Bone Mets Thread

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited January 2019

    Spent a wonderful week in Iceland over the holidays. The raw beauty is just spectacular!

    (Hope my photo posts

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  • nonahope
    nonahope Member Posts: 695
    edited January 2019

    Welcome to the newcomers. Yes, you will get lots of support and information on the board.

    Jen...didn't see any picture. Try again. I can only imagine the beauty!

    Wishing all a good week!

    Hope

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited January 2019

    image

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited January 2019

    image

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited January 2019

    the first waterfall is called Skogafoss and the second is Gulfoss, which is located within Thingveller National Park and an important site of Viking life. And here’s one more of my son who I adore more than anything or anyone else in this world. This California boy loved the snow.

    image

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited January 2019

    image

    Downtown Reykjavík street leading to Hallgrimska church

    image

    It was so wonderful to be near water and if the fog and clouds weren’t there you’d see gorgeous snow capped mountains in the background. We went to the Grotta lighthouse at the end of the port to watch the Northern Lights (which has been a lifelong dream of mine to see!)

    imageThey take lighting pretty seriously and I love the cheer and whimsy it adds to a room. This was inside an amazing bakery above tables

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  • illimae
    illimae Member Posts: 5,710
    edited January 2019

    Great pic Jen! The northern lights are on my bucket list too. Looks like an awesome trip.

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  • BigPeaches
    BigPeaches Member Posts: 266
    edited January 2019

    Wow Jen, those pictures are amazing!! There is a show on History Channel called Vikings and I'm pretty sure that waterfall was on it not too long ago.


    I've been getting dizzy lately, out of the blue, I have a PET scan Thursday just to check up on me, doctor doesn't even know about the dizzyness yet. Could be lack of sleep, could be the Tramadol, but you know we always have to go for thinking it's the worst. *sigh*

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2019

    Jen, great pics! Iceland is on my bucket list, as well. Your son is adorable. He looks like you.

    :)

    Stefanie

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited January 2019

    Incredible pics!

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  • Cali58
    Cali58 Member Posts: 96
    edited January 2019

    Hi everyone! I am new to this forum. I was diagnosed with ER+ breast cancer in 2002. Had chemo and rads. Then again, two years ago, had ER+ breast cancer under the clavicle bone contained in a lymph node. I was treated with cytoxan and taxotere. I have been on arimidex since August 2017. I saw my MO last week. I told him I had hip bone pain and elbow pain. I am also having some sort of dermatitis on my scalp near the neck. MO referred to get a bone scan done. My appointment is on 1/28/19. He thinks I may have bone Mets. I’m so scared. Any advice and support will be greatly appreciated.

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  • LaurenH
    LaurenH Member Posts: 389
    edited January 2019

    Jen - athabks for sharing your pics from Iceland! Beautiful! Your son is super handsome!

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  • Andi67
    Andi67 Member Posts: 423
    edited January 2019

    Jen - love the pictures! Iceland is on my bucket list... I'd love to PM you to find out a little more and get your thoughts about going in the winter vs. summer, etc. So glad you got to enjoy that time with your son. He's so handsome! 

    XO

    Andi

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2019

    Hope Jen's little guy doesn't grow up to break too many hearts! Looks like that was a great trip.

    Cali58 (if that's the year you were born, it was close to the peak of the baby boom so I’m guessing you might be 60), you could also try posting in the Not Diagnosed but Worried forum. It's good your doctor is investigating but could there be some other reasons for your pain? I could not tolerate aromatase inhibition due to the achy joints.

    Bone mets are highly treatable however you may just be getting older...

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  • Cali58
    Cali58 Member Posts: 96
    edited January 2019

    vlnrph - Thank you so much for your response. I had so much anxiety that I posted here and also the Arimidex forum. I also got good responses from the Arimidex forum. Other girls say they had hip pain and joint pain due to Arimidex. Pain went away as soon as they stop taking Arimidex. My MO got me worried for no reason. You are right, I am 60. Good luck and great health for everyone on this forum

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  • Delvzy
    Delvzy Member Posts: 527
    edited January 2019

    wow love the photos Iceland looks awesome , it's so far from here I am not up to the trip but enjoyed your photos


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  • MargaritaMS
    MargaritaMS Member Posts: 199
    edited January 2019

    Jen, your photos are great. They bring back fond memories for me as I went to Iceland just about a year ago. It is a spectacular place with incredible beauty all around. I’d seriously try to relocate there but for this dang MBC! Your son is a good looking kid. So nice you had such a great time with him. The northern lights are also on my bucket list. Still. They are a bit elusive. I guess I’ll have to go back and try again! Cheers, Marg

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  • masonsmawmaw
    masonsmawmaw Member Posts: 134
    edited January 2019

    Those of you on Xgeva-whatever you do, DO NOT have any invasive dental work done while on this drug. I was on it monthly for over 3 years. There came a time when I HAD to have a tooth extracted; no way around it. All was good for about a year. Now I have ONJ and it's pretty bad. According to my oral surgeon, I have a tremendous amount of rotting bone in my jaw. He just had to surgically remove two teeth that were rotting at the roots. My sinuses also were opaque and had completely filled up with a bacterial colonization. My sinus is still open; he doesn't want to close it until the next step is completed. Meeting with another specialist this week to see if some of my teeth can be saved, or if the rotting bone is going to result in me losing them. Lots of unpleasant things ahead in terms of my mouth and jaw. Just wanted to pass this along, I know it's common knowledge but I never thought it would happen to me.

    Prayers for all...

    MM

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2019

    Maw maw, that sucks ! I'm in a fairly active Living with ONJ group on Facebook. If you PM me your name, I can send you an invite into the group...lots of commiserating there.

    Stefanie

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  • princessfluffybritches
    princessfluffybritches Member Posts: 81
    edited January 2019

    Just stopping in to say hello and I'm still lurking about and wish us all the best.

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  • snooky1954
    snooky1954 Member Posts: 883
    edited January 2019

    Hi.  Am  I correct in assuming that I wear dentures and all my natural teeth are long gone that I need not worry about ONJ?   Thank you so much

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2019

    Snooki. ONJ is jaw necrosis. Nothing to do with teeth, so yes, you could still be in danger of ONJ


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  • snooky1954
    snooky1954 Member Posts: 883
    edited January 2019

    oh  Sunset, did not know that.  Thanks for info

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  • nonahope
    nonahope Member Posts: 695
    edited January 2019

    I have had Xgeva injections every 4 weeks....for the past 10 months. My onco told me to call immediately at the first sign of jaw pain. Also, if I had to have any major dental work, they would take me off the X-Geva a month or two before and I would stay off until healed. It is worrisome.

    Hope

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2019

    Hope, it is awful, but it it is also a very rare side effect...like less than 5%. Definitely don't do any dental surgeries while on it. Otherwise, the benefits probably outweigh the risks.

    Sunset

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  • Gumdoctor
    Gumdoctor Member Posts: 675
    edited January 2019

    Hello Everyone,

    Our thread has been a little quiet lately. Just an update - I like my new MO who replaced the one who tried to strangle his wife. At my appt, she listened to me intently, told me I need to go on Zometa or Xgeva, and ordered cervical and thoracic MRIs.

    I had the MRIs last week and am patiently waiting for the results. Previous MO was not concerned at all but I have new intense (and very scary) pain in mid-back. New MO is very concerned and is willing to find out what is going on.

    I am hoping the MRIs will show something we can treat.

    Hoping to hear results starting tomorrow.

    I have to go on a 6 hour road trip by myself tomorrow and hoping my back will not get more aggravated from the drive.

    Hope all are hanging in there the best we can. And finding joy wherever we can.

    Gumdoctor

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  • Gumdoctor
    Gumdoctor Member Posts: 675
    edited January 2019

    image

    This is my new fashion accessory to address foot stress fracture. Not that it is so heavy...but lugging this thing around is pretty exhausting, especially up and down stairs and working hard to not fall on ice and snow with recent snowstorms.

    Of course studying after the fact does not help me now. But I found an article that said on average, MBC patients would average 4 SREs (skeletal related events) per year if not on bone strengtheners.

    I will not get an answer from previous MO who tried to strangle his wife on why we did not do Xgeva or Zometa for the past 13 months...new MO wants me on one of them. We will discuss at next appt and, I assume, start immediately after we talk.

    Different question though, does this foot stress fracture qualify as an official SRE?

    Any thoughts?

    Gumdoctor

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  • SusanR
    SusanR Member Posts: 598
    edited January 2019

    Hello ladies,

    Haven't been on for quite some time. I'm 10 years Stage IV with bone mets.. I've exhausted every hormonal therapy, xeloda, Ibrance, Abraxane and just recently CM5FU. I'm pretty riddled with bone Mets. Anyone have any idea what might be next?

    My recent PET Scan shows significant progression in the ribs, sternum, femurs, and spine. I was having some severe left rib pain last week and then came down with a cold yesterday. I sneezed twice and now my sternum feels like I might have broken it (is that even possible? lol). I cannot bear to sneeze or cough. I'm on 75mg Fentanyl Patch and 2mg Dilaudid as needed which doesn't do much. How do you gals feel about ice on bone pain? I'll try anything!

    I was also on Zometa for almost 7 Years before developing ONJ and am now living with some crummy dental issues and will be on antibiotics for the rest of my life.

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  • janky
    janky Member Posts: 500
    edited January 2019

    Susan - Congrats on 10 years, hopefully someone here will have an answer as to what is next...Crap on progression! I had a cracked sternum years ago (car accident, not cancer) so that may be your pain?! Sheesh I do hope and pray you find relief and quickly! Gentle hugs Janice

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited January 2019

    Gumdoctor, not to defend your previous MO but I was not on a bone strengthener for the first year after diagnosis. I think it’s a judgment call depending on how extensive the mets are and if they are lytic or sclerotic. I think my MO decided it was worth the risk of the potential side effects once I progressed and reported pain from the mets.

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