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Bone Mets Thread

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Comments

  • 3Holly
    3Holly Member Posts: 201
    edited November 2015

    Thank you Dee, I was surprised it didn't work, but maybe it's just not effective with bone mets. I can now take a limited amt of ibuprofen - but only every other day, since I had blood clots on the lung and now am on blood thinner shots (at first they told me no ibuprofen, but onc changed that at my last appointment to every other day - twice). I think I will try to get a prescription for Tylenol with codeine since the Tylenol doesn't do much for me anymore.


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

    Good article with some good news:

    http://www.king5.com/story/news/local/stories-wort...

    18 year survivor.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited November 2015

    Terre, thank you for the inspirational post.

  • Rachel1
    Rachel1 Member Posts: 80
    edited November 2015

    Do only active mets hurt or do radiated old ones hurt as well?

    Rachel

  • saucychiq
    saucychiq Member Posts: 17
    edited November 2015

    KiwiCatMom what an inspirational woman! It was uplifting to watch her move about her life in the way that she does, thank you for sharing that with us.

    Thank you all for sharing your stories, your experiences and lives. I hope to accept and provide within this forum as I'm beginning to understand what a large part this community plays.

    Love and light to all,

    Karen

  • saucychiq
    saucychiq Member Posts: 17
    edited November 2015

    Rachel,

    I wish I could provide a definitive answer but I'm pretty new to this and I know that there's plenty of knowledge and experience within this forum. I too am curious to see what the answer(s) is/are as I've yet to radiate and wonder if there's a way in which you can identify what is what.

    Breath deeply...

    Karen

  • saucychiq
    saucychiq Member Posts: 17
    edited November 2015

    Milaandra you mentioned dandelion root. Do you know if it's provided in a tea form or extract in the clinical trial?

    Karen

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

    Rachel - mine all hurt, radiated and non radiated. Some days they don't hurt much, some days they hurt like mad. And the Femara side effects cause pain as does my arthritis, which has gotten much worse on Femara. Hard to tell which is which. But it does get easier with time in that pain tends to freak you out less.

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

    Terre,

    Thanks for the link. She is an inspiration and my new idol. I love her irreverent sense of humor and her view on living wiwth stage IV. I also understand that like may long term survivors, no one really knows why but oh, how I wish we did. I have,BTW, claimed I couldn't do the dishes because I have stage IV :)

    Rachel,

    My bone met has been inactive since rads over 4 years ago. Sometimes I get a twinge or pulling sensation in the area, but can't really say what it's from. How recently did you have rads?

  • Rachel1
    Rachel1 Member Posts: 80
    edited November 2015

    Terre,

    I finished rads in the middle of August.

    Rachel

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

    Rachel - ditto what Terre said. As a matter of fact, I'm having rads tomorrow to a spot that's been already treated with rads.

  • chelleg
    chelleg Member Posts: 396
    edited November 2015

    I have been away for far too long to be able to write a very thorough post.

    Auroaya- I'm so happy thing went well!

    Dune- we were in Estes Park Co. Not to far from Denver, but a great getaway.

    Lindae- I'm so,sorry to hear that life is dishing out some horrible blows, but I can't help but believe that you are better off without him!!

    Carol- how are you coming along post surgery? Haven't heard from you lately.

    Myra- Mallory is beautiful! Growing so fast.

    Terre- thanks for the link ! I need to hear those stories. Sometimes I'm fine others a sobbing pile of uselessness. Yesterday I had a major meltdown. I cried almost all day long. Tamoxifen is making me crazy! I also started my period. I thought that I was going to stop bleeding. Any info? I love you all! And wish everyone a pain free low anxiety week

  • txmom
    txmom Member Posts: 221
    edited November 2015

    Hi Everyone, been super busy this week. Went to CA last weekend, home one day, MD Anderson vacay (ha ha) and then chaperoned a high school swim meet in Hill Country. Finally home, ahhh with the flu! Blah! Too much party, party. ha ha So I'm all caught up...LindaE, my husband goes to my appointments at MD with me and everytime my MO thanks him for coming and supporting me. After a few appointments, my husband asked her, "Why do you thank me for coming to my wife's appointments?" She told him that so many women don't have support, spouses/partners can't handle it and women are left alone. It really stunned both of us. My heart just hurts for you. I'm sorry and hope your sister is able to provide the support you need and who knows what the future holds for you. Myra....she is so adorable. Squishy. Yummy. You are so lucky.

    Holley Kitchen posted a story today about an 18 year mbc survivor on FB today. Check it out. It's very hopeful. Hope everyone has a great week. XO

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited November 2015
    I am so sorry for not posting, it took me a half hour to catch up reading... I get so anxious when I read a post that I have to skip to see if everything was ok and then go back. It is awful to get behind. I don't want it to be about me and I felt so bad reading that not only do we have to deal with the "C" word, but we have to deal with hurt in relationships. So sorry Linda .. and then that cute little granddaughter of Myra pops up and some how makes you smile. I am blessed, I have 6 of them, all under 5 years old.

    I don't know how I am doing. Still can't walk great and only with a walker. Rads start on Wed. I met with new MO on Friday. When I had my first bone biopsy done in October it came back ER/PR neg but Dana Farber didn't buy that it is negative so I am on the Ibrance/Femara treatment. Well, bone biopsy again from the rod insertion came back exactly the same again and I got this news on Friday. New MO said he would not jump ship yet on Ibrance/Femara as I am just about done with first round. My first BC 18 years ago was ER/PR + and they claim this is slow moving so he will check TM again on me the Monday after TG. MY 27-29 was 44 and he wants to see if it went up or down. He said Triple Neg usually will go to soft tissue and mine is only bone so I have my fingers crossed that when they break down the bone for pathology (mine area all lytic) that they loose the ER/PR. That was Dana Farber's take on it. I have Ibrance pills left to take. I feel pretty good as far as not being really tired or nauseous but do get those weird headaches but they seem to be getting better. I also sneezed and broke my rib again... so they are going to zap the lytic lesion that is there. It is so tiny that it took them forever to find it, but it is causing me more pain then my leg right now. My leg feels better but that must be from the rod insertion as the pain is much less-

    I also managed to get an UTI that I had no clue that I had that grew some weird bacteria that I have to get infusion at home now for that.

    One thing I promise each and everyone of you, each night you are in my prayers. Once I get feeling better, I will do a better job in keeping in touch.

    Love, Carol
  • annieoakley
    annieoakley Member Posts: 653
    edited November 2015

    Carol, so good to hear from you and glad that your leg is feeling better and the surgery was a success. Sorry about the UTI, hoping it clears up for you quickly. I absolutely dread them and am prone to them with my MS. I had one that lasted 6 months and every time the bacteria changed. Please keep us posted as to how you're doing and best of luck with the rads.

    txmom, welcome back and hoping you get over the flu quickly. Sounds like you had fun though. 

    Chelle, sorry you had a sad day yesterday and these anti-hormonals can sure do a number on us. As far as I know Tamoxifen doesn't cause your periods to stop. My friend had her period the whole 5 years she was on it. 

    Hugs to all, Annie

  • txmom
    txmom Member Posts: 221
    edited November 2015

    Chelle, at my last appointment my MO said Tamoxifen is an estrogen suppressor that I still need the shot of zoladex to stop my period. I get a zoladex shot every 3 months.

  • chelleg
    chelleg Member Posts: 396
    edited November 2015

    txmom, thanks for the info ladies! I will definitely be asking for the zoladex!!!

    Annie - my sister had M.S. Hers was the chronic progressive kind. Seems she always had a uti. Only antibiotic that worked for her was cipro. How on earth do you handle the stress? How old are your girls? My older girls are very sweet and becoming almost nurturing to me. Most of the time I'm feeling fine. But they spoil me, and make me sit down and relax. So cute! Love and hugs to everyone. Chelle.

  • DaughterLove15
    DaughterLove15 Member Posts: 46
    edited November 2015

    Hi all, first post here on behalf of my mom. She was diagnosed with Stage 1, node negative, IDC, ER+/PR+ in 2011 and treated with radiation and a lumpectomy and has been on Tamoxifen since. She is also has BRCA2 mutation and I'll need to go through genetic testing myself (I'm 28).

    Recently found out its mestatstized to her bones (seems like at least the hip) although she isn't telling the family (including me) until after the holidays. I've been sworn to secrecy from my father. Therefore, I don't know the extent of what's to come until she goes through biopsy this week. I know she's likely going through much of the emotional roller coast many of you first felt and this thread is helping me cope with the unknown until she tells us. She's acting as if nothing is wrong (blaming her hip to arthritis) but she's been sad for a long time.

    At this point, hoping to see what the best case scenario is I can pray for given the facts I now know.

    I'm hoping I can introduce her to this support group once it's all out in the open. It's going to be a tough holiday season and days to come.

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

    Oh my 40 mins!! tried to get it all as to be able to catch up.

    LindaE - I think ur post really got me going.....I gotta stop shaking first, in a way I should be nice and sometimes ppl have weak moments and NNOOOTTTTTT, no, my inner inner soul says NO. The guy is a weakling if you ask us. AND like you said this is not even the heavy lifting, are you kidding??? guys like these, a dime a dozen. The best movie apropo came to mind - 50/50 - IF you watched it you know, if you didn't pls do, download whatever, just go for it. It's made for you. Mylaandra where does the line start?? Terre i am right there with u. 3 Holly - u said it "character" ain't got much of that this guy that is for sure, may I dare say it turns out you are lucky you found out now?? Betty Rollin - First you cry, loved it, i think you'd understand it. Linda you give so much to so many, boy oh boy, he is a real looser. xoxoxooxo

    Terre fantastic news!! Of course it changes the mood here to hear good stuff.

    Wendy it would drive us crazy too, to wait for scans. Like everyone has been saying here, 6 mos prob for those that are not havg symptoms but if something is not feeling right, Dani rather wanna know so to be able to do something. 3 mos was her sched for a long time, and now it's gonna be barely 2 mos, bcs she's gonna start a more aggressive tx and with so much going on they need to know if THAT is workig, there is NO time to waste. I'll b honest with u, at this point, radiation is NOT the thing that scares us the most, and she is careful in actually getting Radiation, like only if in a lot of pain or infringing in an important..., there is plenty radiation at the airport and flying between cities, so go figure.

    Dune - thx sweetie, so nice to see you posting, keep it up.

    Au - wow, what a scare, at least they will be in their best behavior now, good luck!1 and keep ur eyes open.

    Annie, Rachel - anxiety is my second name these days. Milaandra, your feelings are so real, I could tell when Dani starts thinking much about it, she calls me every few mins, did we ck this or that, u sure they know what they are sayg, why are they sayg this or that, why it's taking so long, and I try to navigate the real world w a bit of fantasy, otherwise we just can't. Doc just gave me something to be able to sleep better,bcs i really could not sleep and then I can't function well and he said you will need to make a big decision, you gotta have your head straight. I wish she would take something, but she hates to be drugged.

    Chelle, what a bummer, those down days? It's tough, tamoxifen did not help Dani, not one bit. She was dx w mets, taking tamox, so as soon as she had a full oophorectomy/hysterectomy, was devastating for ME, to see my little girl, but in so many ways was better, she does not get her periods which she loves, and she was able to go on many other tx that they give only to menopausal women. Yes, there was the flashes(still), but she is truly unbeliavable and she works it, what can I tell you.

    Tomorrow TM's again, will know the results tuesday , then we'll see if a/t changed on that at least.

    I see in this thread everyone taking Ibrance is Her2- and she is Her2+ as of the last biopsy,they are saying on DR. Google that it works on Her2+ also, BUT it was really meant for Her2- so I hope they know what they are doing, because he will be using this tomorrow in conjunction with a bunch of other stuff. Of course, I will try and ask tomorrow.

    Lynn at least you got some answers, i feel that the waiting game really takes off years. How is he taking it??

    Hydraane, so how did you do it? to get e/o names??? I know I did not mention all of you, sorry.

    Deanna- still away?

    Patty- resting?? Myra - oh mallory, she brings smiles.

    Txmom - yep you are a lucky lady. That is how it should be, for better or worse.

    Check on you ladies tomorrow.

  • junieb
    junieb Member Posts: 945
    edited December 2015

    Hello Ladies,

    This is my first post to this thread. I was DX with stage IV mets in August of 2014. My initial BC was 23 years earlier at age 31. The mets is in my T11 vertebra. I am presently being treated with Faslodex & IBrance, plus I get Xgeva every 3 mos. I also have osteoarthritis & Fibromyalgia. In regards to pain management I use Relafen (a prescription anti-inflammatory), Tramadol and hydrochodone. This combo seems to work well for me as long as I don't go out and overdo it like I did yesterday. Then I have a sleepless night and a couple of days trying to get pain back under control again. My next bone scan is on 11/19.

    The Ibrance has caused me a lot of nausea and stomach issues, which Zofran did nothing for, so my oncologist has prescribed Omeprazol & marinol, but I've read some of the possible side effects of the marinol and am concerned I'm going to walk around like some zombie or something.

    My last Faslodex injections were on 11/12/15 and my next appointment in December happens to be on my birthday. As I was walking out of the clinic last week I told the nurses (jokingly) that I expected balloons next time to soften the blow of having treatment on my birthday. However, I'm thinking I might just take balloons myself as a way to celebrate ANOTHER birthday.

    When I got my Dx last year I told people at my church, but with the exception of 1 lady who has primary liver cancer, and one retired oncology nurse, no one ever asks how I am doing or how my treatment is going. It's rather disappointing, but from reading some of your posts, its seems normal.

    Also, when I went to the hospital last year I'd had plans of getting a new puppy, but put that off for fear I wouldn't be around for the puppy's whole life. However, with the encouragement of my oncologist and a couple of others, I have decided to go ahead and do it. I have no family and the puppy will be great company and give me a purpose to get up every morning to take care of him.

    I look forward to continuing to follow along with you all.

  • Xavo
    Xavo Member Posts: 244
    edited November 2015

    Welcome, Jazzy! You have every reason to get a new puppy. What kind of puppy is in your mind? I always want one but never have had one. Your case has so many interesting aspects. You were so young at the first diagnosis. The time between the two diagnoses is so long, 23 years! Your mets is in one single bone. No wonder your onc encourage you to get a new puppy. Good luck and good night!

  • saucychiq
    saucychiq Member Posts: 17
    edited November 2015

    Hi Jazzy!

    It feels strange to welcome you since I'm only a few days into posting on this forum. Nevertheless welcome, sorry to see you here but I think that you will find the solace, inspiration and strength you'll need to navigate. I'm excited that you decided to get a puppy, this animal will make all the difference in your world. I have two angels...my French Bulldogs Bernie and Deakin. They supported me during my initial bout with BC and are thankfully here to help out again. They provide all the love in the world and many comical moments throughout the day. It sometimes is uncanny how these funny moments show up. I'm so grateful.

    Enjoy your pup!!! Best wishes and keep posting.

    Karen

  • moderators
    moderators Posts: 8,793
    edited November 2015

    DaughterLove-

    We want to welcome you to our community here at BCO. We are so sorry to hear about your mom's diagnosis, but you're in the right place for support and advice, especially from our very welcoming and knowledgeable stage iv community. Hopefully your mom finds the same support and encouragement here. Please keep us posted on what you find out, we're thinking of you.

    The Mods

  • junieb
    junieb Member Posts: 945
    edited December 2015

    Thanks Xavo & Saucychiq for the encouragement. My favorite breed of dog is a Cairn Terrier (Toto). I had one before for 14 years, and am looking forward to this new one. As you know some days are better than others energy and pain wise. On the tougher days I question myself as to whether I can do the whole puppy training stuff, but then I make myself remember how much joy and companionship they bring and then I'm good. Besides the puppy stage is short lived.

    Besides the BC, I've also had primary bone cancer at age 40 (chondrosarcoma). That was dealt with surgery only. No other types of therapies. Crazy stuff I tell you.

  • Milaandra
    Milaandra Member Posts: 154
    edited November 2015


    Hi Karen, the trial is using an extract that is reportedly 5 times as strong as anything you can find in a store.  They are using it on terminal patients who have no other options at this point.  I'm just really impressed they are doing studies on natural substances!

  • Wendy3
    Wendy3 Member Posts: 872
    edited November 2015

    Daughter love and Jazzy welcome welcome sorry you find yourselves here but everyone here is determined to help I've found kindness and acceptance here. Also a lot of good advice and inspiration they help on those dark days and the bright ones. Daughterlove check out the video Terre posted so much hope. June yes the marajuana oil tastes absolutely horrible yuck...that's why I get it now in capsule form . Txmom I know what you mean at my bi monthly onc appointments the woman are mostly alone. I was alone as well when I was told that it's stage four. I will never forget that day...now I drag Andreas to every single appointment. Jazzy my dog gets me out three times a day at least into the fresh air and nature. She fills my heart with joy when I see her happy it's a great idea to get a dog. The more love we introduce into our lives can only be good for us. Milaandra im very hopeful with this type of outside the box thinking. I believe it's what will save us in the end. Will be interesting to see what comes out of it. Chelle is the sun coming out in Colorado today..I find that helps me. These rainy days are horrid for my happy meter, snow would be nicer even than this grey. To early to hang some lights?? I wish all you ladies a healing wonderful day. Terre thank you for posting that video I will be thinking about it all day. Will make the family watch it to , there is always hope.

    Wendy

  • Lindalou
    Lindalou Member Posts: 598
    edited November 2015

    Good Morning All,

    First, welcome to all the newbies. You will find a wealth of info and support here.

    LindaE thinking of you and good luck with rads today.

    Myra, Mallory's cheeks are adorable.

    Lynn, When is your dh's MRI? My husband and I feel the same about entering retirement with health issues. First it was me and then he was diagnosed with prostate cancer. Our friends are out traveling and telling us how wonderful retirement is. We do feel resentful at times.

    Auroaya, Heres hoping the antibiotics will do their job and you can head home.

    3Holly and Dee, I forget about the Tylenol Ibuprophen combo. I need to give that a try.

    Loves...sneeze and broke rib? UTI? You've had enough.

    Dune, I may go get a cane. Someone mentioned Hurrycane? I have to look that up. A friend took me out for lunch yesterday and I was not pleased to use a walker. She asked my why I didn't get a handicapped parking tag? I just can't do it......know what I mean?

    Thank you for all your well wishes. I'm doing a bit better this morning and have decided I need to take pain meds on a regular basis. ( duh) Kidney stone has finally passed. I called Amgen yesterday who makes Xgeva and yes there have been some reports of severe hip pain with Xgeva just like Zometa. I'm just one of the lucky few! More scans soon to rule out mets to hip.

    Ok, my post is way too long. Good week to everyone with less pain.



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

    Good morning all,

    Daughter love and Jazzy - a warm welcome to you both but sorry for the reasons that bring you here. This is a wonderful place to get info, knowledge, support and humour in between. Keep us posted and jump in any time you want. We will answer your questions as best we can. Daughter love - we would be very happy to have your Mom in this support group.

    Carol - I'm so happy to hear from you. UGH on UTI and that sneeze! Glad your leg is better and give yourself a bit of time with the walker. Soon you will be able to use a cane and then probably nothing. I hope you get more detailed info from pathology soon.

    Chelle - I was on Tamoxifen for 5 months and was moody with it.

    Myra - thanks for the pic of Mallory. It put a big smile on my face.

    Mommall - you know I'm always thinking of you and Dani. I haven't seen that movie but I will look into it.

    Lindalou - glad your pain is better and that you decided to take the pain meds regularly. Staying ahead of the pain is the way to go!

    So much going on this thread - sorry if I miss out names, but I read everything and have good thoughts for each and everyone of you.

    Update on ex BF: Got my answers - would be inappropriate to post in a public forum. Suffice to say keep those slaps coming from all us estrogen deprived ladies! All your comments were right on! And yes, I'm better off without him.

  • 3Holly
    3Holly Member Posts: 201
    edited November 2015

    LindaLou, so glad the stone has passed, hope you get some pain relief soon.

    Loves, sneezes are my worst enemy - my boys love mashed potatoes, but I'm allergic to the peels and go into a sneezing frenzy every time I peel potatoes. Last sneeze did so much damage I can no longer stand for long. I guess I will have to give the boys a peeling lesson! Praying that your infection clears up soon and that you get some good care.

    Just realized my MRI tomorrow is at 9:30 PM! Didn't know they booked tests so late, good thing I checked the printout, I assumed it was in the morning!

    LindaE, good riddance to the BF, sounds like you are much better off without him!


  • leggo
    leggo Member Posts: 379
    edited November 2015

    Linda, so glad you found out "why". Whatever the reason, it will make moving on a whole lot easier. Hugs.