Prolia Shots for Increasing Osteopenia
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SpecialK...thanks. I went thru natural menopause at a very early age (43) and was not diagnosed with BC until 59 so that makes perfect sense. I guess it's just part of the aging process. My lumbar spine t score was a -3.8 so I am guessing it time to do something.
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nash - same - early menopause (surgical) nine years prior to breast cancer at very similar ages to you, and I also fit the physical profile for osteoporosis, so I feel like it was bound to happen. I also totally understand how easy it is to associate it with the BC diagnosis due both to the impact of treatment and the timing of the need to remedy, right? I am right there with you!
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I was already in osteopenia before cancer. I didn't want to do anymore meds so I managed to bring my bones back to normal range by doing three things that affect bones: 1) quitting smoking; 2) quitting sodas (the carbonation); and 3) starting a weight bearing exercise program - eventually walking 5 miles a day.
Unfortunately the numbers I gained were aggravated into osteoporosis by the chemo (TCHP). Just a note - I never took Tamox or Als since I am ER/PR negative. Prolia is really working for me.
Nash - just to be extra cautious, have all your dental work done before you start.
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I went to my internist for the hip pain on my MO's advice and he is sending me for x-rays of hip and pelvic area. He said he wouldn't have done the bone scan he would have done the x-rays first. But an oncologists have to rule out bone metastasis. I think I just pulled a muscle from working out. I will do the x-rays on Monday and in the meantime I am taking Advil.
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Hi all, so my x-ray showed nothing. My internist thinks I just pulled a muscle. This cancer really makes you a hypochondriac.
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Good news dpako. Glad to hear it's not critical. You're right about where our imaginations head once we've been there before. Congrats and thanks for letting us know.
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I'm on my 4th Prolia inhection with no side effects. My good friend is a dentist said jaw necrosis is very rare as did my oncologist. If you're planning on any major dental surgery a quailfueddentist must work with your oncologist to coordinate treatment. Hope this helps. Happy New Year All
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My periodontist & dentist both said no dental surgery until 6 months after a shot. And then wait at least 3 months before another shot. Of course that doesn't take emergencies into consideration. Here's hoping none of us will have dental emergencies in 2019
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No dental surgeries touching bone but dental procedures that do not touch bone are allowed. I have had a gum graft soon after I started Prolia and just had an emergency root canal last week.
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It is my understanding that no extractions. I don't think my periodontist would do a gum graft but maybe he's overly cautious.
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I'm newly diagnosed -- haven't even had surgery yet, but I have been reading non-stop since diagnosis. I've gotten through the waiting on results, newly diagnosed and have even decided on a lumpectomy rather than a MX. So now I'm reading about the after treatment decisions. I'm post menopausal so will be on one of the "A" drugs. Does the worry never stop???? When I was in my 30's I had 3 months of Lupron shots for fibroid tumor removal. That caused an Osteoporosis reading of minus 2.7 in my hip --- that's a lot !!! The bone density grew back, but it took years. Even if I go on the Prolia shot I'll be in trouble because I have periodontal disease. You sometimes don't know in advance that you'll need a tooth extraction when you have periodontal problems. I've had 2 teeth extracted because of it and both times it happened quickly. Wow, I was thinking if I could just get through the surgery I'd be free of worry.
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Jessie- you learn to live through it and adjust - the worry goes away at times and can return at times. I feel like you do as I am anticipating prolia is in my future and over the years have had many emergency dental visits for root canals and in 2 cases extractions. I'm very interested in how this can be managed as well as a better understanding of exactly what is the risk.Some days I remind myself to take things one step at a time and that helps.
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My last dexa scan, after 2 years on letrozole, showed increasing osteopenia and a small amount of osteoporosis. My dr recommended taking a calcium and d3 supplement and adding in lots of exercise, especially walking. I’ll do a repeat dexa in a year to see if that’s helping or if I need to go to the shots.
jessie123 and MickeyB17, you might want to see about starting on the supplements to see if that helps you as well
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Jessie- I understand the feelings of being very overwhelmed with treatment, including long term. The best way to get through this is to write down all those questions somewhere for when you come to the time of starting the AIs and if you need any bone building drugs. Getting through MX, rads, chemo or anything else you may need to do is a lot to wrap your head around.
If you take any bone building drugs, be sure to get a baseline on your bone health before you start and then a year later. They may choose to put you on tamoxifen which does not impact the bones as much from what I heard. Tamoxifen has side effects and risks so best to understand that too.
I am here to tell you that I am six years out from dx and primary treatment, almost a year off the AI drugs and doing okay friend. Not sure what stage you are, but here to say you will get through this, but a cancer dx changes a lot for us. You will find your new normal with time.
Let us know how else we can help?
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I already had osteoporosis when I started Femara 4 years ago. The first DEXA done after two years showed a further decline in bone density of 5%, but the one I did recently at the 4 year mark showed a less drastic decline. Some of my bone density T-scores are worse than -3. I also have three compression fractures in my spine- from a traumatic fall 12 years ago- that may not be related to osteoporosis but weaken my spine.
I cannot take biphosphanates (MD is afraid of blood clots on Reclast, and I had a reaction to Fosamax anyway), and have tried Forteo several times, but the increased heart rate and shortness of breath happen even with a 10% dose. I saw an immunologist to try to get on Forteo with no luck. SERMS have a blood clot risk so with atrial fibrillation, no one wants me to try one. Plus, Prolia affects the immune system. They did research on this, because the fight against cancer requires a strong immune system, and cleared it, but still, I am nervous. Plus I had an autoimmune reaction to my cancer, in my brain, that affected vision. I don't want to mess with my immune system.
Tamoxifen is a SERM and would be better for bones, but my Oncologist doesn't want me to go onto it due to blood clot risk with my afib.
I feel between a rock and a hard place.
My oncologist hasn't mentioned the Breast Cancer Index but I am going to ask about it. I don't know if I should even go 5 years. From what I have read, those of us with positive hormonal cancer scores, don't have a reduction in risk after doing treatment with tamox or AI's. So I am nervous going off, and nervous staying on.
Anyone else in this situation?
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RE: Calcium & D-3 - Yes, do start taking it ASAP. That's what my OB/Gyn put me on in addition to walking and weight bearing exercises to get my osteopenia back to normal long BEFORE cancer & chemo. I was able to avoid all the other drugs. It took two years & dedicated daily exercise and I've never stopped taking mega doses of Citracal w/D (4 pills a day) and additional D-3 (2000mg). Unfortunately the chemo trashed my bone numbers again anyway.
I spent lots of time worrying about the Prolia and TMJ. My periodontist did extensive research to help me with the decision. There is a risk, but for me it isn't as scary as breaking a hip & being stuck in a nursing home or re-hab center. Or a fractured spine that needs extensive surgery & long term convalescence.
I do realize many dental problems are emergencies. So although my dentist said waiting 6 months after a Prolia shot for extraction was the best way, we don't always have that option. I just had as many dental issues as I could taken care of before i started and hope for the best. I've now been on Prolia 3 years (6 shots) and all my docs recommend I do another couple of years before taking a "drug holiday". From what i've read, the bones revert to the pre-drug condition in a short time, so Prolia is not a 'one & done' cure. But it's worked for me.
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Winding- you have a lot of things to consider here. The breast index test is good to do if you can. My MO wanted to but not enough residual tumor to do the test. That will tell you five vs. 10 year benefits.
Did you get an Oncotype done with your dx? You were early stage and if there is no node involvement, they often do that to assess some benefits to do adjuvent treatment, based on genetics/pathology. They do it to determine chemo or not most often, but it also gives you the stats on reoccurrrence risk for your particular pathology and benefits with keeping risk lower with AIs. Mine was like 15%, and no chemo needed for me but they did recommend 5 years on the AIs. We talked about me going longer, but my MO said with my type of cancer (Luminal A which was early and slow growing), five years was all I needed. But things continue to change so be sure to ask what the best protocols are and what tests will help you to have the data for those decisions?
My MO often said to me we need to be sure that doing the AIs benefits you more than hurts you. I think that is good advice. You may need to ask your onc the same question, do the risks of these drugs outway the benefits? They all have so many contradictions with dental work, clotting, etc.
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Please do not start any supplements without checking with your PCP or MO first, and also your pharmacist. What works great for one person could be harmful to another.
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Alice - you are right of course. i should have made that more clear.
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Does anyone know how long it takes to show some improvement on Prolia? I've taken four injections over two years. My dexa scan shows a slight decline Nothing significant but no improvement. Still have osteoporosis in my femoral necks. Im exercising, taking calcium, vitamin d, I'm so discouraged and frustrated because it's always something! My MO doesn't seem overly concerned and said to give it a chance. I did read that it could take three years to see some improvement. Just wondering what others may be experiencing with their dexa numbers
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Butterfly - sorry that you're not seeing a gain. Sounds like you're doing everything right. In 3 years of Prolia shots I've gone from osteoporosis in the femoral neck to now just out of osteopenia.
I'm not hormone positive so I don't have to take Arimidex or other drugs that decrease estrogen, but I understand those really do a number on your bones. Maybe you could talk to your OB/Gyn for a second opinion since they too monitor estrogen & bone health.
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have you had your vit d & calcium levels checked by blood work? I ask because I was taking Vit D as prescribed by my GP but my levels were still way too low and now I'm on 3 months of a much higher dose and we'll see if it bumps up.
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Thanks for that tip. I get my blood work in a couple of weeks. Much appreciated. Right now I’m on 2000 vitamin d and 1250 citracal
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butterfly - it takes at least 4 injections, or two years, to normally see improvement from Prolia
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Also - my doc requires blood tests for calcium & Vit D each time before giving the Prolia shot every 6 months. So even if my blood work was OK in January, I'll have it re-done for these two things in June.
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SpecialK and MinusTwo. I guess that's why my MO said to give it a chance. I'm going to talk to my PCP about a 6 month blood work check on Vitamin D and calcium.Many thanks!
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Any thoughts on the supplement Algecal? I’m still on the fence about getting Prolia shots
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Copied below from Mr. Google. My ob/gyn put me on "Citracal" years ago. It's calcium citrate & Vit D. She said it's the supplement that is absorbed best with least stomach upsets. It maintained my level just above osteopenia for years before chemo tanked my bone. I still take a double quantity of that in addition to Prolia. Doesn't look like Algecel is anything more than another vitamin/mineral supplement.
However, calcium derived from algae is still just calcium carbonate, and it is not a new calcium supplement form. ... While all of these studies reported positive findings, none of them present compelling evidence that AlgaeCal is significantly more effective at improving bone health than other calcium supplements.Dec 19, 2018
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I am not on Prolia yet. My 50.000 IU weekly Vit D script is out. Before buying a D3 supplement I'm waiting for my next bloodwork to see if I truly am deficient. Not taking anything in 3 months time, I should be able to tell if Ok or if level drops I'll ask for another script or do the supplement. I also tried taking Caltrate and I can't do it. It gives me headaches. My blood calcium levels last couple of times are normal, almost high normal so I'm thinking that's why. The supplemental Ca is too much for me? I don't think its worth trying some other funky claim that there's something else out there that works for OS and osteopenia.
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ctm - I couldn't take Caltrate (calcium carbonate) either, but do well with Citracal (calcium citrate) - and I've been taking 4 cap per day instead of 2 for probably 15 years. I also take an additional 2000 IUs of Vit D every day. Those two things keep both of my numbers on the high side of normal. I'm thinking I'll drop back to the standard serving - 2 caps of Citracal per day, which = 630 mg Calcium and 500 IU Vit D. I take the additional Vit D since I am rarely in the sun due to previous skin cancers.
Edited to say that 1200 is the recommended calcuim for older women so maybe I won't cut back. I'll see what the doc says next month.
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