Xgeva: I’ve been on zometa for 4 years... - SHARE Metastatic ...

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Xgeva

Buffwright profile image
29 Replies

I’ve been on zometa for 4 years and am switching to Xgeva. Will I have some time before any side effects begin? (I want to visit someone on my way home)

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Buffwright profile image
Buffwright
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29 Replies

Hi Buffwright,

I don't have any experience/knowledge re: Xgeva, but I'm wondering why you changed? I've been on zometa for 5 years...are there downsides? Is Xgeva better in some way? Thanks!

Buffwright profile image
Buffwright in reply to

Hi Lynn, after almost 4 years, I’ve had some cancer recurrence—hip and T1 (and two other sites) while on Zometa, Ibrance and Letrozole, so I’m changing to Afinitor and Aromasin and doc is also changing to Xgeva given the bone Mets. The good news is that the old sites were disappeared! I’m hoping Xgeva is as easy as Zometa was.

Barbteeth profile image
Barbteeth in reply to Buffwright

I’ve been on Afinitor and aromasin since January

Also have monthly denosumab (xgeva) no effects with the xgeva

Barb xx

SeattleMom profile image
SeattleMom in reply to Barbteeth

Hey, Barb!

Do you get Xgeva injection EVERY MONTH? My doc switched to a 3-month regimen, as she said you run the risk of making the bones too brittle. Has your onc ever discussed this?

Hope you are dealing well with this crazy crisis. Seattle has literally shut down.

Love and prayers to you, Linda XO

Barbteeth profile image
Barbteeth in reply to SeattleMom

Hi Linda

Yes I get it every month...never been told about brittle bones...I have extensive bone mets though maybe that’s why?... have to trust our oncologists though

Barb xx

SeattleMom profile image
SeattleMom in reply to Barbteeth

Yes!! ❤️🙏🏻❤️

in reply to Buffwright

Thanks, Buffwright, for the response. It's interesting that they changed out the Zometa, too....I'd not heard of that, but I guess it makes sense! :)

Buffwright profile image
Buffwright in reply to

I think because Xgeva does more than prevent calcium leeching....And Zometa (With Ibrance and Letrozole) didn’t prevent the new cancer spot from forming. that’s all I understand!

in reply to Buffwright

Very interesting! I'll do some research/bring this up with my doc! p.s. this is why I love this site! :)

Buffwright profile image
Buffwright in reply to

I had a new occurrence of a spot on my hip. I was changing from Ibrance and Letrozole to Afinitor and exemestane and changed to Xgeva at the same time. Xgeva does a bit more than Zometa to deal with the cancer. My understanding is that zometa’s Main effect was to prevent calcium from leeching from my bones as a side effect of the other treatments.

So far, no new side effects!

Maludagui profile image
Maludagui

Hi. Xgeva is working for me. I haven’t second effects

Buffwright profile image
Buffwright in reply to Maludagui

Great! Thanks! I start tomorrow!

Maludagui profile image
Maludagui in reply to Buffwright

I used xgeva for 18 month

Buffwright profile image
Buffwright in reply to Maludagui

Good to know. It helped?

Rhwright12 profile image
Rhwright12

XGeva is newer and slightly better but if u do have side effects u can always switch back...😀

NShaft profile image
NShaft

I've been on monthly Xgeva for over a year and don't think I feel any side effects other than some slight soreness in my arm for a day or two. Be sure they warm it up before the injection and I always tell them to go as slow as possible.

SeattleMom profile image
SeattleMom in reply to NShaft

Hello!

My Xgeva shot is always administered to the "tummy fat." Absolutely no soreness ever. Ask the nurse about this!

XO Linda

Buffwright profile image
Buffwright in reply to SeattleMom

She offered that but it sounded awful! So far my arm is ok!

I have mets to the lungs. About 4-5 months ago they found two holes in my spine from the breast cancer and an injection of Xgeva was added to my two falsodex injections. I was also advised by my onco to take daily supplements of calcium to make my bone stronger. Xgeva is done to strengthen the bones. I find absolutely NO Side effects at all, notice no difference. The falsodex injections never hurt me and I can sit immediately after. The only side effect I get is about the first few days afterward, my butt is itchy. But not one noticeable side effect at all.

"A study has found that Xgeva (chemical name: denosumab), a targeted therapy medicine, is better than Zometa at reducing the risk of a skeletal-related event in women diagnosed with metastatic breast cancer that has spread to the bones. The study also found Xgeva improved quality of life more than Zometa" (posted by Breast Cancer organization on an article about Xgeva vs. Zometa for MBC patients.)

The xgeva injection is given to me in my arm. I get my blood taken every month so it is no more than another needle injection given in my arm. No side effects at all and its been about five months now I think of getting this added injection.

Buffwright profile image
Buffwright in reply to

Thanks! I really should take calcium. I drink lots of milk (or at least, lots of lattes!) and eat cheese and yogurt....

in reply to Buffwright

I never took any supplements in my life and I just turned 60 in January. Even when diagnosed with MBC. It was not until they found the cancer (which is in my lungs) made some holes in my spine that my onco, in addition to the xvega injection, told me to buy calcium supplements to strengthen my bones. First time ever. Thank God I had bought three big bottles. So I do not want fractures and my bones breaking so I take the calcium supplements every day and I have three large bottles. But like you said, drinking more milk, cheese will do just as well. I hate milk so dont drink it nor do I eat cheese alot.

Plus my small family owned pharmacy had all my drugs. I picked up six rxs the other day. SIX. I was so scared that they would be out of them.

I also ordered online a refill for my Verzenio and I got it delivered via fed ex in two days so I am stocked on that.

Soon, I expect the mail and deliveries to slow down considerably and the trains and buses as we are like a war zone (Gov. words) bc it is getting out of control. Thus, they basically want us in shut down mode bc the Gov. said we are worse than China was in how quickly it is spreading. China was smart. They IMMEDIATELY put their people in shut down mode. Italy waited a bit too long. Italy even warned the US do it sooner than later.

Buffwright profile image
Buffwright in reply to

My first Afinitor was to arrive on Saturday, but was held til Monday. Fortunately I didn’t need it til then. But it’s a lesson. Reorder early!

Breathe ( with appropriate social distance)!! (And wash hands). One day at a time.

Thrifty51 profile image
Thrifty51

I have been getting Xgeva shots for 12 months but they have recently been spaced to every 3 months. I have never had any side effects. I hope you don't as well.

Best,

Audrey

in reply to Thrifty51

Wow. I get them every single month when I get my falsodex. I didn't know some people got it every three months. I wonder if it is a stronger dose.

in reply to

I think that after about a year of monthly injections, they switch to every three months or so. At least with Zometa. My understanding is that this was to reduce the risk of weakening the bones, but from what i'm reading here, this is not an issue w/ Xgeva? Or maybe it's just less of an issue...

I know someone who did monthly on Zometa for too long (sort of an administrative error) and as a result has bone fractures, e.g. in her feet, that cannot heal. I understand that it's a nightmare, e.g. very painful.

Southside25 profile image
Southside25

I've been on letrozole and Ibrance (originally 125 then 100 then to 75 for the past year) and Xgeva every 3 months for mets to spine. I've had common side effects (hair loss, some GI issue which are resolved with extra magnesium supplements, stiffness). Don't think I've had any SEs specifically related to the Xgeva. By the way, after 2 years on this therapy, no evidence of active cancer. Bone mets are gone, I'm assuming due to the Xgeva.

Buffwright profile image
Buffwright in reply to Southside25

Good to know about your bone Mets disappearing. My initial femur Mets disappeared due to Ibrance and Letrozole. Now it’s in one hip. Doc decided to switch everything out including Zometa (which I understand was about stopping calcium from leeching out vs the mets). Hoping for the best. It’s a new day and I’m sleeping better too!

Thatflowerlady profile image
Thatflowerlady

I have been on xgeva for 5 years and have not had any problems with it . I maybe be switching to Zometa in the next few months .

Luann from Ontario Canada

Buffwright profile image
Buffwright

I didn’t have any problems with Zometa. They told me I might have flu like symptoms the day after—it was a good excuse to take the day off. I never experienced SE.

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