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Bone Mets Thread

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Comments

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited May 2016

    Dixiebell, Congratulations for the birth of your granddaughter. May she have a life filled with happiness, love, adventure, and lots of fun. What is her name?

    Dee, I am glad the brain MRI looked good. Get through that CT scan today, take a deep breath, and enjoy your dh's birthday dinner. I am holding you in my thoughts today. Once you have the CT results and TMs, you can celebrate again, then you can continue planning your October vacation. You must be exhausted.

    Babs, I love to dance. I am a terrible dancer, but that doesn't stop me. I think if I did much of it now, I would be pretty sore, too. I am glad you had such a good time. You are right, we should find something we want to do, and just do it.

    Kathryn, Wow, you are jumping Into vegetable gardening with both feet. You will have to post picture of your harvest. Everything tastes better when it is fresh from your own garden.

    Patty, I hope you are okay.

    Terre, Valerie, Carol, And Bosco, we haven't heard from you lately. I hope all is well.

    Good vibes to everyone having scans or getting results. Sending hugs to everyone

    Lynne

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,340
    edited May 2016

    Dixiebell,

    Congrats on the birth of your granddaughter. A new family member is a very life affirming event

  • Kendrasue
    Kendrasue Member Posts: 107
    edited May 2016

    Good morning, dear friends! Lynne, xo, thank you for thinking of me.

    I'm self-medicating with Advil, hoping to slay the inflammation beast in the heel and tendon of my foot. Thank you, dear ones, for your encouragement to do this. Also, I hope today's dose helps the sudden pain in my hip that's a direct result (I hope) of bending the wrong way doing beloved weeding.

    My pool is officially open and ready for...knitting! I can't jump in yet, until the new heater gets set up, hopefully next week. Too bad, as it's going to be 90 degrees today.

    It's been a little difficult for me to do much reading or writing lately. I will try to catch up, and am sending all love to everyone.

    xox,

    Valerieimage

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited May 2016

    Hi Valerie, thank you for check in. I hope the pain goes away soon. In the meantime, try to stay cool in that heat that is coming. Your pool area and yard look beautiful. My pool will be opened early next week. Unfortunately, we do not have a heater. Boo! We are having several trees taken down to allow more sun into the area, but I will not be jumping into the pool any time soon. I like the color of the yarn. What are you knitting?

    Lynne

  • iwrite
    iwrite Member Posts: 746
    edited May 2016

    Amen Babs!

    Valerie - the pool looks wonderful! Enjoy and take whatever meds you need to stay flexible :)

    Dee - So happy for you that the brain scan was clear!!! I'll ask about radiation at the next appt.

    Dixiebell - congratulations on the new grandchild...I agree that pix every 3 months sounds about right!

    Lynne - hope you can get in the pool soon. A few 90 degree days should do it!

    Have a good day everyone!

  • cjanet
    cjanet Member Posts: 288
    edited May 2016

    Damn Valerie, Can I move in? That looks wonderful. Can you teach me to knit too?

    Waiting to hear back from my nurse. I am trying to get Xeloda approved to take orally. Also waiting to hear if they have biopsy results yet. My abdomen is bothering me daily, gassy, pain, cramping, on and off. It's not always bad but always reminding me I have untreated liver mets and we need to get this show on the road already.

  • AmyQ
    AmyQ Member Posts: 821
    edited May 2016

    I love swimming pools and have ALWAYS wanted one. Well, since I sold my business this year and with my husband and I both retiring soon, we are installing a small pool in our backyard! I am so very excited. With bone pain from mets and "iron bra" sensations from my BMX 3 years ago, floating in a swimming pool is therapeutic - I feel absolutely no pain while floating in a warm pool, which I would keep at about 88 degrees.

    Valerie your pool looks so cozy and intimate - that's what I'm looking for. Thanks for sharing.

    Cristina, I too hope you can get a resolution of your liver mets and the subsequent abdominal troubles - keep us posted.

    Amy


  • dixiebell
    dixiebell Member Posts: 170
    edited May 2016

    Introducing Hadley James (James as a middle name after both Grandpas)image

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2016

    What a beautiful baby, Dixiebell! Congratulations to the whole family, and especially to you on your very first grandbaby!

    I haven't been keeping up here very well lately, but I was at UCLA on Monday, and all is good. Funny that you posted a pix of your pool, Valerie (which, by the way, looks beautiful, as does the rest of your yard and surroundings) because exercise was my onc's #1 recommendation for fatigue. And when I told her that walking any significant distance made me hurt too much, she strongly recommended swimming, which I'll also start doing again as soon as our pool warms up a bit more. Or maybe I should get a lightweight wetsuit? Just thinking out loud, because I'm a wimp when it comes to cold pools.

    Cristina, how long have you been between treatments? I think I would be raising hell if I was you! Approval via your onc's office should take no more than an insistent phone call from them to your insurance company. A lengthy process is unacceptable in our situations.

    Dee, so relieved to hear the issue with your skull has been re-identified as an old injury! Hopefully, you'll continue to get good news from today's scan.

    Babs, I'm so glad you got to go to that wedding and dance the night away! I'm smiling thinking about you!

    Kathryn, your garden sounds wonderful. And yes, I think swimming may be easier on you than yoga.

    Whoever asked about Carol, she's just taking a little break from BCO. She's having scans on Friday, and I'm sure she'd appreciate all the positive vibes, thoughts, prayers and good ju-ju you can send her way.

    Lynne, I hope you've rebounded some. The losses here can be devastating, and I think it's especially difficult b'cuz I never want to confide why I'm feeling down to my family, so I try to push it out of my mind when they're around, which only adds a degree of loneliness we experience w/mbc.

    Wendy, I'm very concerned about Myra, too.

    Hugs to all from deNile land here. Deanna


  • 50sgirl
    50sgirl Member Posts: 2,071
    edited May 2016

    Dixiebell, Hadley James is beautiful. I think he has a trace of a smile on his precious face. He looks so calm and comfortable. Congratulations to all of you.

    Lynne

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited May 2016

    Deanna, Thank you for the update on Carol. I will definitely have her in my prayers and will send positivevibes for Friday's scans.

    Lynne

  • Lindalou
    Lindalou Member Posts: 598
    edited May 2016

    Deanna, not being able to get in touch with Myra has me thinking. Would you be so kind as to update the contact list and send it out again for those of us who want to be on it with current contact info? I still have not heard from her.

    Edited to add congratulations to Dixie....beautiful baby.

    Linda

  • Wendy3
    Wendy3 Member Posts: 872
    edited May 2016

    Dixie I am so envious lucky you congratulations. So lovely to see such a beautiful little guy so cute! So I don't have a pool or a yard for that matter in the city. I could try swimming in the ocean I guess I think I would want a wet suit lol.

    So for those of you who asked my sister saw her oncologist finally today . She is pre cancerous I don't know what that means. They will do a lumpectomy most likely and she will get radiation and tamoxifen. This makes me so sad. The interesting thing is her oncologist wants to see us together. He said to her that we both should be eating aspirin every day. I always figured that was for heart issues. Anyway I figure it can't hurt to see someone else as well so I will. Tomorrow can't come soon enough I want to know what the deal is with my ct scan the waiting is always hell.

    Wendy

  • babs6287
    babs6287 Member Posts: 1,619
    edited May 2016

    Dee- so happy about your brain scan results. Make sure to take DH out for a special dinner/lunch or whatever to celebrate

    Dixiebell- your granddaughter is beautiful. Enjoy your time with her-it's the best. I love being with my 2 granddaughters (5 and 3)

    Valerie-your picture makes me miss my pool! It was so relaxing to sit out there and just enjoy nature!

    Cristina- when I went off Ibrance and onto my next treatment they had me on no treatment for 3 weeks. I hope you get your biopsy results quickly so you can move forward with a treatment

    Amy so happy you're getting your dream pool-enjoy it

    Deanna-please tell Carol we're there with her-virtually holding her hand.

    Good night all

    Babs

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2016

    Linda Lou, you're right -- I really do need to update our member list, and I apologize for not having done it already. In truth, I just have not been able to look at it knowing that two dear members are no longer with us. I know it's been awhile, but every time I've thought about doing it, I haven't been able to face taking them off the list.

    So... I promise to get it done in the next few days, but I have one request. If you have an update or you want to be added -- even if you've already sent the info' to me in the past -- would you please send it to me again? I'm asking so that I don't have to go back through umpteen PMs searching for updates from a month or more ago.

    Wendy, I'm glad to hear your sister's tx plan is in place. It sounds like her dx is DCIS, which is a pre-bc. And some docs are recommending aspirin now as an anti-inflammatory because inflammation has been implicated in the disease process. In other words, it's now believed that the environment in which bc cells flourish is key to why some bc cells take hold and others are taken out by our immune systems before they ever become a problem. Did your doc(s) also discuss genetic testing with you?



  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited May 2016

    Phase III study of ribociclib (LEE011) plus fulvestrant for the treatment of postmenopausal patients with hormone receptor-positive (HR+)

    Abstract about upcoming trial posted here

    https://community.breastcancer.org/forum/8/topics/...

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited May 2016

    ASCO abstract

    A U.S. Food and Drug Administration (FDA) pooled analysis of outcomes for bone only metastatic breast cancer (MBC).

    Sub-category:
    ER+

    Category:
    Breast Cancer—HER2/ER

    Meeting:
    2016 ASCO Annual Meeting

    Abstract No:
    570

    Poster Board Number:
    Poster Session (Board #58)

    Citation:
    J Clin Oncol 34, 2016 (suppl; abstr 570)

    Author(s): Suparna B. Wedam, Julia A. Beaver, Laleh Amiri-Kordestani, Erik Bloomquist, Shenghui Tang, Rajeshwari Sridhara, Amna Ibrahim, Geoffrey Kim, Paul Gustav Kluetz, Amy E. McKee, Richard Pazdur; U.S. Food and Drug Administration, Silver Spring, MD; U.S. Food and Drug Administration, Bethesda, MD; FDA, Silver Spring, MD; Food and Drug Administration, Silver Spring, MD; U.S. Food and Drug Administration, Kensington, MD

    Abstract Disclosures

    Abstract:

    Background: Although bone involvement is common in MBC, little is known about the subset of patients with bone only (BO) disease and difficulties surround the radiographic assessment of bone metastases.

    Methods: Data was analyzed from eleven prospective studies (n = 7950) of nine experimental agents submitted for treatment of MBC in initial or supplemental New Drug or Biologics License Applications since 2005. Analyses were performed in three subsets: BO, bone with other metastases (BWO), and no bone metastases (NBO). Early discordance rate (EDR; investigator calls progression event earlier than blinded independent central review {BICR}) and late discordance rate (LDR; investigator calls progression event later than BICR) were estimated on 4012 patients subject to a BICR.

    Results: Bone metastases were identified in 35-57% of patients across studies. BO disease was present in 4-26% of patients, dependent on subtype. EDR for patients with lesions outside the bone (n = 3691) was 40%, and LDR was 45%. For the BO subset (n = 321), EDR was 65%, and LDR was 24%. Exploratory progression free survival (PFS) results are shown in the following table.

    Conclusions: This exploratory analysis suggeststhe BO subset of patients may have a distinct natural history and a differential response to Her2 targeted agents. In addition, there appears to be bias on the part of the investigator when assessing this subset of patients. Further efforts to better standardize bone radiographic evaluation for clinical trials and clinical practice is warranted.

    You need to click this link to see the table:

    http://abstracts.asco.org/176/AbstView_176_170163....


  • LindaE54
    LindaE54 Member Posts: 1,379
    edited May 2016

    Good morning all,

    Dixie - thanks for the pic. Baby and grandmother are both beautiful!

    Deanna - thanks for the update on Carol. Keeping her in my thoughts and prayers.

    I'm also concerned about Myra. I'm hoping she's just taking a break from BCO.

    My girlfriend who lives nearby has a beautiful heated pool. Joining you ladies in swimming a bit as soon as it's ready.

  • GG27
    GG27 Member Posts: 1,308
    edited May 2016

    Hi all!

    I'm afraid I haven't had time to get caught up on the thread. I'm still so exhausted, mentally & physically from the tests & all the travel, that I need a couple of quiet days, but I wanted to up date, as you have all been so kind & supportive.

    Did the CT yesterday am, within 2 hours, the RO called me. She doesn't see anything concerning, but she said that my MO may see it differently so she's leaving it to her to interpret. So I have to wait til Monday. One of my TM's came back at normal, CA 15-3 was 9, the others hadn't been done yet.

    We are being consciously optimistic, but I've been here before & been slammed when I get down to Victoria & see my MO.

    take care all & I will read & post later, cheers, dee

  • cjanet
    cjanet Member Posts: 288
    edited May 2016

    Hi ladies, I have a question. Do we know what Rachel1's real name is? Her posts mirror someone on FB of a different name and in my head I thought they were the same person, and that person passed away. Can anyone shed light on things? Am I confused? I'm not sure if I'm allowed to post the name here.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited May 2016

    Dee, I will remain optimistic for you and believe that your MO will agree that there is nothing concerning about your CT scan. It is unfortunate that you won't hear from MO until Monday. Woohoo for the TM result that you have received. Did you and DH have a nice lunch yesterday? Please try to relax and enjoy yourself thisweekend. I know that is difficult right now, but you need time to recover from all the running around and testing.

    Cristina, I don't know Rachel1's real name. I hope she isn't the person from FB although that person has been lost to this disease whether she is Rachel1 or not, so it is sad either way. I know that Rachel has been having a rough time lately, and I haven't seen any posts from her during the past week. I hope she is okay. How are you doing? Any word on when you will start treatment again?

    I met with urologist to review my urology CT scan. It was fascinating, and she took her time to explain everything about the kidney stone and other possible issue in right kidney and the mess that is where the left kidney should be. I did not feel rushed, and she answered many questions from me and my DH. I wish all doctors were more like her. Next step is to have procedure to break up kidney stone with laser and see if the other issue is a real issue. That will be done in the next couple of weeks. I have to pick a date.

    It is hot here, but not humid. A heated pool would feel really good right now.

    Lynne

  • cjanet
    cjanet Member Posts: 288
    edited May 2016

    Lynne- I'm starting Xeloda tomorrow night if it arrives in the mail tomorrow. Shocked

  • tedmom
    tedmom Member Posts: 15
    edited May 2016

    I don't post very often but I follow the boards when I can. I had yet another CT and MRI yesterday in preparation for having Cyberknife radiation done on the tumor in my spine.Hopefully I can get that accomplished next week. It so frustrating to "hurry up and wait". My MO wants me to wait to start on Xeloda until after the radiation. Not sure exactly why. I only took Ibrance/Femara for 3 months since I had more mets and only a little improvement in others. After getting all the instructions on Xeloda and its numerous side effects I'm not really looking forward to taking it. Trying to draw strength from all you wonderful women.


  • AmyQ
    AmyQ Member Posts: 821
    edited May 2016

    Cristina, perhaps you could PM Deanna - she is keeping a list of BCO members who want to register their whereabouts and hopefully be accounted for over the years. She may be able to help. Keep us posted. I hope Rachel is not the same.

    Amy

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2016

    Amy, Cristina ~ Rachel1 is not on the Bone Mets list. Cristina, do you know how to find all of her previous posts here on BCO using the search feature? Perhaps you'll find clues within her posts that will hopefully preclude her from being the person on FB. Let us know if you figure anything out or want help sleuthing. Until then I will hope and pray that our Rachel1 is okay and just taking a break.

    And glad your Xeloda is on the way, Cristina! I hope I didn't come across as too bossy earlier. I just didn't want you to slip through the cracks, especially with a long weekend coming up.

    Tedmom, I hope Xeloda is the magic ticket for both you and Cristina! It's been a wonder drug for many women. Try not to worry too much about the SEs. It's good to know about them, but it doesn't mean you'll get them.

    Thank you to those of you who have sent me additions and updates for our member list. I have just started to revise it, and I have questions about 3 people. Is anyone in touch with or does anyone have information about Sharon8 (last posted on BCO on 12/29), JustJean (last posted on 3/24), or leva (no longer comes up as a BCO member, nor could I find her on FB)? Is anyone close enough with them to reach out to them? If not, I guess I will simply leave them on the list until they post or we get an update.


  • AmyQ
    AmyQ Member Posts: 821
    edited May 2016

    Deanna, thank you for all you do to maintain our list of members. It's comforting to know you have this under control even though many parts of our lives are out-of-control thanks to cancer.

    Amy

  • Peanut0110
    Peanut0110 Member Posts: 37
    edited May 2016

    Hi Deanna how do I know if my name is on the list? I have been following posts for some time but just joined.

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2016

    Peanut, no it's not yet. The list was created in 2015 so that we would have a way to check up on active members on this thread if they suddenly become inactive or were just having a difficult time, so that we could reach out to them with a card or a txt msg. Being on it is voluntary. If you would like to be, please PM me your contact information. Happy to add you!

    P.S. Just to clarify, there's also a central address book that is also voluntary, but I'm not sure who keeps that. Anyone know??? You can probably use the search feature to find that contact if you'd like to be added there as well.

  • GG27
    GG27 Member Posts: 1,308
    edited May 2016

    Rachel isn't on the central address book either, I checked this morning...

    Deanna, all my info is still the same. thanks, dee

  • babs6287
    babs6287 Member Posts: 1,619
    edited May 2016

    Dee-that's really good news

    Ted mom & Cristina- Im hoping Xeloda works for you both! The side effects are so worth it if you get results!!!

    Babs


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