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Bone Mets Thread

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Comments

  • Purplegurll
    Purplegurll Member Posts: 89
    edited January 2016

    Hi ladies,

    I am new to this thread but I can see there is so much good information and support here. I learned that my BC had spread to my spine when I was diagnosed with a compression fracture a few weeks ago. I had a kyphoplasty which helped immensely with the pain. Since then, they've found a second area in my spine as well as lymph nodes in my chest. I don't think they are going to do radiation at this point, because I'm starting on xeloda and they want to be able to see if that's working. They also mentioned a monthly dose of some bone strengthening drug. I don't have details on that yet. This is my third go-round with BC. While in some ways I feel like I know a lot about treatment (chemo, radiation) I know nothing about what to expect with Stage IV. I look forward to getting to know you all. Going to hit the gym this morning for the first time in a few months for some yoga - not my fave because I have ZERO flexibility😊 but happy to get back to some normalcy in my life. Have a great day everyone

  • Myra1211
    Myra1211 Member Posts: 532
    edited January 2016

    Good morning ladies! I am starting to come back to the living. Patty, after just being in the horrendous land ooF hospital, are they making you ill?pharms and health?care have learned from the Ford Edsel to keep you hanging or go out of business. Please, please,please check this out.

    Mtg with onc team first thing this Monday morning to get this straightened out once and for all. Now I'm pissed.

    Love all the animal pics. Sorry I have been out of it, can't wait to be fully together. LOVE, LOVE, YOU ALL. Sorry I can't name you all with all your accomplishments and good news and hug you all who have Scanxiety.

    Here's one more animal pic.....his name is Ti. Rescued him that's why his name is odd. ....image

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2016

    Myra,

    What a sweet doggy. He looks to have some Shepard in him, which I love. Thank you for rescuing him. He deserves a safe and happy home.

    I'm happy to hear you are home and feeling better. Thanks too, for the update.

    Amy

  • Myra1211
    Myra1211 Member Posts: 532
    edited January 2016

    yes. Italian greyhound. Loves to snuggle

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited January 2016
    I have been off the boards for a few weeks due to anxiety. I have not been able to be supportive without being self centered and causing myself to get so upset when one of my friends post disappointing results. I actually got myself so upset after one of my member friends posted that I spent the rest of the day in bed. On a positive note I had CR scans mid Dec which showed things stable. I changed insurance so I am now being watched and treated at Dana Farber. I just saw MO on Thursday. She is keeping me on the Ibrance/let protocol for now. Remember, my bone biopsy was Er/PR neg but Dana feels it still could be. So the jury is still out. I have bone scan scheduled for early Feb. in the interim I'm a month out of rads leg is better and pain is intermittent in my upper back that is a burn type feeling. I am just finishing my 3rd cycle of Ibrance. TM are the same (27/29 is 60) no change. My alk phos came down 10 points to 165. If I press where the burning feeling is I can't feel a pain. Anyone experiencing this ever? I pray for everyone and recite all your names. I wish I was better at this but I really got upset last month. I was glad to read today that Myra is doing better and so many positive things I caught up on. Blessings to all. Love Carol
  • annieoakley
    annieoakley Member Posts: 653
    edited January 2016

    Myra, so glad to see you back posting and hope you're able to get things under control very soon. We're all thinking of you and praying for you. Beautiful picture of your dog, animals are so healing for us. Sending you love and hugs.

    Carol, I know where you're coming from and I think we all understand. It hits me really hard when someone gets bad news or one of our members passes. The passing of Carla and Dune put me in a really sad place and my family thought maybe I should step away from the boards because I was grieving so much. I feel such a connection to everyone here and it's hard not to worry about someone when they're going through a difficult time. That being said this place is also an amazing source of support and encouragement with an abundance of inspiration and that is what keeps me here. What an amazing group of women! So happy to hear you're stable and that your leg is better. Keep us posted on your upcoming scan.

    Hugs to all, Annie

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited January 2016

    purplesgurll. - welcome.

    Myra. - glad to see you home. Welcome back to the living. To looks like a great snuggler. Miss my bigdog snuggles. Now we just have2 lil ones. Love them like family but not the same as a big dog.

    Feeling s lil better today. Hate not being able to make plans til I wakeup each day. Never know how I'll feel. Want so much to be back to some kind of good normal. It's Saturday so kids are home I gotta get my makeup on. Hide dark circles on eyes and tears. Raining all day and my counts are low again so I guess I'll stay in. Thankfully several kids in neighborhood are good friends to dss. So theyll have something to do.

    Lindae. - you are on my mind. Hope everything is going great. ((( hugs )))

    Hugs all around.


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2016

    Purplegurll, welcome and we are sorry you have to be here. If you haven't already, check out the ladies on the Xeloda thread. Gentle yoga and stretching is a great way to start moving again.

    Myra, I hate hospitals too...just a cesspool of germs. And Ive had some not so nice nurses. In any case, you are home! I hope you have a productive meet with your ONC and you are on track to better health and less mets, especially those darn skull ones.

    Carol, I almost took a break too. A lot of rough stuff happened all at once. I'm actually in therapy now and hoping that helps my depression and anxiety. At some point Ill bring up the Boards.But, I'm afraid she'll tell me to take a break, too.

    Patti, have a lovely restful Saturday.

    Everyone else, happy weekending.

  • Bliss58
    Bliss58 Member Posts: 938
    edited January 2016

    Hi all, just popping in after catching up on so many pages! Too much has gone on to address individually, so I will just make some general comments. Welcome to all the newbies who will find loads of great information and support here. Enjoyed and thank you all for the pictures of pets, vacations, houses and whale video! I love, love, love whales - they are my happy place! I had a similar experience while in college at San Ignacio Lagoon with gray whales, have had close encounters with humpbacks in Hawaii, but have never seen orcas. I look forward to them someday soon on a return trip to the San Juans. I like all the new avatars, too; I need to update mine.

    Here's to all who have had great scans and results. Hugs to all of you who are struggling and dealing with pain, SEs or progression. You are all in my thoughts. Happy New Year and cheers to a better 2016 for us all.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited January 2016

    Hi everyone -

    Patty and Myra - glad you're both doing better today! Glad you're home Myra; your doggie is adorable. Patty - it is hard not to be able to plan; hard enough for me and I don't have children. Can't imagine how hard it is with kids.

    Carol - welcome back. I think we all get it. Fingers crossed for your upcoming scan.

    Purple - welcome to the thread. Sorry you have Stage IV but glad you found us. If they're doing to do a bone strengthener, get your teeth checked and all dental work done before they start the infusions/injections. My (previous) MO didn't tell me about that and I ended up with ONJ which is beyond painful and will now be a life-long condition. Sounds like you're getting good care.

    Annie -how are you doing? I know you were going through a rough patch.

    Everyone else - happy weekend in the US, Happy Sunday over here!

    Terre

  • iwrite
    iwrite Member Posts: 746
    edited January 2016

    Hi Ladies,

    Patty...I believe going back to bed is excellent therapy on some days! Myra, so good to hear from you...the dog seems like a great warm buddy! (I'm heating up bags of seed corn in the microwave and they feel great on my back :-)) Not the same as a friendly pet though!

    So good to hear about the good scans from many on this thread! Sending good thoughts to those who are struggling this week with this dx. It stinks...

    Trying an experiment today...no pain medication. I want to locate the exact places where the pain is starting so it's possible to report it at my next onc appt. Holy cow. I guess they weren't kidding about mets throughout the bones. It really does hurt to move, but it's doable...I just don't move much :-/ Thought if I could take a break, then the OTC pain meds would be more effective when I start back, plus give my stomach a break from at least some of the insane chemicals traveling that route. Made it to noon...we will see about the rest of the day. I did try a small amount of the CBD/THC drops this week during the day and could not stay awake. I may try them as a night time sleep/pain med.

    With the added sleep time these days, once a week I iron and starch fresh percale sheets for the bed. It's heaven. (Not the ironing as much as the sleeping.) if I'm going to be peeling off layers due to the medically induced hot flashes, then I want to feel something cool and luxurious on my skin and sometimes a sheet is all the cover needed. (This from the person who pre-bc wanted the house kept at a tropical temperature in the winters.) I know ironed sheets don't make it the Ritz Carlton, but it sure feels nice...and it's free skin therapy.

    Hope there is time to make some new memories with loved ones or get closer to checking something off our bucket list for all of us this weekend!

    Kathryn


  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited January 2016

    Kathryn - I giggled at your comment about the drops. I haven't tried medical cannabis (illegal here still), but I've always said that pot was not my drug of choice - all I want to do is eat and sleep anyway, so why pay money for more of that feeling? Check www.overstock.com - I got 1400 thread count sheets which are beyond yummy. Queen set for $49. You have to check back; not always available, and wait for sales, but I've gotten great deals on bedding there. I don't iron my 1400 thread count sheets, but they are amazingly soft and sheer luxury. And I'm totally with you - I'm always freezing, except when I have hot flashes.

    I need to get some work done, and then have a kitten rescue pick up in 2 hours. What i want to do is go back to bed and take a nap...

    Hugs to all,

    Terre

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited January 2016

    terre. Can't wait to hear about your kitten rescue.

    Kathryn. No way I am up to ironing so I agree ..rather pay some more for soft sheets.

    Raining hard all day here today. Is 41 right now . so 've been taxi mom for rides to friends and back today. Can't believe the other moms just letting them get soaked and then what ??? I certainly don't want all the neighborhood boys in the house wet and Muddy. Oh no. Not happening. !!!! Now they are all next door. Good and quiet time. Dh will pick up who ever wants to come home for supper when he gets off work . Very thankful for boys their own. age so close . only one in the group that I don't like. He doesn't come to often because he knows my property my rules. Kinda feel sorry for the boy.

    Hugs all

  • GoldenGirls
    GoldenGirls Member Posts: 121
    edited January 2016

    cjanet - Been thinking about you and hoping your scan results were good.

    Here's another pet pic in keeping with the recent trend :)

    image

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited January 2016

    goldengirls. Aww so adorable

  • junieb
    junieb Member Posts: 945
    edited January 2016

    I so love all the adorable pics of everyone's pups. I can't wait to get my own. Hopefully within the next 3-4 mos. Feels like forever.


  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited January 2016

    Cute doggies! Got 3 very cute kittens rescued today. A tabby with white boots, a torti with white boots, and a black fluffy one. And got their mom taken in for desexing. :)

    I have so much work to do...and a grumpy husband, so I'd best get to it. Wishing everyone a good evening!

    Terre

  • Bluefrog76
    Bluefrog76 Member Posts: 250
    edited January 2016

    Purple:

    A spinal compression fracture led to my stage IV diagnosis, too. The kyphoplasties worked wonders! I have no pain in that area and it took a lot of pressure off my hips and other areas that were feeling the brunt of the compression. I hope you continue to feel better and better.The information on this thread is invaluable. Welcome.

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

    Good morning everyone,

    Welcome to all the newbies. I am way behind on the postings, so I won't try to address each of you individually. I know that others have already told you, but I will tell you again. This thread has many, many wonderful women here to give you advice and support. They will not let you down. Also I have to repeat the advice already given, don't pay any attention to statistics. They are outdated, and we are not just data points, we are individuals. I plan to live a long time with these nasty old mets, and my onc and breast surgeon are supporting me all the way.

    Myra, I am relieved to learn that you are home and staring to feel better. Take it easy, and then follow your treatment plan and get stronger every day.

    Carol, It is good to see you back here. Sometimes I feel overwhelmed by things I read on the boards, too, but I am drawn back here because of the tremendous support I receive. This is the only place I can come and feel that people really understand what daily life is like with MBC. No one knows what is ahead for each of us, but everyone here can help us through whatever happens. We could have met for coffee last week when you were at DF. My husband is at Brigham and Women's and I take the glass-enclosed bridges from here through DF and out to my hotel.

    Did any of you complete the survey for the MBC research project that Nikhil Wagel is leading? I did and received a message from him saying that they will be following up with everyone who responded. They will request a saliva swab and will follow up to get tissue samples for the tumor. I am excited that the project is devoted to MBC. While it might not benefit me personally, my hope is that it will someday lead to a cure and will somehow discover why some people respond to treatments and become long term survivors.

    DH is still in the hospital. His bilirubin is going up again, and they are going to do an MRI to see if the stent has shifted. If it has he will have a procedure to fix it. Tomorrow marks three weeks in this place. UGH! He needs to go home. In the meantime he is off Coumadin again until we see if he needs the endoscopy. After that, he will have to start building up the level again. I am moving back into the hotel again tonight.

    Sorry I haven't addressed everyone, but I am still way behind. Have a joyful peaceful Sunday.

    Lynne

  • Myra1211
    Myra1211 Member Posts: 532
    edited January 2016

    so sorry Lynne

  • Wendy3
    Wendy3 Member Posts: 872
    edited January 2016

    Lynne I sometimes wish I had more medical knowledge so I could give some clever words of comfort and advice. I'm sure some of the other ladies do, all I have is compassion and love and that I am sending you virally in spades. Make sure you take good care of yourself food and rest. He will need your strength when he gets out of the hospital. Spring is not far away and I truly believe in the rejuvenating strength of longer days and springs growth. Remember all things are possible when love is present.

  • Wendy3
    Wendy3 Member Posts: 872
    edited January 2016

    Cjanet how did your scans turn out? Thinking about you and wishing good results

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited January 2016

    lynne. 3 weeks is a long long time in the hospital. Continuing to pray for your dh recovery and for you too.

    Brr. Freezing here today. Like 20. Staying in

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,345
    edited January 2016

    Lynne,

    Sorry to hear about a bit of a setback for your husband. Hope things improve very soon. So much time in the hospital is no picnic at all.

    Yes, I got an email from Dr. Wagle and am looking forward to helping in any way I can.

    I hope everyone is enjoying a peaceful day

  • mimipickle
    mimipickle Member Posts: 160
    edited January 2016

    Lynne, I got the email from Wagle too. I hope your husband gets better soon. I appreciate hospitals but they get old really fast.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited January 2016

    So we got the Ibrance/Letrozole - Ibrance is running $10,000, Dani only has a copay of a few hundred, insane. I read med articles, and there are studies for Paclitaxel instead of Letrozole, any one heard of it?https://scifeeds.com/news/one-two-punch-of-palboci... it was from the Links that I think Deanna posted the other day. What say you.

    Patty you are doing smart taking care of yourself. Re the kids, rules are just fine. You gotta keep sane

    Myra good luck with the MO. Do you know if you have HER2+ also? I saw you have ER+PR+ but what about the HER2? I am trying to see from the ladies that are TRIPLE POSITIVE who did try Ibrance/Letrozole, because it's really recommended for HER2- , so I would love to hear from those that are positive and that is working.

    Bosco love it, I have quotes all over the place in my house.

    Annie feel better sweetie. And thx.

    I know you guys are next to me, it gives me strength. Tomorrow is BT again,

    I went an hr away to meet with Radiologist, he basically showed me the scans are pretty much the same, 2 areas are a bit larger, in the skull and on the left quadrant. The rest (the whole skeleton) is pretty much as it was. I had to see for myself.

    Could you tell me what time of the day it's better to take Ibrance, I read here that lunch time is better? She is starting tomorrow. And would you think it's ok to start tomorrow with her vacation in 3 wks, won't she be too tired at that point.





  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2016

    start of the new year. Deductible needs to be met. Pharmacy is asking for $4,000.00 for this months Ibrance. That'll cover my yearly deductible, but OUCH.

    I take my Ibrance after dinner because it makes me tired. Too early in the day and I feel sleepy all day.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited January 2016

    Hi all!

    Lynne - all I can say is "bugger". Three weeks sucks! Setbacks suck! Sending prayers and hugs.

    And I got the email too. Saliva tests only for US and Canada, but since my tissue samples are all in the US from my primary, I'm hoping they can use/access those. Exciting stuff to see some progress.

    Momall - no advice but sending hugs.

    Wendy, cjanet, Iwrite, Dee, Deanna, Myra, Caryn,,,everyone... sending good thoughts.


  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited January 2016

    PS...Kitten rescue success...here's a couple of photos. The fluffy kitten spent last night on my pillow. She's much prettier in person than in the photo. She's now at a rescue place awaiting foster placement, as are the others.


    image

    image

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited January 2016

    Hi ladies...just to let you know that December 23rd I had Gamma Knife done to 19 brain tumors and 1 skull mets (forehead right above my right eyes...by temple). The skull mets above my eye would throb and there was a bump. My radiologist said when going for the brain mets he would get the skull metastases above my eye. There are several other skull mets that were not touched. I can feel a few of them. I'm just happy for now the brain tumors are gone, and I'm more steady on my feet. No pain! Really no side effects. I also learned that I've a lot of bone progression even in areas that were previously radiated. I am back on Xgeva. I hope it works. Right now my treatment is weekly Herceptin and daily tykerb (1 pill a day due to side effects).


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