Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Jan 5, 2015 09:18AM
Hello- I am a Stage 1A bc survivor, and have been on Arimidex for almost 2 years as of this coming March (2015). I was just slightly osteopenic coming into this, but now am discovering, despite doing regular Calcium intake, high Vit D supplements and regular weight bearing exercise along with the AI meds, my bone density is continuing to get worse each year. I am concerned about where things may be in another 3 years when I am at the end of this protocol, although no one can really tell me if I will end up with osteoporosis or not before I finish the 5 years on the drug.
I visited my MO's office today for a follow up, and we discussed the possibility of doing Prolia shots, which was mentioned to me previously, in order to counteract the bone loss from the AIs. Is anyone out here doing this, have you done a year of this (two shots) and seen it slow down or stabilize your bone loss? Any side effects you have felt from the Prolia treatment?
We are going to see if my insurance will pay for this now vs. later, and what the out of pocket may be for me to see if it is even an option. I may need to make a decision on this sooner than later if they will cover it now, and I appreciate any insights from those of you who may be going down the same road.
Posts 1 - 30 (479 total)
Jan 7, 2015 03:59PM Jazzygirl wrote:
Ann- thank you for your feedback. Good to hear! Still waiting to hear if the insurance company will pay for it now vs. down the road.
Jan 20, 2015 06:23AM Jazzygirl wrote:
Hello- I got a call from the MO's office yesterday that my insurance will cover the Prolia shots, so I am going in next monday to get the first one, will do the second one this summer, and then will have my next bone density test at the end of the year. Willing to give this a try to see if it helps my bone health, as I finish the remaining 3 years on the AIs.
Will keep checking in here to report on how things are going for me in case anyone else is looking to make a decision around this too!
Jan 22, 2015 12:32AM new2bc wrote:
I too have ostopenia before starting Arimidex. I just started this drug this month switching from Tamoxifen. I am also scared about my bones. What dose of calcium and Vitamin D3 did you take a day? I also heard that Vitamin K2 and boron have some impact on calcium being absorbed. Let me know if you find out anything else as far as protecting the bones.
Jan 22, 2015 06:00AM Jazzygirl wrote:
Hi New2bc- thanks for your note. It was recommended to me to do at least 1200 mg of calcium (I do 1500 mg daily) and take a bit higher dose of Vit D, as I have always had low Vit D when measured in my annual blood work. I take 5000 mg a day, which my doctor thought was what I need to do, but you may want to ask your PCP what he or she recommends. My PCP has always been the most helpful about this stuff, but the MO's know a lot as well.
Also, I learned recently that calcium can only be absorbed in smaller amounts at a time by the body, so I think I have been doing my CA intake WRONG! I had been taking the full amount once daily, but read that the body will only take 500 mg a time. So I found some smaller doses and try to take it morning, none and night and then take the Vitamin D dose usually once with one of those. We will see if this helps.
They also recommend doing weight bearing exercise regularly which means weight lifting, walking, running, etc. as it will help to keep the bones strong. I do all that as well, but staying much more focused on doing the weight stuff now. Try to get in small walks daily if you can, good for your heart and your bones! Yoga is also supposed to be very good for you, especially the spine. My spine seems much better than my femurs with respect to bone loss. I also fine regular exercise helps me with the stiffness while on these drugs.
There is an arimidex thread here as well, and I have been on that in the past and the ladies there can tell you what is helping them there as well!
I hope this helps!
Jan 22, 2015 06:07AM Momine wrote:
Ann97, what do you mean by 6%? On the DEXA they measure mine as – 2.0, for example. Is that the same as –20%, and then if it goes to "only" –1.4% that is a 6% improvement?
Jan 22, 2015 08:15AM SpecialK wrote:
I had a total hyst/ooph nine years prior to my breast cancer diagnosis, when I was 45. I started losing density and became osteopenic, but remained relatively stable. I tried oral bisphosphonates but could not tolerate them due to reflux surgery about six years before the hyst/ooph. At that time the military hospitals did not do IV Reclast. I had a bone density done the same day as the mammogram and US that led to BC diagnosis so had an excellent baseline of where I was prior to treatment. By the time I did a DEXA after chemo and six months of Femara I had slipped right to the brink of osteoporosis. My MO started me on Prolia, and after four injections (18 months) I had regained enough density so that I measured in the normal range, not even osteopenic anymore. I have zero side effects from the injection, but I know some experience mild flu-like feelings for a couple of days. I was advised to limit dental work to the half-way point between injections - can get cleanings anytime, but anything more invasive I do on that schedule.
Jan 22, 2015 08:18AM Jazzygirl wrote:
Special K- good to hear about your success with the Prolia shots. And thanks for telling me about the flu like symptoms. I am having my first shot next Monday and don't have anything major going on early next week so if I need to be home and adjusting, I can do so.
Jan 22, 2015 08:47AM SpecialK wrote:
jazzy - good luck! Just know that it can take a couple of years to show substantive progress - it is a slow process. They will also have you continue with calcium and Vit D throughout. I don't personally know anyone who has had the flu-like SE, but they do warn you about it. Also, for anyone concerned about ONJ it is also listed as a potential SE, and a scary one, but if you look at the study info it is pretty rare. Of course, that stat is meaningless if you are the one that gets ONJ. My understanding is that it occurs most often in bone cancer patients who are given much higher doses of the drug. You will also see people on BCO who are receiving Xgeva for bone mets - this is the same drug as Prolia. My understanding is that Prolia is a 60mg dose every six months, while Xgeva is twice that dose, given monthly.
Jan 22, 2015 09:10AM dlb823 wrote:
I've been following this thread, knowing Xgeva is in my near future. Thanks so much for the information re. the difference in doses between Prolia and Xgeva, SpecialK. That's quite a difference for what sounds like the same drug! I wonder why they RX so much Xgeva, even for bone mets, when so much less Prolia made such a significant difference for you? I'll have to ask my onc about that, since I'm always interested in taking as little of or as few drugs as possible. Deanna
Jan 22, 2015 09:22AM SpecialK wrote:
dlb823 - I would imagine because it is treating different things - the Prolia injections are increasing density by slowing bone turnover, while the Xgeva is attempting to control a met that has displaced bone. Same general concept but at a different intensity? Please post what answers you get from your MO - I am curious too.
Here is some info on how drugs treat bone mets - it is at the bottom of the linked page:
Also, some study info on bisphosphonates and Xgeva:
Jan 22, 2015 09:58AM Jazzygirl wrote:
Hi ladies- the MO's office told me the same thing about Prolia and the sister drug that is used for bone mets. She said both have shown good success with managing the bone loss, depending on why.
I did hear about the dental issue too during my visit. Fortunately, I am one who has good dental health but one can never assume when something could not come up. They told me to be sure to tell my dentist next time I am for a cleaning (which will be June of this year). I think understanding the potential SE's is an important part of the decision making.
Also, my mother had osteoporosis at the end of her life in her 70 into her 80s and ended up with a broken hip and leg. So I take this all very seriously. I was surprised when I showed up in my baseline with slight osteopenia, as we are a big boned family. I have been a "dairy product offender" during most of my life and have been doing the CA suppliments and Vit D for awhile. As well as weight bearing exercise.
My MO did not think I would have bone loss, but I have and he did tell me that if there was bone loss, that Prolia might be the solution to help keep things strong at least until I am done with the 5 years. I know other women on the AI threads who did all the right things too with suppliments and exercise, and still ended up with osteoporosis. I believe some of my bone issues just relate to having a pre-disposition to osteoporosis, but don't want to find myself there here in my mid 50s. So I figure this is worth trying.
Jan 22, 2015 10:19AM SpecialK wrote:
jazzy - I have been beyond happy with Prolia - I actually sound like a cheerleader for it in some of my posts! I swear I don't own stock in the company, lol! I hope it works well for you and that you are SE free from it! On the dental front - I just time fillings and routine stuff at that half way point - my dentist is cool with it. His wife is an ovarian cancer survivor so he is knowledgeable about some of the cancer drug effects and aware that I am on Prolia. If you needed an extraction or implant in the jaw then the dental implication are more serious.
Jan 22, 2015 11:38AM ICanDoThis wrote:
You know, all, I have been on Prolia for several years, because hyperparathyroidism sent me into osteoporosis before menopause.
There is one big problem with Prolia, as opposed to foramax and the other bisphosphonates -- it wears off every six months, so if your bones are gone, you will be on these $4000 every-six-months shots for the rest of your life.
Tamoxifen, on the other hand, helps protect bones. I was on it for 3 years -- only time my bones stopped disintegrating.
Personal opinion -- and I am no doctor -- if your tumor was small and low grade, and you have bone issues, discuss with your doc what the actual percentage (as opposed to relative) that these meds give you, and find out how much he knows about these drugs.
My oncologists and I have gone around and around about this, because the standards call for an AI, and at least they won't get in trouble for prescribing "state-of-the-art."
Jan 22, 2015 05:37PM Hopeful82014 wrote:
Kay, thanks for your various links as well as the comment re: ONJ - that was reassuring.
I, too, had my bi-annual dexa scan on the same day as the mammo. that started all this, so have a good baseline. (Not such great bones, but at least I know where I stand.) It will be interesting to see what affect, if any, letrozole has on my density.
I know taxmox. is good for bones but since I KNOW how well my tumor's responded to letrozole I'm not inclined to make any changes.
Jan 23, 2015 06:27PM B123 wrote:
thank you for starting this thread! I too have to make a decision regarding bone treatment. Since arimidex for over 2 yrs, my low bck is now border osteoporosis. I'm asked to try IV reclast, but I'm hesitant from all the side effects. I asked my primary about prolix but she doesn't do it. I went to an endriconolgist, he really didn't know much about prolia. So now what? Who do I go to, what do I do?
Jan 23, 2015 07:24PM Jazzygirl wrote:
B123- talk to your MO about the Prolia, it is really a drug that is focused on cancer patients and so the other docs don't know as much it I suspect. My sister (who is a doctor and also had bc) told me to ask an endocrinologist too, but I opted out of that (sounds like it was not that helpful to you).
They told me sometimes insurance will not pay for it until you try other things first. I was told Reclast and other drugs sometimes have more SEs, but have not really talked to anyone here about that.
Jan 24, 2015 06:21AM B123 wrote:
jazzy girl, thanks! My mo doesn't do it either, everyone recommends reclast. Makes uneasy knowing I'm getting an IV fusion that I can't control and once it's in, it's in, SE and all. Prolia sounds more controlling just in case and a easier solution with good results as well. Not sure why I can not find a specialist that knows much about it?
Jan 24, 2015 07:46AM Jazzygirl wrote:
B123- Maybe a second opinion with another MO in a different practice group?
Jan 24, 2015 03:42PM Manu14 wrote:
new2bc - Your comment about vitamin K2 drew my attention because I just read about it this week. There were some studies about its role of being taken in combination with calcium, vitamin D3 and magnesium to help make it all bioavailable for bone density. The article pointed out that it needs to be vitamin K2 in MK-7 form; not MK-4 form. The MK-7 stays in the body longer while the MK-4 form leaves within a few hours. This morning I picked up Jarrow brand Vitamin K2 MK-7 in 90 mcg per soft gel and figure it can't hurt.
I just started anastrozole this last week and had a DEXA scan; but no results yet. I had very mild osteopenia in one hip six years ago; so not sure what to expect from this latest scan. Hoping it hasn't gotten too much worse, but these posts are helpful reading in case I need to consider taking something down the road. Personally I would be very leery to try reclast IV when not much seems to be known about long-term side effects. The FDA approved it in 2007. I guess if I actually had osteoporosis; then it might be worth taking a hard look at.
Jan 24, 2015 08:34PM Blessings2011 wrote:
I was dx'd with osteopenia about ten years ago when I had my first DEXA. My then-PCP wanted me on Fosamax. I refused, and made sure I got plenty of calcium, magnesium, and Vitamin D. I did not exercise at all.
Then, after BC and pre-Arimidex in 2011, I had another DEXA test, and guess what? Nothing had changed from the previous test! I hadn't gotten any worse.
After a year on Arimidex, and six months on Femara, I quit both with my MO's blessing. At my last appointment, though, she asked me to consider the twice-yearly Prolia shots. She said she knew I was a researcher, so just asked me to get back to her. I'm stalling.
I told her that weight-bearing exercises were very difficult for me to do, and she told me to forget it. She said the latest research showed the best exercises for staying fit were RESISTANCE EXERCISES! And I didn't need any special equipment to do them... I could press on the steering wheel while driving, or pull on a towel wrapped around a doorknob. Fortunately, I do have plenty of resistance bands from therapy, but have I used them? Noooooo...
I do still take calcium, magnesium, and Vitamin D, though.
Jan 24, 2015 10:40PM Manu14 wrote:
smo23915 - There are published opinions supporting the safety of taking Vitamin K2 in MK-7 form from what I've read. The first is from the Fred Hutchinson Cancer Research Center in Seattle; and the second is from the British Journal of Cancer regarding a case study in Japan. If you look at the conclusions in that study, they identify the fermented natto form of soy in a positive light as far as breast cancer.
Jan 24, 2015 11:27PM new2bc wrote:
Thanks for the warning. I am taking Life Extension super K with advanced K2 complex. I went to their website but I could not find any reference to soy. I may call them and ask if K2 is made from natto. If anyone finds out before me, let us know.
Jan 25, 2015 12:35AM smo23915 wrote:
Hopeful-Yes, when I spoke to them at MD Anderson they told me to also stay away from K2- Vitamin K2 is from Menaquinone-7 from Natto.
Manu- thanks for the studies. I think one of the concerns from the Onc at MDA was it is a supplement and you don't know enough about the ingredients.
If you want you could try the natural Natto- one serving a day. But let me warn you it taste & smells awful. I just feel safer not taking the supplement.
I was told I could have one natural serving of soy a day, but to stay away from any of the supplements with soy.
Jan 25, 2015 09:09AM new2bc wrote:
Thanks for the information you provided. How was your experience at the above facility you mentioned? Did your insurance cover all the expenses or you had to pay a lot for out of pocket? I live about four hundred miles from there and was keeping this facility in mind if my cancer comes back. Did they suggest any supplements to take to prevent recurrence? I am ER+, PR+, HER-. I am curious what they suggested for you to do after all the treatments were over. Do you still go there for check ups? I appreciate any info you can provide us.
Jan 25, 2015 09:38AM Jazzygirl wrote:
New2bc- with any supplements, do check with your MO about what is okay or not. I used to take a lot more stuff than I do now. Mostly still to a good multi-vitamin plus Calcium and Vitamin D for the bones. Some Vitamin C if I am healing from any surgery. Pro-biotics with meals to add with digestion and bowel health.
I found a supplement a couple years ago that helps with the joint stiffness that goes with the AIs called Hyaluronic acid and it puts the moisture back in your joints and skin that get sucked away with no estrogen. It was recommended by one of the local health food stores, and I mentioned it on the Arimidex thread, and someone kindly reminded me to check with my MO about it before I got going on it. I saw him about a month after I bought it, and he looked at the bottle and said it looked fine. I guess there are some things that can act like estrogen in the body you don't want to take. So always better to ask.
Outside of Calcium and Vit D, I never got any other recommendations from my cancer docs about what supplements to take or avoid. It is a good question to ask when you go in again though!
Jan 25, 2015 10:58AM smo23915 wrote:
New2bc- Going to MDA was very helpful. I went there for another opinion because my tumor was very small (2mm) and the decision to take Tamoxifen was left up to me. While there I saw the ONC, nutritionist, Pharmacist, and an integrative medicine doc. My insurance paid for all of the cost. I go there once a year and see my Onc in Michigan, every 6 months.
They also told me to be very careful of supplements so I just take Calcium, vitamin D, and a multi vitamin. I also went to the Block Center in Chicago and they told me to stay away from Iron, copper & Boron in a multi vitamin. At MDA they told me if my iron levels were low (which they were) I could take iron. I had many second opinions and they all told me no soy and no flax seed. (also Primrose oil supplements, I asked about that because it helps me with dry skin) So, every doc I have seen has told me keep my BMI low (which it is) and I am a Pilates teacher & exercise daily and was told that is a must to continue. I did decide to take Tam have been on it over 2 years and again (this year) they told me at MDA it is ok to either stay on it or stop it- up to me.
MDA suggested this site for info:http://www.mskcc.org/cancer-care/integrative-medic...