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Bone Mets Thread

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Comments

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

    Dee, I am so sorry that the bone scan shows progression. I agree with Kathryn. If you cannot meet with the MO until the 30th, you should try to talk by phone. Under the circumstances, the MO should realize that the news is upsetting, and she should certainly be willing to see you or talk to you sooner than your scheduled appointment. Linda and Kathryn both have good suggestions. I know you have said that it is sometimes difficult to get additional scans, but the more information you have, the better it will be for determining next steps. IS it at all possible for you to get a second opinion? I wish I could be there to give you a big hug. Here is a virtual (((hug))).

    Lynne

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

    Hi everyone,

    Thank you for all your support. I have been on the phone with the ass'ts of my MO & RO. They hadn't rec'd the report yet, so I am waiting to hear from both of them. My MO's ass't said it was great that I called them right away & she would find out if I could have an MRI or PET before my appt.

    I won't know until I talk to my MO whether Ibrance is covered by BCCA or not. It's so new that I don't know yet. All I know is that my adrenaline is high & I want something done.... now! :) I'll keep you posted. dee

  • letmywifelive
    letmywifelive Member Posts: 303
    edited May 2016

    Dee, so sorry to learn about the progression. As Linda mentioned, will it be possible for you to ask for a MRI or PET ? A CT scan is pretty definitive too. Check the whole body.

  • Wendy3
    Wendy3 Member Posts: 872
    edited May 2016

    Amy my horses are at a friends ranch in Oregon running around with fifty other horses I sold my horse trailer and bawled my head off because of that now it's the horses turn but I've been so picky with potential buyers that it's taking its time. My onc said it would be disastrous if I fell off either of them and the jarring motion isn't to conducive to bone mets either. So sad I had to find something else and why dragon boating isn't the same its at least something.

    Wendy

  • lovelife49
    lovelife49 Member Posts: 26
    edited May 2016

    Dee, I'm so sorry to read this news, and I hope it is a case of the radiologist making it sound scarier than it actually is (not that anything related to this isn't scary, of course). I hate this for you, hate that you have to wait, hate that you don't know what's next, hate that you're scared, hate all of it! Hugs and prayers.

  • Wendy3
    Wendy3 Member Posts: 872
    edited May 2016

    Dee I hate this sneaky disease..as the others have said at least there are no new lesions that's huge. I'm on the Faslodex Ibrance mix I'm sure your MO could get you on the same trial. I have my CT scan on Friday so I'm not sure if it's working for me but it may for you and the SE are minimal. I hate that they don't go through the scans with us here. Chelle tells me how her onc goes through every little thing in Colorado and I have to say I would prefer it. It would help visually to see where we are at. I don't know about you but I would want to be on some treatment before I take off on holiday so something at least is being done. Ths is the hardest part of the disease I think the ups and downs it puts our families and loved ones through. However you feel right now it will get better again. It's the dance we are all dancing until they find a cure. Big hug😊

    Wendy

  • Xavo
    Xavo Member Posts: 244
    edited May 2016

    Dee, hold on. Bone scan is not very good for differentiating the causes of brightened spots. When my second bone scan showed all the mets becoming brighter, meanwhile my TM was dropping steadily and consistently, my onc. simply commented that bone scan can't tell you if the up taking is actually healing. LindaLou is absolutely right. You need more tests to figure out what's going on. Do you know if the bone scan reader is always the same person? In bigger hospitals usually not. If not the same person, their opinions and languages could cause confusion. Another important factor, if no new foci, "progression", if indeed, should be quite much qualified. Namely, it should not be very significant. Calm down. My gut says you might well be just alright. Big hugs...

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

    Dee,

    Sorry to hear about the progression. As we always say, once the new tx plan is in place, it will get easier.

    Purple Minion,

    I had rads x15, Mon-Fri, for three weeks. Quick, easy and no pain. The mapping took far longer than any of the treatments. I was scrupulous about skin care and had no problems. I did have loose stools at one point, but not more frequent, nor was I tired. I drove myself there and carried on my normal activities, though I was still on medical leave from work. My bone met is now, and has been, necrotic (dead!) for almost 5 years. Initially, I had PET scans every three months but for the past two years, I have them every six months. My mo does not use tumor markers. Don't hesitate to ask me anything

  • annieoakley
    annieoakley Member Posts: 653
    edited May 2016

    Dee, sorry you've been upset by your scan results but don't think the worst yet. As others have pointed out the big positive here is no new foci. Also my last bone scan showed increased uptake in my L5 area and when my rad onc compared it to the CT scan they realized it was actually healed very well. My oncologist said sometimes when the bone heals it looks bigger on the bone scan. They said that increased uptake means activity and healing is part of that, not always progression. Lindalou and Xavo bring up some very good points, I truly feel everything is going to be alright. In the meantime I'm sending you extra big healing hugs!

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

    Hi all!

    DH took me out for dinner tonight, he felt like we needed to get out of the house for a bit. I talked to Cancer Agency today & the RO has ordered an MRI & the MO has my report on her desk. I made it clear that I was very willing to travel to Vancouver (6 hours each way) to have a PET scan if they could order that.

    We talked about the fact that like most of you have pointed out, there are no new mets & hopefully it is just healing. The only thing that still scares me a bit is the increased pain in my back & hips. But others have pointed out that healing bone can be painful bone.

    Unfortunately it's the first big long weekend of the summer here, so not a lot will happen before Tuesday but I've had several calls from the cancer clinic, so the wheels are moving. Thank you for keeping me in your thoughts. hugs to all of you, cheers, dee

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

    Dee, It sounds like you are taking the appropriate steps to get things clarified as soon as possible. I know it will be hard, but try to enjoy the long weekend. As you know, worrying doesn't change anything. We are all pulling for you and hoping for healing, not progression. In the meantime, have some fun. Pull some weeds. Getting things done in the garden always helps clear my mind.

    Lynne

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

    Dee, I'm sorry to read your post. However, the good thing is that there is no new lesions/progression. Have you had CT scans of all those areas before? I definitely think that the bone scan should be correlated to previous different imaging. Good thing they ordered an MRI, can they compare to a previous MRI? It would be great, if necessary, to have Fas + Ibrance but not sure that BC has approved it yet. Wendy's trial seems very interesting as well if you need to change tx. Take a deep breath, you got all the wheels rolling, further testing is a must before a decision can be made. Big hugs your way!

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

    LindaE, good luck today on your allergy testing. Hope they figure it out for you. hugs, dee


  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    I am so sorry about the progression GG27. I just stumbled on a clinical trial that I want to try and wanted to share with everyone that looks very very promising. The trial number is NCT01441947 that researchers were stunned how Cabozantinib and Flaslodex combined for her2 negative breast cancer completely eliminated bone lesions. This medicine is normally for thyroid cancer but they did a Phase1 trial that included all different types of cancer and was shocked how well it responded to breast cancer bone mets. There are three different hospitals in Mass. that are excepting patients. Please look at the one scan that showed an Xray where the person had alot of lesions and then right next to it they were totally gone. This looks so promising. I just wanted to share. Hope this helps. hugs to all.

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

    Robbin, thanks for sharing that information! Do you possibly have a link to the images you referenced? I just did a quick Google search and found didn't immediately see any results information. I'm seeing my UCLA onc on Monday and want to ask her what she knows about Cabozantinib for mbc. Deanna

  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    Here is the link of what I was talking about. http://www.onclive.com/conference-coverage/asco-2011/Cabozantinib-XL184-Demonstrates-Antitumor-Activity-and-Reduces-or-Eliminates-Bone-Metastases-in-Multiple-Cancers

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

    thanks for the link Robbin-M, I'll make your link hot.

    cabozantinib

  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    Hers is another link for susan kometh...http://ww5.komen.org/Breast-Cancer-News/Cabozantinib-Shows-Promise-against-Bone-Metastases.html

  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    Thats great GG27. I was hoping to get this out there asap. We have to stick together with anything and everything we can. Love to all.

  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    Wanted to share one more link with everyone. This drug has already been approved so why should we have to go through a clinical trial to use with Flasodex. http://news.cancerconnect.com/cabozantinib-shows-promise-against-bone-metastases/


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

    While we're talking positive research news, here's something I just came across for ribociclib, which I believe is the Novartis version of palbo: http://www.managedcaremag.com/news/positive-effica...


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

    Just got called for my brain MRI, 5:45 Saturday night.... you'll never guess when my DH's surprise birthday dinner was planned for.... timing sucks.

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

    SURPRISE! He won't be there!

    Good heavens, Dee, you just can't catch a break. So sorry. Is there any way to have the party later or earlier in the evening/ day?

    Lynne

  • PurpleMinion
    PurpleMinion Member Posts: 110
    edited May 2016

    Robbin, that is interesting about the study - the study number you gave links to a HER2 positive study though :(

  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    I thought hormone receptor positive means ER+. Sorry, let me check this all out. Thanks

  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    The clinical trial says hormone receptor positive but research shows just breast cancer in general.

  • letmywifelive
    letmywifelive Member Posts: 303
    edited May 2016

    Looks like this was published in 2011 after a Phase 2 trail. If not many heard of it after that, do we know if it has progressed any further ?

  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    This is why i said her2-. Look at http://www.dana-farber.org/Research/Clinical-Trials/Clinical-Trial.aspx?tid=2465bottom of page at Criteria.


  • PurpleMinion
    PurpleMinion Member Posts: 110
    edited May 2016

    Robbin, yep, you are correct, I was reading "HER2 negative" and seeing "hormone receptor positive" and merging the two in my chemo addled brain! Looks like it is for ER+ PR+ HER2-

  • Robbin-M
    Robbin-M Member Posts: 17
    edited May 2016

    Phttp://www.onclive.com/onclive-tv/Dr-Tolaney-on-Trials-Investigating-Cabozantinib-in-Breast-Cancer

    Purple minion, just found the answer. Watch this video

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