I have been on treatment now for 3 years for MBC, I have bilateral lobular her2+ with mets to my spine, ribs, hips, long bones and my peritoneum. I am stable and still on my 1st line of treatment which is Palbociclib 75mg, letrozole, denosumab and zoladex. Because of low neutrophils I am on a 6 wk cycle, 3weeks on 3 weeks off, with the denosumab being 6 weekly inline with the other treatment which I administer myself.
I’ve been seeing more on here about the Denosumab being not so good, if fact causing fractures? I thought this treatment was to strengthen the bones? I was just wondering what people’s experience was of it long term?
Thanks 🙏
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Crazycocker
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I’ve been on Xgeva for 8 years and I take Caltrate Plus daily to counteract the calcium deficiency it causes. I have had a couple of falls onto concrete recently and nothing broke. I have extensive Mets in my skull, spine, pelvis and hips and the long bones. I am quite happy to go on with injections four times a year but my GP does it for me.
Thank you and good to hear that you didn’t break anything in your recent falls. I am taking Adcal daily so I’m guessing that’s doing its thing to counterbalance? 4 times a year, that’s good, I have been on them with every cycle of palbociclib, I may ask if it can be reduced over time? Can I ask, have you always been on 4 a year?
I started off monthly then six weekly but due to covid I had only two annual visits per year to see my oncologist and last year I asked if I could go to twelve weekly and the oncologist agreed. She thought it would not make much difference as I’d had the injections for so long. And as I didn’t break my hip when I fell on it even though I have a lot of bone damage in my hip joints I’m confident that Xgeva is worth taking. I have read of all the ONJ experiences and the spontaneous breaks of the femur and I was a bit nervous but I think the extra calcium and vitamin D does help. So for the foreseeable future I plan to continue the injections.
Right back at the beginning, I was told Xgeva had been shown to be efficacious for us given at 12 weeks but it was routinely given at closer intervals. I know that there is a risk with it but the clinic I attend does monitor calcium levels and reminds us about regular dental checks. I think this might be why they haven’t seen ONJ very much, if at all. I didn’t go from monthly to quarterly- I went monthly, six weekly, eight weekly and finally quarterly.
An elderly friend has it annually for her bone density and my GP nearly fell off his chair when I had him take over the injection when I stopped going to the hospital during covid. He gives it as little as once every two years. He was amazed that we typically had it monthly!
I’d definitely discuss it with your consultant. I feel it’s a middle of the road choice especially as I’ve been having the treatment for so long.
hi CC- I am also lobular so was happy to hear how well you are doing still on first line. My MBC spread from bones into Thr liver and peritoneal area. Doing well in Cape for 5 months. I have taken xgeva quarterly once beginning 3 years ago. It was fda approved for monthly dosing but prob after 3 years you can discuss with onc about cutting back. I have had a few really hard falls and amazingly didn’t break any bones.
Hi Bettybuckets, Thank you, I am so grateful I am still getting such great results from palbo. I’ve had a couple of falls also without any breaks. I sometimes feel they treat everyone with a one size glove fits all. I didn’t get a bone density test before treatment started, and haven’t been given one since, so I’m wondering if it’s necessary to have it so often?
Great to hear your doing well on cape, long may that continue x
I have had monthly xgeva for 18 mths - must remember to ask why it’s still monthly not quarterly. My understanding was that the risk of fractures was greatest when you start to withdraw from it but maybe you other HU buddies know different.
hi bikebabe. just in case you missed it....fancydog mentions below that 'quarterly infusions of Zometa for a year' can be given while you titrate off the Xgeva to reduce the risk of fractures. just an fyi. carole XO
I'm on the same drug combination as you although palbo 100mg. Been on denosumab for 2 years, still having it every 4 weeks along with palbociclib and zoladex. I asked if the denosumab would be reduced in time but oncologist said no. I've had nuclear bone scan and bone density scan done recently and they are happy it's working as it should
I have had 2 nuclear bone scans since I was diagnosed, but I haven’t had a bone density scan. I have asked many times, but because of Covid I didn’t get one before starting treatment, so my consultant has said there isn’t much point having one as they have no base line. I would still like one done as I’m sure it would indicate if things are on track? Good luck with your treatment, so good to know it is all working as it should for you, long may that continue.
I was referred to rheumatology due to pain and stiffness in joints and they requested the bone density scan because they wanted to rule out osteoporosis. Otherwise I guess oncologist would not have bothered.
I am starting to see protocol changes re. Xgeva. I read recently about some MBC patients being given lower doses, using dosage adjustments for mets, age, and current bone density. I think patient specific dosing of anything is great. I did 2 yrs of Xgeva every month then 3 yrs of quarterly, at the 5 year mark Onc said time to stop as risk of ONJ begins to increase and longer dosing has not proven to be helpful, but you have to be titrated off it with quarterly Zometa IV infusions for a year. I had a really scary fall yesterday that I fully expected would be broken hip but no!
that’s good to know that they are being to look into dosage adjustments. I really think it needs to be done as everyone is different with different mets. So glad to hear your fall didn’t result in anything broken 🙏
I also have lobular and had extensive bone mets when first diagnosed in March, 2004, 19 years ago. I was initially on Zometa for the bone mets, quarterly, and switched to Xgeva when it first became available. I also got it mostly quarterly. I have not had problems with my bones but was recently diagnosed with osteonecrosis of the jaw (ONJ), possibly the worst side effect from these meds. I just have one spot of ONJ, behind my teeth on one side of my lower jaw. It isn't really a problem though my tongue tells me there's a rough spot. I was referred to an oral surgeon, who prescribed a mouth wash for me to use twice a day. My next appt with him is two months after my first. Until about 2-3 months ago, I had anti-estrogen meds as my treatment for the cancer. (Letrozole for almost 5 years, Faslodex for over 9 years, and Exemestane for around five years) The cancer cells mutated to triple negative (dammit!) so I'm now on Xeloda, my first chemo. I know I'm really fortunate to have done so well for so long!
19 years is incredible! You need to be studied as you must be magical. 😀 I'm blessed to be at 7 years now.
I'm sorry you're dealing with ONJ. I had ONJ about 3 years ago, after being on XGeva monthly for 3 years. I stopped taking it, and my bone mets have continued to be stable.
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