XGEVA

Cate64

Afternoon Girls,

Anyone on Xgeva?? can you tell me if you are having injections monthly or otherwise???

I was having them every 4 weeks since April 2016 now out of the blue they have changed it to 6 weekly. Another 'thing' making me nervous along with the tm's.

angg66

Hi Cate

I am on Xgeva injections and have been on them for a few years. I used to have them once every 6 weeks, and then the oncologist changed them to once every 3 months. Once I was diagnosed with bone mets last year, it is back to once every 6 weeks. My understanding is that the Xgeva injection helps with bone health. If you are concerned talk to your oncologist. 

Ang xxx

Cate64

thanks @angg66 . I have bone mets & started on Xgeva in April last year & last Onc visit she said now every 6 weeks but didnt explain why & became somewhat, shall we say "agitated" when I kept asking questions & got me out of the consult room as quickly as she could - or thats how it felt anyway...

angg66

Then I think you need to find another oncologist if she will not answer your questions and listen to your concerns. 

When I was first put on Xgeva, one of the oncology nurses gave me some information on Xgeva. I can scan this information for you and send it to you. If you would like to private message me with your e-mail address, I can send it to you. It states " Xgeva..contains the active substance, denosumab, a protein that attaches.. to another unique protein in the body to slow down bone destruction caused by bone metastases or bone lesions..."

Ang

Cate64

@angg66 thank you that would be good.... I dont get whats going on...............

I want to change teams but I dont know how to or how to initiate it...........

angg66

My understanding is that it is not that hard to change teams. Go to your GP and ask for a referral to another oncologist and then once you visit the new oncologist, they will request your files from the old one. I recently got a second opinion and this is exactly what I did. I'll scan the papers soon and send them to you.

Ang

Scooper

Hi Cate, I am on the injections every six weeks also.  It was explained to me that they do it every six weeks so if you happen to have chemotherapy it works in with that. So far I have not had to have chemo.  Good luck and best wishes Sandra x

Anniepan55

I was on Xgeva for spinal mets for around six months after they were discovered. Initially it was monthly then as I suffered every side effect going my oncologist put me on every 6 weeks but with no relief from the side effects I went off it completely. My oncologist said that for the good that the injections were possibly doing for my bones, the suffering wasn't worth it. My blood results have been pretty stable for the past 5 months. Touch wood

Vix

Hi @Cate64, I have been on X-Geva monthly injections since original bone mets diagnosis Feb 2013. Thankfully no side effects. If you don't feel comfortable with your medical oncologist then for sure have a chat to your GP. We all need an oncologist we feel very comfortable with and trust and one who listens to what we have to say. This is your journey and you have to do what's right for you. Biggest hugs to you xx

Cate64

MOrning Girls, I am in a better head space at the moment yay!!

@Vix half the issue is that I am be cared for by The Northern Hospital & being a public hospital you never know who you are going to get.... For the most part I saw the same Oncologist until my "upgrade" now it seems I get pushed around from pillar to post getting anybody & everybody & 1/2 the time I have never seen them before in clinic & likely are fill ins... Its partly for this reason I am wanting to find another Team to care for me elsewhere

Scooper

Hi Cate.  So glad that you are feeling better today.  I get my needle at my G.P.  Much easier than going to the hospital.  do you have a breast care nurse at the Northern.  I am being treated at the R.M.H.  They are great there although they are not too fussed on over screening.  The breast care nurses are just truly sensational.

Lisa1407

Hi Cate
I have bone mets and have been having X-Geva injections monthly since January last year when I was diagnosed. I think they move to 6 weekly or even 3 monthly after a certain period of time, because the results are just as good as giving the injections monthly (but treatment less often is cheaper and lessens side effects). If you are looking for a new oncologist in the public system, I can thoroughly recommend Peter Mac although I presume it is further for you to travel. I am a private patient in the public system (Peter Mac) and as such was able to choose my oncologist and breast surgeon. Don't know if you can do that if your are public patient. The Peter Mac home nurses give me my X-Geva injections at home - they even come on a Saturday if you work. I am so impressed with the service at Peter Mac. You also get access to clinical trials if you are eligible - they are involved in so many that they are likely to be able to fit you into one. I was on Fulvestrant monthly injection which worked for 12 months, but bone lessions are now slightly active again. So have switched to Letrozole. Hoping to add in Ribociclib when it becomes available through compassionate access (another advantage of being at Peter Mac) in April.
Cheers Lisa

Cate64

@Lisa1407 thank you, thank you.
I have made contact with a Peter Mac BC Nurse via email, she seems lovely but I am yet to actually speak with her as I find I get rather emotional when ta;lking to people about it.

I dont care how far I have to travel I just want to be out of TNH & away from their care team.

Cate