Question about xgiva

[Zebra2018]

Hi wonderful ladies, I hope everyone had a nice and warm holiday season. I started getting xgiva shuts December of 2018 and I thought after a year I will receive a shut every three months instead of every 28 days! However my onc says I have to continue to get every 28 day for at one more year, I have Mets to my neck and it is stable and CT scan did not show new disease. Has anyone continued to get xgiva shut for more than a year?

Thank you

Sima

[Nannymop]

Hi yes still having my shot every 28 days for just over 2 years x

[Zebra2018 in reply to Nannymop]

Thank you, so it is not unusual to have it for more than a year

[Boogitymom]

I’ve been getting xgeva shots for almost 4 years

[Barbteeth]

I’ve had monthly shits for 18 months...why don’t you think that’s normal?

Barb xx

[hopenowandtomorrow in reply to Barbteeth]

😂

[Nmartinez15 in reply to hopenowandtomorrow]

I was laughing too

[Valisa in reply to Barbteeth]

Thanks for my morning chuckle🤣

[hdhonda in reply to Barbteeth]

🤭

[hdhonda in reply to Barbteeth]

Read my reply to you and Zebra. You both brightened everyone's day with your typos. Blessings Hannah

[Reallyno in reply to Barbteeth]

I needed that little chuckle, thank you☺😊

[Mets1 in reply to Barbteeth]

Too funny!

[diamags]

I've been getting them for 6 years. As some docs get crazy about this, I asked mine (who is a global well known specialist) if I shouldn't be reading off, and he said that this combo is working so well, the odds of bad side effects are quite low, so no, we should keep on. I have to say, I'm loving the results and am going with it.

[Zebra2018 in reply to diamags]

Oh, thank you so much for your input.

[Rhwright12]

I just switched from 6weeks (I get IV Herceptin/Perjeta every 3 weeks) to 12 weeks with Zometa...after 3 years. There are new studies that say 4 vs 12 week shots/infusions are equal in efficacy. Included in that is Zoladex which I also get at 12 weeks. It took some convincing and God knows they wouldn’t offer. But if they know u do your homework and advocate for yourself they eventually give in...And I hate to bring it up but the problem for them is also the shots cost the same for 3 months and 1 month...$5600 for XGeva if u get it 1 or 3 month shot. And my Zoladex is around $2500 even for a 3 month dosage...Same as 1 month price...

But I always tell them I work full time and don’t have time for 27 appointments a month...😂🤣😂

[Hidden in reply to Rhwright12]

Hi Heather,

I am curious about your zoladex injections. My GP mentioned the possibility of having it done once every three months so I wouldn't have to keep going back to the doctor's surgery every 28 days. I ran it by my oncologist to get her thoughts and she immediately vetoed the idea. She mentioned a patient who switched from monthly to three monthly zoladex injections and she said that her periods returned during that time. I wouldn't want the same to happen to me, as I am only post-menopausal due to my treatment. If I stop treatment, my periods will return.

Were you menopausal when you started your treatment? If so, perhaps that's why you are able to have the injections less often. I have also been told about a new treatment which could replace zoladex injections. My GP said patients could even inject themselves. But breast cancer patients will not be the first to be offered this treatment. I think prostate cancer patients would go first. So I wonder why you have had to fight to get your zoladex injections every three months, but my GP was willing to let me have it less often? If my oncologist hadn't been against the idea I would probably have listened to my GP and accepted that option.

Sophie

[Rhwright12 in reply to Hidden]

Yes I am premenopausal. That’s what the shots are for. To put u in menopause. Anyways. Find the articles that site that 1 and 3 month shots are the same in efficacy. One thing I’ve learned in 3 1/2 years is they are not always up to date on things.

[Hidden in reply to Rhwright12]

Thanks for letting me know. Yes, I know that the injections are to help put us into menopause. I just wasn't sure if you had already gone through the menopause naturally. It's interesting how doctors have such different ideas on what to do. I will stick with having my zoladex injections every 28 days. I don't find them a burden at all, and I always get a local anaesthetic so it doesn't hurt.

Sophie

[Zebra2018 in reply to Rhwright12]

I am post menopause and the treatment is the same. I hope they know what they are doing!

[Zebra2018 in reply to Rhwright12]

Thank you for info.

[Maludagui in reply to Hidden]

Hi good morning ladies 🌺😍 one question : Who has covered all the expenses of Xgeva and Zoladex? How they did ? They are super expensive injections

[Zebra2018 in reply to Maludagui]

Medicare covers the shuts 80% and if you have supplemental insurance the 20% is covered by them.

[Maludagui in reply to Zebra2018]

I have blue cross insurance. My policy covers 60% How can I get help to cover 40%? thanks

[Rhwright12 in reply to Maludagui]

Zoladex comes with a copay card. U may have to ask. But mine covers like $1500 a year. Zometa is an infusion but it’s only like $500 vs $5600 for XGeva. I had a lot of side effects with XGeva so I switched back to Zometa...just a thought...

[Maludagui in reply to Rhwright12]

Zometa is the same Xgeva and is more cheap?

[Rhwright12 in reply to Maludagui]

Yes! XGEVA is just newer...

[Zebra2018 in reply to Rhwright12]

What kind of problem you had with xgiva?

[Rhwright12 in reply to Zebra2018]

I had headaches, light headed ness and bone pain which I never had with Zometa.... 😁

[Zebra2018 in reply to Rhwright12]

Thank you 🙏

[Hidden in reply to Maludagui]

Hi,

I don't have xgeva injections. This probably isn't relevant, as I'm in the UK. But all of my treatment is covered for free on the NHS. I see a private integrative doctor too, that I pay to see.

Sophie

[Zebra2018 in reply to Rhwright12]

Thank you for the info.

[michelangelina]

I have been getting xgeva every month for about a year and a half. I asked my oncologist about switching to every 3 months, and he said we would talk about it after I had been on it for two years. Not sure why!

[Zebra2018 in reply to michelangelina]

That is exactly what my onc told me!

Thanks for your input

[michelangelina in reply to Zebra2018]

Where are you located? I am in California, and getting my treatment at Stanford.

[Zebra2018 in reply to michelangelina]

I am in northern Virginia. He treated me when I diagnosed with bc on 2011. His office located near my house and he has a good reputation here.

Sima

[Rhwright12 in reply to michelangelina]

Yes...I think I had to wait too...I’m at 3 1/2 years now 😀

[hdhonda]

I wasn't laughing at anyone but the typo's were so funny. I make them all the time but mine are just stupid and not funny. You and Barb brightened everyone's day. Blessings, Hannah

[Duranteg]

Yes, I had them once a month for two years.

[Zebra2018]

Thank you for your input

[NPmary]

No studies done on taking the drug after a year. Standard of care is once a month for a year than every 3 months. Your doc probably feels he has anecdotal evidence in his practice which leads him to believe there is benefit in continuing once a month. You have a right to know what his reason is and the right to decline his suggestion if you want to.

Good luck. Advocate for yourself based on your own values given the most accurate information you can get.

[Jerseygirl45]

Yes I have been getting it for 3years as it is to make my bones strong.

[Duffles in reply to Jerseygirl45]

Hi I just had my first one last week...and have so much more pain in leg and back...even arms! I have lots of bone mets. Did you ever have pain...that hopefully gets better?

[Zebra2018]

Are you receiving the shuts every month?

[Gwennie123]

26 months