week at my 6 month check up I was NED. The AIs were making my QOL of life decline - it was just too much to tolerate and I tried all 3 AIs and tamox. Yes I want to live a long life, but I want quality. I'm 13+ years since my stage 3 diagnosis and 9 1/2 years since stopping AIs.
Minus2 and edj - same . goals as the two of you.
Had my first Prolia shot today - sure hope I'm one of the lucky ones with no side effects - will keep my fingers crossed.
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Jazzygirl --So Prolia prevented further bone loss but did not increase bone mass for you. That's interesting - thought it is supposed to build bone mass.
Bella - Your osteopenia was reversed while you were on an AI from taking the supplements? That's wonderful. Would you mind telling the type and amount of the supplements you took that helped your bone? I take D3, but I don't get enough calcium and can't figure out how to get enough through food. One time I took tums and couldn't go the the bathroom afterwards -- it was horrible. You are right - we did go through a lot to get rid of our cancer and I need to a least try the pill. It reduces recurrence by 30% --- my oncoscore recurrence estimate with the AI is 6% -- so without the AI I will have a 9% risk. Of course, I'm ILC so who knows if the oncoscore is as accurate for my cancer
Edj3 and Karen -- Bella wasn't saying to take the AI if it is disabling. She's just pointing out the advantages and trying to get me to try it. She was trying to help me and she did. Two of my closest friends have been on AI's for almost 5 years and have never had side effects. I'm just a pill phobic and her pointing out how far I've come through this cancer was a good point for me to consider.
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jessie123 I didn't think Prolia increased bone mass. I believe it's Forteo/Tymlos (think that's the other drug) that do increase bone mass but they're daily injections for two years max.
karen1956, I had my first Prolia shot three weeks ago. I asked how quickly side effects would show up if I were to get them and the nurse said in the first week. I do have some weird aches I never had before but so far so good. I'm highly, highly motivated to take the Prolia since I did fracture my pelvis running last year.
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Edj3 -- yep, it increases bone density. I just went to prolia.com to make sure I wasn't dreaming. If I develop osteoporosis I'm going to start with fosamax. If that doesn't work I'll probably stop the AI drug. I had massive doses of Lupron when I was in my 30's before surgery for fibroid tumors. At that time it was just FDA approved for men with advanced prostate cancer and I was given their dose. Lupron stops estrogen production (similar to Al's). Anyway I developed Osteoporosis at that young age, but my bone density grew back over time. Hoping that will happen with the AI if I stop it.
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