Nov 18, 2016 07:44AM cp418 wrote:
Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong
Posted on: Nov 17, 2016 06:27PM
I started taking Arimedex November first and so far/so good.I met with my new medical oncologist this week and I'm having some doubts about both her and her recommendations. She informed me my DX scan revealed osteoporosis (Femoral neck -2.9) so she directed me to start Prolia infusions after being cleared by my dentist. I have a history of problematic teeth and have had major dental work. I'm wondering if Prolia is the best choice (vs. Boniva, etc) given its s/e issues. I am also feeling like she didn't provide more lifestyle recommendations in addition to the medication. When asked about diet (for breast cancer in general and osteoporosis) she just shrugged it off saying there wasn't enough good research to make specific recommendations. She didn't get off off her chair to examine me (the nurse took vitals) and she asked a few questions, reviewed the DEX scan results and then just handed me an information sheet for the Prolia and that was it.
I'm seriously thinking about getting a second opinion from an endocrinologist who might take a stronger interest in how the arimedex and Prolia could impact my blood sugar and thyroid since I'm borderline Type 2 diabetic and in remission from Graves Disease. I'm also wondering f they would recommend Prolia first.
I also thought the medical oncologist would be more of a resource regarding vitamins, diet, etc. She never brought up Vitamin D and I see that many here are prescribed fairly high dosages by their oncologists.
Is my experience typical or are some of you getting more medical attention/information/support?
Hope you're all doing well!
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Nov 18, 2016 07:44AM cp418 wrote:
Nov 18, 2016 09:59AM muska wrote:
Hi Marcella, the link above has important information about Prolia. One of the reasons why oncologists prefer Prolia to other osteoporosis drugs nowadays, is because there is some benefit in reducing risk of bone metastasis. Unfortunately, lifestyle and diet changes are not efficient enough once one has reached osteoporosis and is taking an AI drug.
That being said, I think you should certainly get a second opinion and check with your endocrinologist - because you have other conditions that Prolia might or might not interfere with. If you and your docs agree that Prolia is the best course of action, they will check your blood before the injections to make sure you have good levels of calcium, magnesium and phosphorus amongst other things.
I was prescribed Prolia after 2.5 years on AI and increasing osteopenia. I take VitD but no calcium. I was advised on dietary changes to increase consumption of foods reach in calcium. My MO does blood workup on me every six months and it includes CBC, basic metabolic profile, two tumor markers and now magnesium and phosphorus. They also check my vit D once a year. Keep in mind that I am stage 3 and high risk, so they probably follow me a bit closer than someone who is stage 1 for example.
Speaking of dental work, I have had very bad teeth all my life and need dental work constantly. The horrifying jaw side effects that are often mentioned, are extremely rare to begin with and happen mostly with Xgeva prescribed to stage IV patients - same denozumab but 120 mg monthly vs 60 mg every six months with Prolia. You can do regular dental work while on Prolia but it is recommended to avoid procedures on the bone like implants, for example. I think if you do need a major dental procedure involving bone you can schedule it closer to the end of the six month cycle and dentists make take some precautions to minimize the risk. I just had two fillings done last week and two teeth prepared for crowns this week - these are totally fine to do at any time.
Nov 18, 2016 12:54PM Hopeful82014 wrote:FWIW - Zometa works differently from Prolia but also shows reduction in bone metastases.
Jan 26, 2017 12:30AM Mariangel43 wrote:
Marcella, how everything's going? You are lucky that your doc prescribed you Prolia, The majority of oncologists prescribe biophosphonades which are linked to necrosis of bones and in certain conditions, to bone cancer. Keep on looking for information. I have moderate osteoporosis and my oncologist told me he wanted to use a biophosphonade. I told him I have problems with teeth and that I would be able after I finish an expensive treatment of my teeth. Meanwhile I use sesame seeds which are rich in calcium, drink almond milk and try to follow a vegetarian diet low in sodium and potassium and high in vitamins.
The problem with Prolia is that some health insurance plans do not cover it because it is expensive. I ask my doc about it and I hope I will get lucky too.
Jan 26, 2017 07:38AM - edited Jan 26, 2017 07:40AM by muska
I just had my second infusion of Prolia on Tuesday. All good so far, didn't notice it.
My insurance plan changed in January, so I had to go through a new approval process. It is my understanding that most private insurance plans in the US cover Prolia for women who had breast cancer, are on AI and have increased osteopenia while on AI. They do require a pre-approval before covering the drug but if you fall under this condition, the approval is easy and quick. I was shipped Prolia in self-injectable syringe. I took it to my hospital clinic to be injected but I think i might do it myself next time. The nurse recommended I do it myself if the insurance agrees to it (will call them in a couple of months.) The medication cost was covered 100% by pharmacy coverage.
Jan 26, 2017 10:52PM MarcellaPa wrote:
Thanks for checking in and providing some helpful direction. I appreciate it!
I switched medical oncologists since the MO I saw seemed not very interested in providing more individualized advice on the timing of starting the Prolia given my dental status which sounds like yours and the need for 2 knee replacements this year. My new MO, who is MD, PhD and has done research on the drugs we're considering, gave me the go ahead to get all my dental work and knee surgeries done first before I start the Prolia. He explained that although the anastrozole is linked with bone thinning, it isn't immediate but rather occurs over time. He felt I could delay the Prolia until I had the dental work and knee surgeries and then do a second DEXA to monitor my osteoporosis. I was super relieved. It truly pays to seek a different opinion and switch providers if need be.
I'm going to go pick up some almond milk and sesame seeds also and add them to my calcium and Vitamin D supplements.
Thanks again and I hope you're doing well!
Jan 26, 2017 11:17PM ChiSandy wrote:
I wanted Prolia—my baseline DexaScan done just before starting radiation and two months before starting my AI (letrozole) showed moderate osteopenia. But when the time came, my MO said that my Medicare Part B supplement carrier denied it because it wasn’t a “treatment” but rather an “injectable drug;” and my Part D carrier refused to authorize it because of price. I can’t take oral bisphosphonates because I have GERD (hiatal hernia). So my MO had me do an infusion of the I.V. bisphosphonate Zometa (aka Reclast). Because it was administered I.V. in the chemo suite, Part B considered it a “treatment” and covered it.
Never again. Because I can use only my left arm for needle sticks, they had to try 5 times (even with the infrared Accu-Vein lamp) before they could get a good vein; it hurt like hell with every pulse of the pump; and I was sick as a dog with “faux-flu” for several days. I had bone and muscle aches (the bone pain was lessened by switching my antihistamine from Zyrtec to Claritin), high (102+) fevers and foot neuropathy so painful I had to take Lyrica.
When I told my PCP, he hit the ceiling. He said that bisphosphonates (oral or I.V.) protect against only spinal fractures, not long bone fractures. In fact a rare side effect of Zometa can be atypical “paradoxical” horizontal fractures of the femur (that’s right—the thighbone snaps in two) without any precipitating trauma. Moreover, though both Zometa & Prolia protect against &/or delay progression of bone mets, Prolia is more effective. Most of the other side effects are more common with Zometa; only the risk of infection is higher with Prolia because it’s a biologic. But if you have a good immune system and are very careful, you probably won’t get those infections (and if you do, they can be treated with powerful antibiotics or antivirals). Yes, Prolia costs more—list price is $5K per shot. But with a GoodRx coupon, it costs anywhere from $900-1200 depending on where you buy it. And the insurance companies are being short-sighted. I got my BCBS Part B EOB last week—and that Zometa infusion was $3800 for the drug alone; adding the bloodwork, chemo suite fee and nurse & phlebotomy services brought the bill up to $5K!
And an AI alone can raise your LDL cholesterol, glucose and a1c. Welcome to the stage of life where you can’t fix one thing without breaking something else, and fixing that breaks yet another thing, and...
Feb 6, 2017 12:29PM crazy4carrots wrote:
Sandy -- I've been on Prolia for the past 3 years. After just 6 months, my dexa scan showed no sign of osteoporosis (before starting it, I had mild osteoporosis in my right thigh caused, they believe from 5 years of letrozole).
Here in Ontario, the cost per shot is $400, but my supplemental health insurance pays 80%.
Stay far, far away from the bisphosphonates! I know of several examples (women I know personally) who suffered broken femurs and each one of the surgeons blamed the fracture on the horrible stuff. It should be taken off the market, IMHO.
Feb 6, 2017 09:20PM Spookiesmom wrote:
My most recent DEXA showed I slid into osteoporosis after 4 years of aramidex. My PCP wrote, and I picked up the rx for fosomax. Then I read the 6 pages of warnings that came with it. Scared me to pieces. Jaw necrosis. That it can CAUSE fractures. Plus a lot of things that could affect me from my other issues.
Then I looked at Prolia. That scared me more!! If I read correctly it doesn't play nice with most chemo if your cancer reoccurred. And that's assuming insurance will pay for it.
So I had appt. with PCP today, and I'm not going to take the pill or infusion. He said the best thing to do was walk.
I do take 1200 calcium and 5000 D3 daily.
Feb 7, 2017 07:40AM muska wrote:
What convinced me to start Prolia, is the study that showed reduction in bone mets in post-menopausal women who take AIs: http://www.breastcancer.org/research-news/prolia-reduces-recurrence-risk-for-some
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