I was diagnosed with de novo metastic breast cancer about 9 months ago. I am currently on an aromatase inhibitor and Ibrance. Currently stable. I had a DEX scan and have osteopenia. My doctor wants me to go on bisphosphonate.
I have put if off while completing dental work. I have done a lot of research and I am very nervous about taking this drug because of the short and long term side effects. I am wondering if everyone is taking these drugs. I eat healthy and exercise but I'm worried that might not be enough. My primary care doctor is supportive of me taking a wait and see position. I'm afraid to take the drug but worry about the consequences if I don't. I'm 66 years old. Any experiences or insights would be appreciated.
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JEE123
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I’ve been taking Xgeva since I was diagnosed in 2015. I have to take it with 600g of calcium and 1000IU vitamin D as otherwise I’ll be calcium deficient.
Some people credit it with reducing bone Mets and bone pain. All I know is that I had pathological fractures when I was diagnosed and I was warned never to have a fall as if I broke my hip it was irreparable and my T7 was collapsing but T6/8 weren’t much better so spinal surgery was out too. Last year I had two heavy falls, one on to my pathological hip fracture and the other onto my back and skull. Although I thought I might not get up again, I did without any damage done. I don’t think I’d have been so fortunate without the Xgeva and the calcium/vitamin D. I had Xgeva monthly for several years but over the last couple of years it’s been reduced to quarterly. I have dental checks every six months and I usually try to organise that before the Xgeva injection if I’m due to have the check up within three months.
I’ve never had dental issues although we’re not able to start Xgeva until we’ve had an initial dental checkup.
I’m only on Exemestane and have been since July 2016 Inc ten months with Afinitor and monthly Xgeva injections. I know some have had problems and they feel differently to me but I have no problems with it and many of my bone Mets have healed. If I don’t take the calcium supplements though my blood test will show low calcium and that’s why it’s treated before it becomes a problem. Xgeva isn’t given so often to women with osteoporosis as a friend has it every six months but my elderly aunt has a check every two years but so far she hasn’t needed the injection. My GP says he usually only gives it once a year at most but generally every two years.
Some oncologists are happy to taper the number of annual injections off the longer you take it.
Even if you decide you don’t want it monthly maybe you could have it once or twice a year. If it’s true that it works to reduce pain and heals bone it would be a shame to focus on a rare side effect and lose any potential benefits. Regular dental checks will alert you pretty quickly if there’s anything going on with your jaw.
I've been having Zometa infusions since the start of my diagnosis around 2 and a half years ago. After 2 years I now have one every 3mnths but it was monthly before that.
I found that any bone ache that I had before was greatly improved by having the infusions and my cancer has remained stable without further progression.
This type of treatment not only helps to strengthen bones....it also creates a more hostile environment for the cancer in the process therefore reducing further spreading.
I've had no bad reactions to this treatment.
The recommendations are to drink lots of water before and after....paracetamol is usually given the first time as some people have flu like achy symptoms. First dose is usually given slower over a half hour after that it's usually 10 to 15 minutes.
I’ve been on Zometa every 3 months since 2015. It makes me tired the day after the infusion, but that’s it. Thankfully I have not needed any dental work during this time. I wouldn’t be too afraid of it. You probably need something as a bone strengthener.
In my case, the Xgeva monthly injections were delayed by a few months because of dental treatment. I was really fearful having been warned about side effects, but absolutely none! All the best
I too was terrified as my mouth is full of gaps, crowns and fillings - a hangover from 1960s dentistry and poor oral hygiene. I also had a bone infection after a tooth extraction shortly before starting metastatic breast cancer treatment (palbo Letrozole). Happy to say that I’ve been on self injected monthly denosumab (similar to bisphosphonates) for 2.5 yrs with no problems. I am scrupulous about oral hygiene - no tartar to be found in my mouth- I use a high strength fluoride toothpaste prescribed by dentist, electric brush and interdental brushes.
I was diagnosed de novo as well just over three years ago, two years no evidence of active disease. I’m on Letrozole and Palbo and had no real side effects until…I got diagnosed four or so months ago with osteoporosis in spine and osteopenia in upper femur. I was pretty upset as I’m very active but I didn’t want to take any more drugs as, like you, I was concerned about side effects. My T score is quite high as well and last week I had a spectacular fall on way (ironically) to get my three monthly scan, so spent first bit getting my elbow, shoulder and wrist scanned to see if fractured. I was in horrific pain and even if healthy, I think a breakage was likely but guess what?! No fractures and I have just finished a yoga class. Not quite on my usual form and still can’t put pressure and properly move my elbow but I’m hopeful I will fine in a bit. My onc even joked and said maybe my bones are stronger than they thought!
I need to up my resistance training which is great for osteoporosis (but not my fave!) and I take a lot of supplements already but have introduced calcium (from algae though as most calcium creates oxidative stress which is not good for cancer) and increased vit D and K2 and magnesium. I have also intro’d more dairy into my diet which has been hard to be honest (I’m veggie and was vegan) and also want to have a REMS scan to see what that says.
Whether not taking meds is right or wrong decision only time will tell and after other scans, I will review of course. Do check out the osteoporosis section of Health Unlocked as that is a great source of intel and, of course, I wish you very well ☺️
My experience with biophosphonates has been all positive. I have been on all of them over the past 20 years, off and on, and have had no side effects. Right now I am back on Zometa (just had second infusion after having 6 annual infusions from 2006-11) and I am still doing just fine. The osteoporosis in my body is due to the cancer treatments I have been on since 2001. I consulted with my endocrinologist, oncologist, GP, and my physician daughter. They all were supportive of going forward again with the Zometa. After watching my mom crumble in old age due to her weakened bones, it was an easy choice for me. My doc wants to stop after 2-3 infusions and reevaluate because the most severe side effects don’t show up until after several doses.
I think we so often only hear the horror stories about these drugs and rarely the good outcomes. But only you can decide what is best for your body. I wish you the very best in making this difficult decision. It is a hard choice but stepping back and seeing what is right for my own individual situation gives me peace. I hope the same for you.
My onc recommended taking Xgeva in 2016, after my BC recurred with a small metastatic spot in the bone. I declined a bone strengthening drug at that time due to fear of the side effects. Instead, I did all sorts of natural treatments to strengthen my bones like exercise, cucumber seed powder and prunes. None of it worked and my bone density continued to drop from osteopenia into osteoporosis. There had been conflicting opinions between endocrinology and oncology and no one explained to me how cancer in the bone hijacks both the osteoclasts (cells that break down bone) and the osteoblasts (cells that build up bone). If you are on an estrogen blocking treatment, the lack of estrogen combined with the cancer warfare in the bone will overpower your ability to build up new bone without assistance. The cancer sends signals to the osteoclasts telling them to break down the bone faster. Then, the cancer also sends a signal to the osteoblasts and disables them from building up new bone. After I had a second recurrence on a different bone, I was finally ready to take a bone strengthening drug. I’m currently on Zometa which treats both osteoporosis and bone metastasis. The bone met has been stable for a year and the osteoporosis has improved. I immediately felt better after starting the Zometa infusions and get them every three months. My body likes it and I feel stronger now, because of the Zometa.
My first bone met healed on its own with only Letrozole as a daily AI and Lupron monthly injections to make me post menopausal. I was NEAD for five years before the second bone met occurred. It’s possible that I might have remained NEAD and not had the second bone met, if I’d started the Zometa sooner. There’s a life time maximum for safety with these bone strengthening agents. I’ve been living with MBC for seven years now and don’t regret delaying on the bone strengthening drug. However, knowing what I now know, I wouldn’t recommend a delay to anyone else.
We all have our own path to follow and I wish you the best of luck with yours!
Good morning, I made the decision not to take Xgeva when first diagnosed two years ago. Dexa showed strong bones at the time and after initial surgery to put rod in leg, the femur (which was as close as a bone can be to breaking) built up new bone quickly. I also have several dental implants and an impacted childhood tooth so the odds were against me for ONJ. I did just have to get a small spot zapped on my other femur so my plan is to get another Dexa in early 24 to see if there has been any changes to density. We continue to monitor calcium in blood and it remains normal. Continue to play this one by ear. But I do take D3 and do uphill treadmill walking several days a week, sauna, and try to do a high protein diet.
I’ve been on them for 6 years without any major problems. First 3 on Xgeva and last 3 on Zoltronic Acid which may be Zometa. First 2 infusions of Zoltronic acid, flu like symptoms. Then after that, not so bad at all. Take Tylenol before and after. I think dental work is ok unless it’s jaw surgery. Caps and root canals ok. Also I do Y4C (yoga for cancer) to strengthen my bones.
I have been on i brance , Lexatrole, and xgeva for 2 and half years and this past summer had to have 2 teeth pulled and now probably need another, so oncologist just took me off Xgeva, do to it probably being the dental culprit, i would wait and see if i were you, and follow your intuition, i know the fear can be over whelming, but do what you think is best for YOU , i changed my I Brance to 5 days on 2 days off, after reading an article on it, i am a Nurse and the absorption made more sense to me physiology wise that way, and my Oncologist went along with it, my last PET, scan a month ago, was status quo, so all good❤️ Contact me any time ❤️
I was on Ibrance for 3+ years until it stopped working. I convinced my onc to let me do a 5/2 dosing schedule rather than the 21/7 as is recommended. That schedule kept my neutrophils at an acceptable level so I was in less danger of infection. The only real side effect I had was loss of taste, specifically sweet. That really affected the taste of (obviously) fruit, but also veggies, milk - anything with natural sugars. It was a bummer but it could have been worse. Savory foods were okay so at least I could taste my dinner. Other than that, I felt okay on Ibrance and suffered no long term effects. When I went off the drug, my taste came back within a month.
I also meant to mention I did have a minor surgical procedure - replacement of my pacemaker battery - and onc took me off Ibrance for, I think, 10 days - 3 before surgery and 7 after just to ensure an extra boost in healing. Again, no problems anywhere.
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