Forum Discussion

Cate64's avatar
Cate64
Member
9 years ago

WHAT THE??

So, front up for my monthly Xgeva injection this morning, nothing out of the ordinary, like the girls in Day Onc, we always have a little chat.

First, they need to take blood because on my blood test last week where they were supposedly checking my calcium levels to enable this injection... THEY DIDNT!!!

Second, she then hands me a slip to give to the Receptionist, nothing out of the ordinary there, always does so I can make my next months appointments ONLY this one says "end of treatment"..

What the hell is with that?? I am so stressed out, I was under the impression from discussions with the Oncologist (& so was my husband) that this monthly Xgeva injection is for life now. Does this mean after my last lot of scans & tests they cant do anything else & are stopping treatment??? I dont get it!!

Now, waiting till Friday when I see my Oncologist. FRIDAY - which means the feeling of dread, nausea & no sleep will last until then..

GGGRRRRRR

10 Replies

  • angg66's avatar
    angg66
    Member
    9 years ago
    Hi Cate,
    I have Xgeva injections every few months. I used to get them at day oncology at first, but now my GP gives it to me. I will need to have these for life. So I can only guess that maybe they think you have finished with having the injections at day onc & instead get them from your local GP. If this is the case your oncologist should have communicated this to you. It's not right you have to wait until Friday. Call or email your oncologist & demand an explanation..

    Ange
  • socoda's avatar
    socoda
    Member
    9 years ago
    Hey Cate, when was the last time you had a referral to your oncologist??? Could be that the referral has run out and you need to get a new one from your GP - pretty crappy way for them to tell you that but it's a possibility. I would be ringing your oncologist, leaving messages with their secretary, registrar, anyone that could get a message to the oncologist so that the information can be checked and clarified. If necessary bombard them as it is too long until friday to endure this kind of mental torture!!! Xx
  • Scooper's avatar
    Scooper
    Member
    9 years ago
    Cate,
    I have my injection at my local G.P.  Not a problem at all.  I see my G.P. after the nurses give me my needle and my G.P. and oncologist communicate via email.  I have xvega every six weeks and blood tests every three months.   There will be a logical explanation for the end of treatment.  It is probably an administrative error.  Yes it is my understanding that I have this injection for life. With my very best wishes to you
    Sandra xxx
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Cate are you able to contact your Oncologist, as in call?? rather than wait til friday? or speak to is head of the Oncology Unit who would know whats going on? 
  • Zoffiel's avatar
    Zoffiel
    Member
    9 years ago
    I'm not driving my third oncologist because I was thrilled with the way the first ones treated me, Cate. They can be absolute mercinary shits. Hopefully this sorts itself out, and if it does turn out they have been blisteringly casual with you, sack them.
  • Cate64's avatar
    Cate64
    Member
    9 years ago
    Its a disgrace girls dont you think??? That we can be treated like that??? No explanation, nothing just days & days for worry & anxiety.

    Do these people have no concept of what we go thru or have they become so hardened they dont care what they put us thru???


  • Michelle_R's avatar
    Michelle_R
    Member
    9 years ago
    I am also on Xgeva (Prolia) and agree with waiting to hear what your MO has to say.  Maybe something adverse showed up on your blood tests, or maybe you just need a new referral from the MO. Let us know how you go on Friday, and try to keep busy so you don't stress too much xx Michelle
  • Zoffiel's avatar
    Zoffiel
    Member
    9 years ago
    Breath. Ring them. Keep breathing. This probably signals the transition from being an acute patient to someone with a chronic condition who is going to get long term care rather than short term treatment. Small oversights and miscommunications can really rattle my cage and my advice isget the info you need now if you are really stressing. Friday is only three sleeps if you have to hang on until then.
  • Deanne's avatar
    Deanne
    Member
    9 years ago
    @Cate64,
    It might just be that your onc only prescribed a certain number of injections at a time, like with other medications. I am not sure how these things work but I would be thinking that was a possibility. That might have been the last one under that prescription. When you see your onc this Friday he/she will review your situation and if things are going well (which you have every reason to think they are from how you are feeling) then you will probably just continue with your current treatment. 

    Keep busy and let us know how you go on Friday. I will have my fingers crossed that it will be all good and no changes for you. You are doing so well with all your running! Try not to stress (I know, easier said than done!) Sending hugs and keeping my fingers crossed for you. Deanne xxx
  • RNSW's avatar
    RNSW
    Member
    9 years ago
    Cate64,
    I am so sorry you have to wait till Friday to find out whats happening. I cannot offer any advise here hopefully someone else can. Just wanted to send you hugs. 
    Rita xo