Zometa vs Xgeva

[Aimee95]

Hello everyone! I have not posted in a very long time. I had bone density test and the Letrozole has wreaked havoc on my bones. So I'm going to start bone strengthening injections-it will either be Zometa or Xgeva. I'm just wondering what anyone's experiences been with either of these drugs. As always I appreciate all of your help and expertise! Aimee

[Wintervt]

Hi Aimee,

I've received an injection of Xgeva every 3 months since March 2018. My last scan showed areas of healing in my bones.

Best,

Jade

[Lap68]

Hi Aimee. I started Xgeva every 28 days since diagnosis. It helped my bones immensely.

Lisa

[Barbteeth]

Hi Aimee

I have xgeva every month...painless and of benefit

Just wondering why you weren’t automatically prescribed this treatment

Barb xx

[Aimee95 in reply to Barbteeth]

That's a very good question.....especially since it's in my rib.

[MacroMom]

Hi Aimee. When I was diagnosed with "innumerable" bone metastases in 2017 I researched both Denosumab (Xgeva) and Zoledronic Acid (Zometa). All the studies I found showed Xgeva to be superior in preventing SRE's (Skeletal Related Events...what a term!) My insurance company initially denied Xgeva (probably because it's more expensive) but I appealed twice and was able to get it approved. I've had Xgeva shots every 2 or 3 months since Oct 2017 with no side effects, no bone pain and stability in all the bone mets. If you have a choice I'd recommend Xgeva. I was on Letrozole for about 15 months during that time too.

Wishing you well!

Patty

[Hidden]

I had a Zometa IV last month with my chemo and I was so sick. It was my first chemo and Zometa so I didn’t know which caused the problem until I had chemo again this week. It was definitely the Zometa. I did read one reply that said they only had that the first time. I am schedule to have mine again in August and if I feel as sick as I did before I will ask to be switched. I do tend to get so many side effects so I’m not always the best judge of things. Lol.

[MacroMom in reply to Hidden]

I've been getting Xeloda for 2 1/2 years now and the only time I had a reaction...muscle/joint pain and belly discomfort...was last month when I got it the same day as my chemo. Next time I'm going to ask to get it separately, even though it means an extra trip to the hospital. Thinking it may be better to let my body deal with one bunch of side effects at a time!

Patty

[Hidden]

Hi Aimee,

I'm sorry to hear that your bones have suffered. I have been having zometa infusions every 12 weeks since June 2018. I've experienced some joint issues afterwards (one occasion, I think) but other than that I get on well with zometa. Hopefully it will be the same for you too with either zometa or xgeva.

Sophie

[PJBinMI]

I'm a long timer with bone mets (16 years) and have been on both Zometa and Xgeva. Xgeva was not yet around when I was first diagnosed, with denovo bone mets, "extensive" in several L and T vertebrae, pelvis, scapula and a rib. When I started treatment, the incidence of ONJ (osteonecrosis of the jaw, bone death usually in the lower jaw) was not yet known and most of us were given Zometa via IV every four weeks. Turned out I was allergic, so got a half dose with premeds of benedryl and hydrocortison, and 2 hour infusion time. For me, the first 2 to 4 infusions were the worst, with extreme fatigue the day of and day after treatment and fluish symptoms. But after a few treatments, that stopped. Later, when I was off of it, I realized it had caused some joint pain, not bad pain, closer to discomfort that pain. It was the San Antonio BC Symposium in December 2004, when info about the incidence of ONJ became well known, and after that my Zometa treatments were spread out, first to every other month and then every 3 or 4 months, until Xgeva became FDA approved. It is an injection rather than an IV so while the med itself costs more than Zometa, giving it costs less. When Xgeva was first approved, it was reported to have a slightly less incidence of ONJ--I forget the exact numbers compared to Zometa. After a few years on it, I needed a break of a few years and I don't remember exactly why but my bones have done well. I've had little bone pain and have only had two progressions needing changes of meds in the 16 years I've had mbc. (almost five years on Letrozole, over 9 on Faslodex and now a bit over 2 on exemestane).

I suspect that in the long run it won't matter much which bone med you are on. Xgeva is certainly easier to receive. I started rather enjoying the time in the infusion room getting to talk with other cancer patients when I was getting Zometa, but most only need about a 20 minute infusion time and not the 2 hours I did.

[Hidden in reply to PJBinMI]

Your journey is very encouraging .

[AuntC]

I was on Zometa for three infusions. The first two I had chills, fever, body ache & a rash for about 2 days. And the third one put me in bed for almost two weeks. I will be starting Xgeva next month. I now know which ever one you get make sure you're very hydrated. You might also ask about taking a Tylenol before & after treatment.

I wish the best for you,

Carolyn

[Teddielottie]

I have been wondering if I should start on a biphosphonate soon ... been putting it off for a year or so (after my Dexa scan came back ok at the time ) and the professor onc I saw ,when mine was on leave ,didn’t say it was immediately required given my stable low volume mets . So I decided to wait a bit longer ! As I have been on Letrozole for a further year now , I am wondering if to address it ? Will be having my next phone appointment with my onc in August ,so will raise it then . I was thinking if I could have a further Dexa scan , it would show any deterioration eg due to continued Letrozole use , but not sure if that is allowed here on the NHS , as my previous one was around 16 months ago ?!

I haven’t seen ladies on here ,who have bone mets , but who are not on Zometa / xgeva / other biphosphonates , so wondering maybe I should now reconsider?

But glad you have tolerated Zometa .

Take care and keep enjoying the views! x 😘

[Hidden in reply to Teddielottie]

Hi Teddie,

I was put on zometa within days of starting zoladex and letrozole. Like you, I have low volume bone metastases (two small spots in my thoracic and lumbar spine). Everything has been stable since my first post-diagnosis CT scan. Did you refuse a bisphosphonate or is that what your oncologist recommended? It's worth considering the pros and cons before you decide what to do, and asking for your oncologist's advice on what's best for you.

Sophie

[Teddielottie in reply to Hidden]

I asked for a Dexa scan ,being post menopausal , which my onc arranged , but the results were reasonable, at that time . I saw another onc ( professor) in my oncs leave of absence , and he left it to me to decide at that time . I then started on the Adcal ( calcium / vitamin D ) , and started taking a glucosamine daily tablet ( plant based ones) for stiff joints from Letrozole , and still take those . And hopefully my cycling helps too ! He did do me a prescription though for an oral biphosphonate , which I did pick up via my GP , but then I decided to put it off for the time being , and only now , having read that other ladies are taking it , am having a rethink . I won’t see my onc ( virtually ) till mid August , but wondered what others ,in the same boat ,might be doing . I know there is one other lady on here who stopped taking it , because of side effects . My low vol mets to my pelvis (ilium / pubic ?) have been stable for over 2 years , with a last ct scan late March ,but I am now thinking about whether it would be beneficial the longer I am on Letrozole .

Thanks Sophie for your thoughts . Take care ! x 😘

[Hidden in reply to Teddielottie]

You're welcome, Teddie! I take Adcal D3 too, along with a vitamin D +K2 spray for better absorption. I want to ensure my bones stay strong. Letrozole can cause bone density loss over time, which is why bisphosphonates such as zometa and xgeva are often added. They can also help with bone metastases. But my understanding is that they will not cure the damage already done to the bones.

Take care,

Sophie x

[Teddielottie in reply to Hidden]

Thanks Sophie , what dose of Adcal are you on ? x

[Hidden in reply to Teddielottie]

I take 4 caplets each day. Each caplet contains 750mg calcium carbonate (300mg calcium) and 200 I.U. (5mcg vitamin D3). I used to take two of the chewable tablets, but I stopped taking those, as they contain soya, and I tried to avoid soya as much as I can, unless it's in pure form.

[Teddielottie in reply to Hidden]

Yes we’re on same caplets / same dose ! My glucosamine I buy from Amazon ( Natures Well Vegan Glucosomine 750mg )but I did ask my onc if I could take these and she said yes . But I haven’t checked if I can get them on prescription/ NHS ?!

[Hidden in reply to Teddielottie]

I think it's well worth asking! It's pretty handy being able to get free prescriptions before I am in my 60s! As a friend once said: "I had to get cancer to receive free prescriptions!" Now I feel the same way. So if it's available for free I will take it, as I pay enough for my other supplements and off-label drugs. I'm so glad I found out about the NHS exemption certificate after I was diagnosed. I know NHS prescriptions aren't very expensive for us in England, but it all adds up when you are going to be taking these drugs long term. Hopefully we will follow the rest of the UK soon and abolish prescription charges altogether.

[Teddielottie in reply to Hidden]

I prefer to take the plant based glucosamine , ie., not the fish ones !(being vegetarian, though I eat dairy ) .

When I was first diagnosed de novo , I was given an info pack and it contained details of how to get the exemption certificate and a free parking card for my hospital car parks ! Think the only benefits!! x

[Hidden in reply to Teddielottie]

I'm not taking glucosamine, but I do take a vegan omega 3 supplement. I can't stand fish, so I wouldn't be able to stomach the fishy varieties on the market.

[Teddielottie in reply to Hidden]

Are they for stiff joints caused by Letrozole ?

[Hidden in reply to Teddielottie]

I started taking them before my diagnosis, but have continued. It can help with stiff joints. I also try to make sure I have enough of everything else: selenium (stopped the supplement and am now eating three Brazil nuts each day), all the B vitamins, niacin and so on, as I was deficient a while ago.

[Hidden in reply to Teddielottie]

I don't eat fish, so that's why I started taking the omega 3, as I was deficient.

[Bestbird]

You ask an excellent question! Below from my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available as a complimentary .pdf, is information comparing Xgeva with Zometa. For information about approved MBC treatments and coping with side effects, please visit: insidersguidembc.com/about

As an aside, Xgeva is an injection whereas Zometa is given by infusion.

In a Phase 3 study of MBC patients with bone metastasis, Xgeva was shown to be superior to Zometa in preventing Skeletal Related Events (SREs) such as fractures or the need for radiotherapy. Xgeva prolonged the time to first radiation to bone by 26%, and also prolonged the time to first SRE, or hypercalcemia of malignancy, by 18%. Another study revealed that after 2 years, Xgeva improved bone density by 66% more than Zometa. Notably, 10% or more patients had a clinically meaningful improvement in Health-Related Quality of Life with Xgeva as compared to Zometa.

From: clincancerres.aacrjournals.... and medivizor.com/view_article/...

[illini9 in reply to Bestbird]

I had no idea there was such evidence of the effectiveness of xgeva. thanks so much for sharing this.

[illini9]

Hi Aimee, I've been on xgeva monthly since December 2015. Haven't noticed any side effects from it alone. I have asked my doctor a couple times about studies that show a three month schedule as effective as every month but she's been hesitant to change something that's working. I don't find the shot objectionable. As long as the nurse puts it in slow that lessens the sting and the whole thing only takes 10-15 seconds.