This is a nightmare I cannot wake up from

Sam09Sam09 Member Posts: 132
this morning at my oncologist appointment before my treatment I happily lisined as she read out my wonderful mri results. All my 12 large liver tumours shrunk to scar tissue hooray. Suddenly I saw her face drop as she read on turning to me explaining I had multiple metastasis along my thoracolumbar spine T11 L1 L2 L3  I thought perhaps the floor may open and swallow me as being right there I thought was the last place on earth I wanted to be. Last night I had woken up and I knew deep down somehow news of this sort may happen today and I was right. So ladies please help. I have good news regarding my mets to my liver. But am I doomed now with bone mets. Right now I'm forgetting to breath. I want to grow old forget the wrinkles I never wanted or the grey hair I now want so much I just want to live a long life. Am I dreaming chasing gold that can never be. I do no longer think I can ride this roller coaster it is causing me great grief pain I find that never goes away I'm never going to be happy again I'm sure. I desperately need to live my beautiful 2 year old French mastiffs life out because no one would care and love him like me 
I apologise I'm wallowing in self pity I know I am and I can't find any peace I'm so very frightened and ashamed 



  • brightspacebrightspace Member Posts: 246
    Hi ya sam ..big huggs dear....what a bummer not a good day...many gals with same progression who have had next therapy and have improved..i regularly read posts on where mbc people have more info on their types of mets and therapies they have ..they provide great info and very uplifting posts 
    ..did a partial hike uup mt warning this morning to see how fit i am .....other than ankles play up as on leterzrole did ok
     l best bright 
  • brightspacebrightspace Member Posts: 246
    Hi again 
    What treatment was proposed by your onc?
  • Sam09Sam09 Member Posts: 132
    She has suggested radium
    denosumab and letrozole has anyone done these. If I have radium how would it affect me side effects wise and the others. 
  • brightspacebrightspace Member Posts: 246
    I beleve radium used to shrink tumors and other used to control progression . Looks like you have hormone pos mbc..Have you gone to ...breast
    I recommend cup of tea a dog on leash go girl..
  • ZoffielZoffiel Regional VictoriaMember Posts: 1,642

    Hey Sam. That's not good news. No wonder you feel awful; anyone with any sense would be terrified--it is a nightmare. Thing is, none of this is your fault. I don't know what you mean about feeling ashamed, but I hope it isn't connected to any idea that you could have avoided being in the situation you are in. Cancer is cruel and sneaky and doesn't discriminate--nothing can keep anybody safe. Yes, we can take advice about looking after ourselves, but the shitty thing is that luck plays as much a part as anything else.

    Don't give up, Sam. There are ladies here who have been living with metastatic disease for a long, long time. Sure, it's not what you want to have happen, but it doesn't mean that you won't ever be happy again. I bloody hate rollercoasters and wouldn't want to be on the one you are riding at the moment but, realistically, any of us could already have bought a ticket without even knowing it. This really is a shit of a disease. Marg XXX

  • iserbrowniserbrown Regional VictoriaMember Posts: 2,284

    What a bummer!  Liver is good, that is fantastic and then a but...........there are others on here that are in your predicament.  I can only offer words of support along with a few swear words, but I think you've probably got the swearing part covered.  Take a deep breath or two and try and get your rhythm back with breathing, it all helps, don't fancy the alternative!  

    If they can shrink the liver tumours then I reckon they'll have a damned good go at shrinking this new lot!

    Marg is right, that lucks plays as much a part as anything else, can't seem to put luck into good things but hey we're all in the lucky camp at present, feeling crappy, et cetera

    Take care and sending you a virtual hug x

  • RomlaRomla AdelaideMember Posts: 1,136
    Hi @ Sam08 Can't help with radium but am on Letrozole and Denusomab - trade names Femara and Prolia. Whilst only been on them 3 weeks can share this my gp has said has several patients on Prolia - injection 6 monthly to build bone - and very rarely any side effects. There are side effects with Femara including bone thinning which is why you have probably been recommended Prolia.Femara is an aromatase inhibitor for post menopausal women to prevent recurrence .Apparently the two drugs work well together and my oncologist said  Prolia has the additional benefit it further reduces chance of recurrence.Prolia is expensive $275 ? unless on PBS where it is $38 every 6 months.Prolia is on PBS if over 70 or had a fracture due to osteoporosis Hope this helps a bit and sending you hugs. X PS There is a search bar of the home page which will enable you to look at past posts which might help further whilst you are waiting for responses
  • wendy_h67wendy_h67 Member Posts: 409
    Hi Sam ,I have numerous bone mets from my skull bones to my pelvis including my vertebra in my spine and ribs. I was diagnosed over 5yrs latest ones are in my shoulder blade and upper femur area. I had radiation treatment first to shrink them in my spine as they were pressing on my spinal cord. I have been on different treatments and have managed to keep the areas stable. I still manage to get out and enjoy life. It is great news that your liver tumours have shrunk so stay positive and enjoy life. Do the things that make you happy. Wishing you all the best. 
  • lesleyblesleyb Member Posts: 40
    Hi Sam, try not to be too focussed onthe bone mets.  I have had bone mets for 3 years now.  i have only ever been on Xgeva bi monthly and aromatose inhibitors.  There has been a gradual progression lately so soon I will be starting one of the chemo tabs (can't remember the name of it).  Hopefully you get 3 years and more from your bone progression.  Radiation is very helpful in knocking some of the cancer around.  No side effects for me apart from a little pain in the first couple of weeks.  This was easily managed with pain killers.
  • Sam09Sam09 Member Posts: 132
    Thank you everyone for your posts 
    is there anyone out there with my diagnosis that can offer advice. Last night I couldn't sleep at all after waking up after 2 hours. Today I feel so dizzy and strange. I feel totally different than before. I'm estatic my liver tumors have shrunk away. Somehow I in myself believed I was lucky it was in my liver as it is an organ that can regenerate its self however having it in my spine is scary stuff and I can't get my head around this diagnosis. Seriously it appears twice now I have only found it had progressed through my insistence of a ct scan and then the MRI I just had. I fear it's elsewhere  else and it's doing me in big time. Life's over as I knew it let's face it. Cancer eats away at us like a black demon and not only our body's it's now onto destroying my soul too 
  • iserbrowniserbrown Regional VictoriaMember Posts: 2,284
    @Tracey_B ;  hopefully may be able to help you - Tracey has boney mets 
  • ShorelleShorelle Member Posts: 80
    Omg Sam, I cant offer anything as my bc has gone for now but I hear you. I hear your fear. I hear your cry and I hear you when you say it takes your soul. It certainly does. So many people hear are still so positive, I can't work out how. Dont give up. Xxx
  • brightspacebrightspace Member Posts: 246
    Hi Sam yes this diagnosis of mbc is f#**# scary ..but do not let it control you ..we have been told it is not curable
    Yes for a lot of us it will hopefully remain  treatable ..for many years
    as you are in a dark place ...please contact the bcna counsellor for support at this time 
    Regards bright

  • Sam09Sam09 Member Posts: 132
    Thank you brightspace for your post. Though I won't contact a bcna  counsellor as I Firmly believe from a previous experience
    unless one has walked in the same shoes as the one they are councelling it is useless.  I do not believe a book can teach you how we feel. And I hate being patronised. I prefer talking to you ladies whom are walking in my shoes. But thank you very much for the thought
  • TennilleTennille Member Posts: 152
    @Sam09  I was diagnosed 4 months ago with mets to liver and innumerable mets to bone. I am more worried about liver mets because you need you liver to live. I am on Letrozole,Denosumab, Zolodex and just started on Xeloda  (chemo tab) My onc was also more concerned about liver than bone mets. Try and stay positive hun, I know its hard as I had a few flat days after finding out I had to have chemo. If you can manage your pain and keep your bones strong then it can be managed for many years.
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