Fill Out Your Profile to share more about you. Learn more...

Recently diagnosed with metastatic recurrence seeking insight

Sparks
Sparks Member Posts: 2

Well, after ten years, I was diagnosed with bone mets in March. I had unbelievable pain in my hip and was incorrectly diagnosed with bursitis. Fast forward six months and with some persistence in requesting scans, they discovered that my femur was fractured and I had been walking on it for at least six months then they discovered the mets. I had a rod placed and am 98% recovered from surgery, they radiated the bone and I have been on Letrozole for 2 weeks. I will receive Ibrance tomorrow and waiting for the go-ahead from my oncologist to start taking it. I have unwaivering faith and a tremendous circle of support. But no one quite understand what we go through. So I am hoping to find a friend or two, as I did 10 years ago. Be blessed, always!

Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Hello! Welcome to the worst club in the world! :)

  • Sparks
    Sparks Member Posts: 2

    I agree. It certainly is. thank you for the honest welcome :)

  • wren44
    wren44 Member Posts: 7,847

    Just got pathology report this morning. BC mets. Much better than the lung ca I was worried about. I'll be taking letrozole and Ibrance too.

  • ninetwelve
    ninetwelve Member Posts: 328

    Hello, and welcome to the Hotel MBC. Sounds like you have a good plan. There are many long term survivors here and this is a good group. I'm sorry about your metastasis, and I hope it goes quiet and never returns.

  • sunshine99
    sunshine99 Member Posts: 2,480

    Wow, Sparks, I'm so sorry! I never thought I'd be on the Stage IV forums, but I am. Come on over to the Stage IV discussions and you'll continue to find lots of support.

    Carol

  • elderberry
    elderberry Member Posts: 1,037

    Sparks: waving hello and welcome. I cannot imagine walking for six months on broken bones. You are one tough lady. We will all be here to support you.

  • anx789
    anx789 Member Posts: 226

    Hello there, I’m not yet confirmed of bone met but MRI seems to point to that direction, “ aggressive marrow infiltration process noted involving 20 cm of the fibulae diaphysis…suspicious of metastatic disease…” I’ll see my Onco this Friday to discuss, what should I expect when I see him?

    I’m not in pain right now, the pain comes and go, it usually comes after a long walk and it takes 5-7 days to go away. Any input will be appreciated

  • parakeetsrule
    parakeetsrule Member Posts: 605
    I didn't see this earlier, but how did your visit go?
  • UpstateNYer
    UpstateNYer Member Posts: 331

    Hello everyone,

    I had IDC 3 years ago. Told my tumor was aggressive. Been on anastrozole for 3 years. Anyway, just had routine blood work and my liver enzymes were very high. Platelets were high as well. I go for a ultrasound next week. Also getting a consult from gastroenterologist. I am so afraid that it is liver mets. I was also told I am anemic and had a positive cologuard test, so go for a colonoscopy in Oct. To top things off, been struggling with sciatica over the past week. Everything seems to be hitting me at once. I wonder if the anastrozole could be causing the elevated enzymes as well. I need some reassurance, as this is driving me crazy.


  • parakeetsrule
    parakeetsrule Member Posts: 605
    That's a lot to deal with! I hope you can get some answers soon. Waiting is the worst!
  • margarita12
    margarita12 Member Posts: 12
    ninetwelve,

    you have had a very good answer to treatments. Have you been treated only with hormonal and targeted therapy or did you also have chemotherapy?
  • shinakuma
    shinakuma Member Posts: 1

    Hi had a similar experience in my rib, fractured it twice before they would listen and I very unlike myself, demanded a CT scan. Six months after the first fracture they very awkwardly told me I had bone mets. Like I didn't know or at least strongly suspect that! Anyway I hope that you are on the improve now. Big virtual hugs!

  • moderators
    moderators Posts: 7,689

    Hello, @shinakuma! Welcome to the BCO community, and thanks for sharing your experience with us. Whether you want to share more or just chat with others who've been through similar stuff, you're in the right place.

    We are really sorry to hear about the tough journey you've been on. We wanted to let you know that we have a Bone Mets discussion with lots of great information, and you can connect with a lot of women in similar situations. Please feel free to get in touch there too, you will be warmly welcomed.

    Sending virtual hugs right back to you! 🤗

    Again, welcome aboard, and looking forward to seeing you around!

    The Mods

  • metastaticmom
    metastaticmom Member Posts: 2

    Hello All, I am new to the forum, Sparks I can't believe what you had to go through, I'm so sorry. I also had back pain for a while until they finally agreed to scan me and they found bone mets. I finished treatment for stage 3 in 2017!

    this is all new, three weeks ago and my Onco wants me to start verzenio and fulvestrant, anyone on this? I have heard it can be rough. I can't even look at my girls (8 and 14) I know I have to have hope but the fear of not being for them is too much and that when I am here ill be sick all the time … does anyone have any advice? thank you

  • moderators
    moderators Posts: 7,689

    Welcome, @metastaticmom! We're so sorry you find yourself here, we know this is a difficult diagnosis to come to terms with. You are definitely not alone, and you'll find so much support and guidance here among this community.

    We have a few threads about Verzenio that you might find helpful, THIS one in particular is a good place to start.

    THIS thread in our Bone Mets thread has several posts from other members who are on/have been on both Verzenio and/or Fulvestrant - it's a long thread, but there's so much info there. As with any treatments, you'll find experiences that range from the positive to the not so positive, but hopefully reading how others have fared can be so, so helpful.

    The Mods