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Bone Mets Thread

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Comments

  • Myra1211
    Myra1211 Member Posts: 532
    edited May 2015

    I am so sorry Deanna, yes you did write. I am hoping that if we can get women from around the world to join together thru a concerted effort, maybe we can get something done. The frustration level I have now is so many young women, with babies and young children are facing this awful Stage IV disease and the decisions they are forced to make at such a young age breaks my heart. We must think of a way to get to the world, with so many smart, caring, knowledgeable women at work here in these forums, we must be able to think of something. Myra

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2015

    I know, Myra! That's what tugs the most at my heartstrings, too. I keep picturing some sort of march(s) or demonstration(s), devoid of pink, but somehow illustrating the magnitude of mbc in terms of young women and their children. The demonstration with women lying in a hallway during a recent mbc conference (representing over 100+ deaths per day from mbc, I believe) was great, but one image isn't sufficient to create a lasting impact. Research shows that people need to see a message 8 times before it truly registers. So not sure if the aim should be to change public awareness, or just to put pressure on those who have funds -- like StandUp2Cancer -- to allocate more to mbc, or something else???

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited May 2015

    Hi Myra. I just haven't been feeling too well. Hopefully that will change during this next week while I'm away for vacation. I had to get my hair cut today.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,353
    edited May 2015

    dune,

    Probably not what you wanted, but I think it looks kind of cute!

    Justjean,

    Details, photos, please! I am almost jumping up and down with excitement as I leave on June 13th.

    I hope everyone has a good long weekend and do at least one thing you enjoy.

    Caryn

  • HLB
    HLB Member Posts: 740
    edited May 2015

    iI like the haircut too Dune. its very similar to how my hair looked when it was starting to grow back after chemo. got so many compliments from stangers everywhere I went. more than any hairstyle I ever had. I was told I looked like Annie lenox. put on some red lipstick and smile real big and wide and take some selfies. and post them here!

  • annieoakley
    annieoakley Member Posts: 653
    edited May 2015

    Hello to all, I feel a little lost, a few days behind in my reading. JustJean,  welcome back and glad you were able to do all you set out to do, can't wait to see pics. 

    mmccall, sorry for the news of your progression. I don't understand it either, how some areas improve and others progress. Hoping your next treatment gets everything stable for you.

    QiXian, your mom is so lucky to have your support.  Wishing her a successful treatment, please let us know how she makes out after meeting with the oncologist.

    Hydranne,  yay for the great scan results! So happy for you!

    Dune,  you look beautiful as always and enjoy your vacation, praying you'll feel better real soon!

    Terre, glad to hear you're feeling better. Definitely rest up this weekend so you don't have a setback. 

    Hello to everyone else here, Deanna,  Myra, cjanet,  Caryn, HLB, Patty, Ronnie, Linda and all you beautiful ladies. 

    Hugs, Annie

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2015

    I think your hair is cute, Dune! Big change, but I do like it. :)

    Hyrdanne - congrats on the great results! Whoo hoo!

    Jean - welcome back. Can't wait for pictures!

    Thanks for the good wishes Annie.

    Hugs to all,

    Terre

  • cling
    cling Member Posts: 263
    edited May 2015


    I came back from Alaska cruise a week ago, absolutely beautiful scenery, clear weather, great crab feast, and salmon bake. But did not see any cancer center there, I guess I will not move to Alaska anytime soon! I enjoy seeing pictures on the thread, but do not know how to post it. Can someone teach me how

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2015

    Dune, I think your hair looks great, and your skin looks really good too! As I recall, that was one of the perks of chemo (or at least TC) -- really clear skin.

    Hydranne, great news on your scans & TMs.

    mm, I'm so sorry about your scan results. Even though you'd said you were anticipating possible progression, I'm sure you feel kicked in the gut. This disease is just so unpredictable and frustrating. Thank goodness your bone mets are stable! Hopefully Ilbrance (if that's the drug your onc is suggesting) will do a number on those 4 spots!

    Welcome back Jean & Cling! As far as how to post photos... click on the little picture icon (5th from right) above. When it opens, you can search for images you've uploaded into "Photos" on your computer. Or, if they're on your desktop, you can click and drag them. Now I'm hoping to see lots of photos from you both!

    Enjoy the weekend, everyone, whatever you're doing! Deanna

  • JustJean
    JustJean Member Posts: 170
    edited May 2015

    I'm just starting to import the photos from the trip but here's one taken from the helicopter on our way to land on a glacier and drink the glacier water from the stream there (AWESOME!):


    image


    JJ

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited May 2015

    nice pic jean

  • cling
    cling Member Posts: 263
    edited May 2015




    I did not get on glacier, but this is the view from my balcony on Tracy Arm Fjord. Thanks for the tips on posting pics

    • imagei
  • JustJean
    JustJean Member Posts: 170
    edited May 2015

    Here's another one... this is in Glacier Bay just past the glacier.


    image


    And here's one I like a lot which was taken in Alaska but has nothing to do with glaciers:


    image


    JJ

  • cling
    cling Member Posts: 263
    edited May 2015
    • A little iceberg apartmentimage
  • JustJean
    JustJean Member Posts: 170
    edited May 2015
    imageimage


    I want to go back...


    JJ

  • ronniekay
    ronniekay Member Posts: 657
    edited May 2015

    Oh Jean...I'm sea sick...or whatever the opposite of that is? Scared of heights here, but truly amazing & the water must've been a bit better than the bottle type! Excited to see more from you & Cling & soon...exbrnxgrl! Cling...many Alaskans come to WA state to get treatment....I meet them at my center. The cost of travel is mind boggling, but often their tx is planned here & carried out there.

    Dune...so cute! I loved that hairstyle & also got loads of compliments so yep, run with it...or just wear lipstick :-)

    Hydranne...thank heavens for good news! I hope you find new joy & strength as you move past this tx & onto hp...and that it's successful for years & years!!!

    Kiwi...how marvelous you had kitty food donated...you're such a good foster mama! Thinking your voucher should buy ice cream :-)

    Thinking of all & hoping for a happy, safe, restful weekend...XOXO

  • JustJean
    JustJean Member Posts: 170
    edited May 2015

    Nice pics, Cling!


    Here's the glacier close up. It had just calved but I was not quick enough to catch it on "film".


    image


    One more and then I'm off to bed... my body is still on Alaska time but IN eastern time and it needs to know it's LATE here!


    image


    This was taken on the outskirts of Skagway. I got pics of eagles too but they're so small you can't tell what they are!


    JJ


  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited May 2015

    great pics jean. Thanks for sharing. So amazing

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2015

    Thanks for sharing the beautiful pictures! Just fantastic!

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited May 2015


    Dune - I will add that you've got beautiful ears!

    Hydrane - Great news!

    Cling - Oh what nice pics.

    Good week-end to all. - Linda

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2015

    Such gorgeous photos, Jean & Cling! Don't be shy if you have more to share. They're so beautiful!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,353
    edited May 2015

    Oh no, the pressure is on! I am the world's worst photographer. (Infamous in my family for horrid pics) If anyone can make Alaska look bad, it would be me. I'll have to get dd to chronicle the journey so I can have a few decent pics to post. Thanks to those who take good pics.

    Caryn

  • cling
    cling Member Posts: 263
    edited May 2015
    • Jean: here is the bold Eagle! We we we at George Inlet learning the setting and harvesting crab pot. The young tour guide girl told us she used to be on an old capitan's boat and the captain will call the Eagles. He brushed her away as too immature, since this time she is not with that capitan, she would try.. The first try, after several tries, an eagle did swoop down, without grabbing the offered fish. The second when we spot the "white golf ball " on the tree, she called out again. This time, one bold eagle came into view and grabbed the fish. Soon after it left the view, another one swooped down grabbed another fish and both went back to the same tree, a mating pair! It is a great feast of the eyes, similar to the later great feast of crabs!

    image

  • cling
    cling Member Posts: 263
    edited May 2015
    • imageI am a beginner in posting the photos, can't get two pictures in one post. The white spot in the middle of the the tree is where the bold eagles nest is.
  • cling
    cling Member Posts: 263
    edited May 2015

    Caryn: just aim and shoot with whatever camera you have, Alaska will give you back with beautiful pics. I was just using my iPhone basic photo function ( not a tech person), my son used panoramic function on his iPhone and got some beautiful mountain ranges with snow caps. I am begging for him to send some of his

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2015

    Awesome eagles! I follow the Decorah eagles every year; the babies are about to fledge, which is always bittersweet. They are such magnificent creatures.

  • dixiebell
    dixiebell Member Posts: 170
    edited May 2015


    Momonana6 ...I am so glad I am reading this. Last month at my visit I told my doctor how nauseated I was, had no appetiete, chills and diarrhea all the time and lost 12 lbs in one month. He said none of that was related to cancer and I needed to make an appointment with my Primary. I cannot believe this. I can't wait to call on Tuesday. I think this may be what is happening with me. Thanks for sharing. I have been on Xgeva several months.

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited May 2015

    hope y'all are having a great weekend

  • Momonana6
    Momonana6 Member Posts: 154
    edited May 2015

    Dixiebell, An update re the Xgeva saga......My sx continued a downhill slide..extreme fatigue.....lethargy, loss of weight.......10 lb.. Our PCP did a hospital admit and Cortisol Level was 2 so I was given Prednisone. This whole situation may reflect my situation only but it would be interesting To do lab evals on others to separate it out......much luck with your appt.. My plan now is to wean down off Prednisone slowly and do an ACTH stim test to determine status of the adrenals. The literature does mention of some idiosyncratic reactions among autoimmune drugs. Gosh. Anybody watching the store? Wish you all the best. Pegg

  • dixiebell
    dixiebell Member Posts: 170
    edited May 2015

    thanks so much ladies. I am seriously considering a new physician.

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