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Bone Mets Thread

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Comments

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

    No Leah, I didn't realize that! That IS funny! I'm glad I gave you a laugh.

    Happy

  • momallthetime
    momallthetime Member Posts: 1,375
    edited January 2015

    An easier year to everyone. I was out of touch, bcs i WAS DOING HOMEWORK! yep, checking and checking, spoke to many dif friend doctors to help out a little on the direction we should go. The preliminary report showed that the mets are from BC. Is it a good thing? Am not sure. So the rest of the slides went to Foundation One for mutation whatever, did you guys hear of that?? It takes about 4 more wks. Agh! Nothing is being changed till then. My daughter is on Abraxane, but i have no idea if its helpg. Also, they decided they will rad the lesion behind her eye (in the sphenoid area) and they redid a more detailed MRI and yep it has already grown from last wk, r u kidding me? Please hold that wreck! it's insane. Meanwhile i did get good docs at big hospitals interested in her case, i'm sure that her age is quite interestg for them, they were very nice and we'll be setting up appointments but only for Feb. Her onc, i must say, was very nice about it and is gonna help in a/t we need.

    Deanna, yep, for sure she is in some kind of denial, how else could you go on in this situation?? But , no she won't talk to anyone at this time, she had her anniversary a few days ago, hubby would love to take her to a show or something, but she doesn't wanna have fun, BUT i got the sibs to band together and they convinced her to go out for the bday of my other daughter! yeeh, i'll babysit, and she'll go for her sis, this weekend. So that's great. Thx for allllll your support. i called also Dana Farber, and Anderson and they will look into her stuff.

    Kiwicat- so sorry, u gotta go through this hardship with your hubby. It isn't fair. This business of the doctors delaying tests is insane. and good for you, that you went to sleep earlier, i'll be honest, i think i fell asleep about 11:45

    Dunesleeper- yep, a iittle humor its great. Really hope you could feel better soon.

    Annieoakley - hope your pain subsides with the rads. Because of what you wrote, i'll ask tom (hopefully they will be in), the rad guy, which method they will be giving rads to my daughter, forget all the bone mets, but going in the bone behind the eye, that freaks me out a bit.

    Good night.

  • MissingAlley
    MissingAlley Member Posts: 11
    edited January 2015

    Thanks Dlb823,

    I'll be follow up with my Ortho Oncology Surgeaon Shortly. My Oncologist has not been good about making that appt for me. He needs to check out my hip area. I may need surgery there. I'm glad to hear this can be removed. It's getting to the point where my legs are so heavy I can barely walk up stairs.

  • Romansma
    Romansma Member Posts: 650
    edited January 2015

    Happy New Year everyone! So much going on here on this thread I'm too ADD to keep up. I didn't feel week this past week on Xeloda. Very fatigued and nauseated. Glad it's over and I have a week off. Still in bed this morning, as usual. Really hoping to do more this next week. New pain in my right shoulder at night and morning. Will talk to Onc about it next week. I know the pain in that area can be referred pain sometimes.

  • MissingAlley
    MissingAlley Member Posts: 11
    edited January 2015

    OMG, I just called the Ortho ONC Surgeon and set up an appointment for 1/14. My ONC never follow up on anything they say they are going to do for me. I think they are just entirely too busy to give patients good service and they keep advertising for new customer when they don't make their current patients . I don't know if these are Obama cut backs or what is going on bu this is insane. If I don't do something directly myself it doesn't get done.

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

    We are going to have to be increasingly more active in our health care. Obama care won't make things better.

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

    hi ladies. Hope 2925 is being kinder to y'all. Praying for each of us

  • ReadingMama
    ReadingMama Member Posts: 338
    edited January 2015

    hi ladies, wishing everyone a happy new year!! May 2015 bring NEP for all of us.

    I haven't been on BCO since before Christmas so I've missed a lot, but thanks for the discussion of rads. It is so great to have a place to learn and share information with others.

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

    I'm all for a kinder 2015 for all of us.

  • freebird53
    freebird53 Member Posts: 141
    edited January 2015

    Well...Hello Ladies...I started my orientation/training for my PT job I am going to do for 2015...I need human contact so desperately...that my OC doc gave me permission to go back to work for no more then 20 hrs a week...So applied at a Convenient store that is newly built a chain of Maverik stores in the mid west...just checking out folks with gas and store items...thought it would help my MENTAL STATE....and he thought so too...

    I have decided not to think about this crazy disease anymore...in 2015 and the future...unless I have something come up...My b-day is Jan 12...I'll be 54 for years old...and this is not what I had planned when I turned 50 when I was first diagnosed with BC in 2010....and then cancer again in 2012 (Uterus Cancer) and now 2014 Stage IV Bone Mets...I am determined not to focus on the TM and the white counts and all the other roller coaster bullshit that goes along with this disease...I'm wasting time when I can live and be in a more positive state of mind...I say that now...but watch...I'll be on here blubbering when things are dark and scary... LOL!!!

    I have started a 3rd treatment regiment...Xeloda...didn't work...Taxol didn't work now I'm on Faslodex and a bone booster once a month...tumor markers...from April 2014 376 to 50 in October...then up to 69 in November and December 90.6...so a change had to happen...I couldn't get a high enough dose of Taxol in me...due to it lower my counts down ...so tm starting raising...

    So for now my sista's ...I say...I love you all...and I'll will be on here reading and writing...and gaining more wisdom to fight this senseless disease...God Bless!!!


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

    Good luck and all the best to you, Freebird! I think getting treatment that works and a new job is great news for you! Hoping 2015 is a kind and gentle year for all of us.

    Sending hugs,

    Terre

  • Momonana6
    Momonana6 Member Posts: 154
    edited January 2015

    Freebird, Much success with your new treatment plan. I have been on Faslodex for a year with Herceptin and Xgeva. No side effects and my TMs staying in the 50 s. Fingers crossed. I know that likely I may have the need for other with any progression but for now...I'm cruising. Enjoy being "free"! Pe

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

    Hi freebird. I hope you enjoy your new job. I agree it is important to be around other people and that it can be hard to do. I'd love it if you would pop in here and let us know about some inevitable crazy customer experiences.

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

    Congrats on the new job, Carla! I'm really proud of you! I have been having a lot of the same thoughts about the need to focus on living, not bc. What convinced me that it's important to do this as much as we possibly can was an article my son sent me last week. Obviously, we can't all move to Ikaria, but like you, Carla, I am convinced that constantly focusing on TMs, blood work and scans works against us.

    http://mobile.nytimes.com/2012/10/28/magazine/the-island-where-people-forget-to-die.html?smid=fb-share&_r=0

    And while I'm posting links, here's another story that looks inspiring, although I haven't seen the documentary itself yet, just this trailer.

    https://www.chuffed.org/project/raw-the-documentar...

    Happy New Year, everyone! Deanna



  • shutterbug73
    shutterbug73 Member Posts: 284
    edited January 2015

    Best of luck with your new job and new treatments Freebird. I too hope 2015 is good to us all. It sounds like you are off to a good start.

    I have scans on the 10th to determine if I can drop the Taxotere and go to Herceptin/Perjeta only on the 19th. I'm fully prepared to have to do another 3 rounds of Taxotere if necessary, but I would be so happy if told we could drop it. Fingers crossed

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

    Hi all,


    This is rather sad, but also inspiring. Stuart Scott, ESPN anchor, passed away from cancer, which is sad. But this is what he said before he passed:

    "When you die, it does not mean that you lose to cancer," he said. "You beat cancer by how you live, why you live, and in the manner in which you live."

    I think that's quite true and something I've been trying to do - live well, don't let cancer define who I am in my entirety, and when it's time to look back, don't regret the things I didn't do.

    Hugs to all,

    Terre

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,297
    edited January 2015

    ""When you die, it does not mean that you lose to cancer," he said. "You beat cancer by how you live, why you live, and in the manner in which you live."

    kiwicatmom,

    Thank you for posting this. I had heard it on the news this morning and meant to look up the quote. I think this clearly sums up my feeling toward living with bc, and why I waste as little time as possible in worrying and anxiety. I spend my time living, regardless of what the the final outcome will be


  • ReadingMama
    ReadingMama Member Posts: 338
    edited January 2015

    terre, I love that quote and have been telling others about it for two months. I think it is very true. I know others who don't likr to call themselves survivors and I shared this quote with them.

    Freebird, good luck with new job and I agree, I'll bet you'll have some good stories

  • annieoakley
    annieoakley Member Posts: 653
    edited January 2015

    Hello to all,

    Romansma,  I hope your pain has eased up and you're feeling a little better. 

    Freebird53,  congratulations on your new job! I think it will be good for you and I'm betting you'll meet lots of nice people. Best of luck with your new treatment too and praying it has your tumor markers tumbling down.

    Terre, thanks for the quote, how well put. I hope dh is on the mend and feeling better. How have you been doing?

    I'm off for my bone scan tomorrow. Tried getting out of it but my MO wouldn't have it. I am being scanned in February by my rad onc to see how the radiation worked so thought maybe we could do without this one. He wants me to go ahead with it so they have a new baseline. If you could all say a little prayer for me, I think I'm having a bit of scanxiety. Praying for NEP or NED would be even better.

    Shutterbug73,  praying you get to drop the taxotere! My thoughts and prayers are with you for good scans.

    Deanna, thanks for the articles you posted.  Ikaria sounds like a nice place. I wish all of our cancer would just go away the way his did. That's an amazing story.

    Hoping you all had a nice relaxing weekend. Christmas tree still stands, it will probably take me just as long to get it down as it did to put it up. Oh well, it will get done eventually. 

    Hugs to all, Annie

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


    Prayers coming your way Annie and for you also Shutterburg.  Hoping 2015 brings us all stability, NED or NEP! and no pain!

    Dunesleeper - If my memory serves me right, I think you had your PET scan on Friday, so prayers for you too and to all awaiting results.

    Freebird53 - Congrats on your job and good luck with new tx.

    Hugs to all,

    Linda

  • GG27
    GG27 Member Posts: 1,308
    edited January 2015

    Freebird, congrats to you!! Hope it works out well for you.

    KCM, thanks for the quote, I have never heard of him, but I sure like his outlook. It's how I try to live my life, easier said than done some days.

    Deanna, I haven't had a chance to look at the links yet, but I think you're right, being focused on every little thing, does us no good whatsoever.

    Annie, Good luck with your bone scan, it seems like we're getting them all the time. But I understand wanting a base line. I had one last month & so I get your scanxiety!

    Shutterbug & Dune, best thoughts on your scans too. Hope everyone else has a good painfree week!

    I'm still recovering from my infusion on Friday, but this round was much better than the last 6, so I'm hoping it just keeps getting better until I can't tell anymore that I've had one. Cheers, Dee

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

    Annie, we love you and if you want prayers, you surely will get them. I guess I have had scanxiety before, and I definitely know about anxiety and all the discomfort and disquiet that brings.

    My scan went fine except I was sooooo hungry. I look forward to getting the results. I just really want to know what is going on inside me so I can stop imagining the worst.

    I'm glad this last infusion was not so bad Dee. You're knocking them down and keeping a good attitude. I'd probably be whining all the time. You keep bam bam bamming those treatments down. I'm very proud of you.

    My eyes are getting very heavy now, so I will simply send my love out to all of you. What a great support community we have here.

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

    I'm thinking of you this morning, Annie. Sending calming thoughts and prayers for a fast, smooth scan and only positive news!!

    GG, glad your infusion went well.

    Romansma, Patty, Annie, and anyone else dealing with pain, I hope this week brings you renewed strength and health.

    And fingers crossed for good test outcomes for Dune, Shutterbug, and anyone else who is facing a test or waiting on results!

    Hugz to all... much hope for a good first full week of the new year for everyone!

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

    Sending prayers and good thoughts to Annie for your scan. And to Dune, Shutterbug, and anyone else awaiting results.

    Dee - definitely easier said than done some days, but also how I try to live. Glad your infusion went better, hope the side effects are gone super quick.

    Thanks for the kind thoughts regarding DH. He had blood tests yesterday and will see his GP tomorrow or Thursday to get the results. Still waiting on other tests. But at least he's a bit less grumpy. I love him dearly, but he is such a drama queen. I met a woman who has had cancer, lung problems, heart problems, and a stroke, and who is pretty much house-bound. And DH says, "well, tell her to welcome to the club." Good grief. We still don't know if it's his heart, lungs, or lymph system, he can go and do whatever he wants, has never faced cancer, and hasn't had a stroke. But he is now much worse off than I am - I only have Stage IV BC! :) I know he's scared - has his own brand of scanxiety, but he of course won't admit it. I just have to shake my head and laugh (out of his presence). But overall, he's doing well.

    I'm doing remarkably well. I had an amazingly good break wherein I slept anywhere from 10 to 14 hours a day, did virtually nothing except run DH to doctor's appointments and do some shopping, and flaked out on the work I was supposed to do. Of course, I'll pay for that this week a bit as I have three reports due. But I'm working from home and so I can do it on my own schedule, with no commute. I had an energy healing session with a woman I work with from time to time (she does them via Skype) and whether it's real or a placebo effect, I feel really good. My side effects have died down quite a bit and other than hot flushes and a bit of hip pain, I'm doing great. I'll get my blood work done in a few weeks and see the MO again for a routine check.

    Hugs to all....sending positive thoughts!

    Terre

  • GG27
    GG27 Member Posts: 1,308
    edited January 2015

    Oh Terre, so glad to hear that you got some rest!! :) yay! Honestly, I think some men are such drama queens, if they went through half of what women endure, they wouldn't make it. My DH, love him dearly, but he's such a baby with medical stuff, even something like a flu shot. But glad to hear he's doing better, but it would be nice to know what is causing the problems

    Hope everyone's scans have good results!

    I'm feeling much better today, it seems to take 48 hours & then I'm good. Horrible day here, raining hard & grey skies. didn't get out of my pj's yesterday, I will have to try to today.... Cheers! Dee

  • MusicLover
    MusicLover Member Posts: 777
    edited January 2015

    Yes, best of luck on scan results. I had my PET scan on Friday and I got so stressed that they called the social worker down and  I sobbed like a baby. I took Xanax the last time and it didn't help so I didn't even try this time.  I was supposed to have tx and see MO in the morning and have the scan in the afternoon but I only realized a few days before Friday that they moved tx to today.  So my scan was at 2pm and I had already had not too much to eat the day before.  It felt like I wasted the whole day and then today I had tx and they were packed because of being closed on 1/1, so another day lost. They didn't have the results from the scan yet (I didn't think that they would but my MO was hopeful).  Hopefully, I will know soon.  I am assuming it will be good because of my TM's being good since August but now I am starting to feel like I am being foolish thinking that.  I will let you all know the results as soon as I get them, especially since I feel we are all in this together and no one else except my husband seems to get it.

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

    Sending you hugs, MusicLover. And good thoughts and fingers crossed for a clean scan result.


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

    (((MusicLover))). Your post made me tear up. We so get it!!! Wish we could have been there for you on Friday. It's strange how sometimes everything can come crashing down during a procedure. It can just hit you all at once, especially when something doesn't go smoothly. I'm adding you to my prayers for great news! Deanna

  • MusicLover
    MusicLover Member Posts: 777
    edited January 2015

    Thank you.  I just got a phone call from my nurse that essentially things are unchanged, yeah! I can't view the report online myself yet but it sounds good to me. I would love to hear NED someday but STABLE is good.  I will let you know more details when I can see it.

    Thank you again! Prayers and hugs to all of you.  And strength to see us through this burden we have been given.

     


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


    Musiclover - Yes to STABLE!  Music to my ears.

    Linda

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