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Bone Mets Thread

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Comments

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

    hydranne - hope Mondays infusion goes smoothly. Will be thinking of you


  • HopeFaithCourage
    HopeFaithCourage Member Posts: 80
    edited July 2015

    Happy 4th to those that live in the states!

    I got a letter that since I will start receiving disability in Sept my health insurance cancels August 1st because we make too much money. So I need to find private insurance for my family I can use my disability check to pay for. That money was needed elsewhere badly but I'm not going to dwell on that. Any suggestions for purchasing health insurance would be v wonderful. I've got to keep health insurance long enough to start and stick with a treatment plan. I've only had this state insurance since May or something like that. Geez!

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

    hope - when that happened to me I had to go on cobra insurance. Super expensive but it worked til medicare kicked in.

    Dune - did you go see magic mike 2? Just curious how it was and how you did . thinking of you

    Good morning all. Its 5am and I am wide awake. Even after all of yesterday's activities. Def a sign I am doing so much better .yea ! Today is another busy day we are celebrating father's day since my boys were in tx on that day. Then tomorrow my sister ( not sure who all she will bring yet) from Alabama will be here . She has stood by my side always. So excited to see her.

    Hope everyone has s great day. Hugs all around

  • annieoakley
    annieoakley Member Posts: 653
    edited July 2015

    Good day to everyone,

    Hydranne, best of luck with your infusion Monday and I hear you about the back pain creeping in as the day goes on.

    HopeFaithCourage, I hope you get the insurance thing sorted out, I have no advice because mine is through OHIP and everything else is through dh's insurance plan. I know it can be expensive though so I hope you find something reasonable. 

    Patty, you go girl, wow you've been a busy girl and up early too! Glad you made it through the day without too much pain. 

    Well I'm hurting pretty badly today. After our 2 days away and dh's birthday celebration yesterday I can barely move this morning. My back is really really sore. I probably shouldn't have done house cleaning and laundry before everyone came over. Tonight I have a show at the Casino, Battle of the Voices. It's the guy from American Idol and also someone from The Voice and apparently there will be different singers and the audience gets to vote. I hope I feel ok to go, just really down right now. 

    Dune, please check in. I hope you were able to make it to go see Magic Mike.

    Hugs to everyone else here, Annie


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

    annie. Hello. Sorry for all the pain. I usually do the same thing. I hope you make it to the show at the casino tonight. Sounds like fun. Do you live in Las Vegas ?

    I Ususlly Wear myself out cooking and cleaning for company and then am down a couple days from overdoing it.Truthfully don't even think the company noticed I cleaned oven ,windows,moving furniture etc. Just too crazy. We keep house clean enough I shouldn't have to go crazy cleaning everything but yet I do. Yesterday I didn't bother with it and felt great. Today just doing very light cleaning with a lot of help from DSS to get ready for my sister to arrive tomorrow. Also I am not going to the store and buying way way too much food. The grocery store walk and loading , unloading groceries is so very hard on my back. Dh had done pretty much all the grocery shopping for 2 years. Now that I am doing better I am trying to take some load off him. But I know my sis always goes to the store while she is here. No telling what all she will cook. My sister always comes in and takes control. Won't allow me to help at all. She will do all the cooking, cleaning, laundry etc. I am going to let her. Just means I'll b awake without the pain pills and be able to visit with her more. She is only staying 3 days so I wanna make the most out of each hour.

    Its quiet on here today. Did everybody overdo it yesterday? Or is everyone still celebrating ?

  • annieoakley
    annieoakley Member Posts: 653
    edited July 2015

    Hey Patty,  I'm still here, just sitting on the patio enjoying a bowl of strawberries. I live near Niagara Falls, Ontario and we have 2 casinos and because my uncle likes feeding the slot machines they repay him with free tickets to all of these shows. Every one I have been to is amazing, tonight my eldest daughter is joining us along with my sister, and we're all going for dinner beforehand. Dh just helped me finish up all the laundry and I'm not doing another thing today! I'm excited for you to have your sister come visit, that will be so nice and yes let her pamper you and just enjoy some quality time with her. Can't wait to hear all about it!

    Hello to everyone else here, hope you're all enjoying a relaxing day!



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

    annie - oh that sounds fun. Is it just the girls going ? How old is your eldest Dd? Are you the designated driver? Yum yum. Fresh strawberries sound delic. I sliced some up this am to eat with the fathers day brownies as Dh requested.

    Hello. Anyone else out there today ? So quiet here except my long winded rambling.

  • Xavo
    Xavo Member Posts: 244
    edited July 2015

    Thanks, Hydranne.

    Deana, read the article. Your UCLA onc, Dr. Hurvitz, is totally exciting and full of good news. I think the componets of your treatment team could not be more ideal. You are positioned right at the cutting edge of sciences and technology and receiving the best care possible in the eitire world!   

    Bright Sunday to everyone!

  • annieoakley
    annieoakley Member Posts: 653
    edited July 2015

    Patty, my eldest will be 24 in October and it's just us girls going with my uncle but we're treating him to dinner beforehand since he's so kind to share these tickets with us all the time. My sister is designated driver, I get to sit back and relax.

    Hello Xavo,  a bright Sunday to you as well!

  • AmyQ
    AmyQ Member Posts: 821
    edited July 2015

    This is me in my redneck pool today. My friends with real pools are doing other things. I say a girls gotta do what a girls gotta do on a hot day!image

  • annieoakley
    annieoakley Member Posts: 653
    edited July 2015

    Amy, I love it and would have to agree, you gotta do what you gotta do to get through it. Sizzling hot here today too and not feeling the greatest, maybe the humidity is making my pain worse. Enjoy your day, Annie

  • Rachel1
    Rachel1 Member Posts: 80
    edited July 2015

    I was just ( five wks ago) dx with bone mets. This was on what was to be my 5 year anniversary since original dx. Can you tell me if there are any of you with many years out 5, 10 who are still here? I am Aldo BRCA 2 + and don't know if I should be getting some kind of parb inhibitor. Thanks in advance. I'm scared.

    Rachel

  • Rachel1
    Rachel1 Member Posts: 80
    edited July 2015

    I was just ( five wks ago) dx with bone mets. This was on what was to be my 5 year anniversary since original dx. Can you tell me if there are any of you with many years out 5, 10 who are still here? I am Aldo BRCA 2 + and don't know if I should be getting some kind of parb inhibitor. Thanks in advance. I'm scared.

    Rachel

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,354
    edited July 2015
    Hi Rachel,
    Yes, the beginning is very scary. This weekend marks 4 years since my original bc dx, thought to be IIB, but even before I was healed from surgery, my bone met was found. Clearly, I was stage IV all along. As I begin my 5th year, I am doing well and lead a pretty normal life. I don't know enough about your bc to offer anything, as far as treatment, but I wish you well. Most importantly, there is lots of hope for many of us at stage IV. If you make your signature line public, with details of your bc and tx, some who have experienced the same can comment. Take care.
  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited July 2015

    Amy. Looks relaxing. Enjoy !

  • AmyQ
    AmyQ Member Posts: 821
    edited July 2015

    It got to 90 today so relaxing and cooling off in my pool made the day easier to take. My DH ended up joining me...it was fun

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

    amy. No skinny dipping I hope. Lol.

  • 3-16-2011
    3-16-2011 Member Posts: 279
    edited July 2015

    amyq thanks for. the picture I have a very similar pool.

    Rachel1. Sorry to hear of your dx. I am also brca2 positive and wonder about parb inhibitors. There is a brca thread and I have gotten information there about parb inhibitors there and I continue to talk to my MO about it. I have had a good response to extemestane so as long as it works I will stay with it. My mets were found about 7 months ago, so fairly new to this myself. In the beginning I did travel to a NCI designated hospital for a second opinion. I really like and trust my local MO and he supported the second opinion.

    Good luck and wishing you peace.

  • susan3
    susan3 Member Posts: 2,631
    edited July 2015

    don't know where the femera came from, back a few pages. I am 3 1/2 years with recurrence. Been on 7 different chemos in that time. Like the one I am on now. Very tolerable . 14 years all total fighting cancer. Started with tamoxifen then femera, but I became resistant to all hormone treatment, so my only options now are chemo. Somewhere in my head, I sometimes think the chemo will kill me before the cancer does. Who knows....right now I feel great, you know, considering.......

  • Karz72
    Karz72 Member Posts: 102
    edited July 2015

    So much to catch up on after my long weekend!

    Thanks for all the love & welcomes ladies :-)

    A few things I want to comment on -

    All those in North America - hope you had wonderful Canada & Independence Days!

    Patty - OMG I would also want to throttle that child! But as you have been advised already & especially with your son asking you to not contact them, perhaps a short chat with the teacher to understand where that child is coming from? If my 6 year old is ever in tears after playground fights I do tell her that most times, if someone is being nasty its because they're very unhappy / insecure themselves. Not an easy lesson to follow but a good place to start.

    Amy - nothing wrong with a redneck pool Happy I buy a new one every summer (they don't last long with kids & dogs) & they are great for wallowing in on a hot day.

    Dune - sorry about the progression & hope things go well with the new regimen.

    We had a lovely weekend away, perfect weather, fab company & way too much food. I even managed a run down the mountain road with jog/walk back up with my super-fit sister & an hours hike on the trails. Have to say that my chemo & zomedron have worked amazingly, back before dx & tx I'd have piercing pain in my hip & limp for days if I tried to run.


    image

    Here is my little one (pink princess) & a friend's daughter rock-hopping in the mountain stream.

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

    karz. - glad you had s great time away. Your dad looks like she is having fun. Thanks for giving your opinion & suggestion on my DSS terrible text.

    Well I didn't sleep even a wink last night. Between the excitement of sis visit and pain in back from overdoing it s little. Fixing to take a pain pill and try to catch some zzz's before the get here around 1. I took one last night and they usually make me sleepy but last night it didn't help the pain but it did amp me up all night. 😴

  • susan3
    susan3 Member Posts: 2,631
    edited July 2015

    pp, I have been having hive issues, so I have been taking benedryl. The benedryl with my sleeping pill is a magic formula. Don't even get up to go to the bathroom. I have soooo much more energy during the day now. Not sure if that is a "ok" combo.....but if was a lucky find for me. Haven't seen 2 and 3 in the morning for a couple weeks now. :

  • annieoakley
    annieoakley Member Posts: 653
    edited July 2015

    Rachel, welcome but sorry you have reason to be here. I hope others who are also BRCA2+ will be along to help you. I know it is a very scary place to be but as exbrnxgirl said there is lots of hope for many of us at Stage IV. 

    3-16-2011, glad to hear you're having a good response to exemestane, and long may it continue. 

    susan3, glad to hear you're feeling great considering all the chemos you have been on. 14 years fighting cancer is a long time for sure. Keep up the fight,  you're doing great!

    Karz72, great picture, your daughter is adorable. Good for you doing all that! Glad the piercing pain in your hip subsided with treatment. 

    I'm still in a great deal of pain and even though the show at the Casino was great, I was having a real hard time sitting in the seats, finding my legs and feet going a little numb. Now I'm not sure if this is my MS or the stupid cancer. The met on L5 really bothers me but my onc doesn't seem concerned cuz tm's keep dropping. Then why so much pain? And my legs hurt so bad, I just feel like crying, I know that won't help things.

    Hope everyone else is having a pain free day. Hugs to all, Annie

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

    Annie I hope you were able to go to the show. Oh, I see you had to deal with pain while at the show. I hope it didn't keep you from enjoying. I was able to feel ok enough to see Magic Mike 2. My friends picked great seats where I could shift position while I bought an enormous lemonade. Yum yum. I thought the show was very funny. If you go with that in mind you won't be disappointed. I'll be getting chemo in about 2 hours 15 minutes. Who shall I be sitting with? I hope it doesn't make me sick. I am quite afraid of trying this new stuff, but hopefully I soon learn there is nothing to fear.

  • Quaatsi
    Quaatsi Member Posts: 270
    edited July 2015

    hi-- not sure if this is the place to come but well, here I am. I was dx with bone mets back in February and while I was going through the beginning part of everything plus radiation I felt hopeful. As time has gone by I feel like I am sinking into a morose abyss. I have a young son who is acting out and i realized I am disappointed that I cannot spend this time with him--since he needs to do "his own thing" and my husband is a pretty shut down person--never has been much of a partnership. I have friends but lately, I don[t want to be around them in case i "infect" them with my "attitude". I find that contrary to my normal persona-- i just don't care about much of anything. I can't live like this and since everything around seems bleak, i don't know what to do. no drugs...I won't do antidepressants...no more drugs.

    I need my smile back-- anyone else feel/felt like this? Q

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    Annie, sorry you are having so much pain. MS on top of BC, my goodness how much can one person take? I hope you get to the bottom of this.

    Patty, have a wonderful time with your sister.

    Karz, adorable kids and lovely pics. I am so happy to see all of us living life to the fullest we can.

    Rachel1, I was 16 yrs post original dx of stage III when bone mets raised its ugly head exactly one year ago. MO and ortho MD and Rad MD and NP all are very reassuring that I could be here another 10 years, and hopefully longer as new meds come out.

    Good day to all. Myra.

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

    Yes Q, I have definitely felt like that. The best treatment for that (that I know of) is to go out with those friends. Make plans to do something, and if you should find you are feeling down while you are out with them, then explain. If they are really friends, they will understand and will give you time to feel better again. I find it to be a bit of a roller coaster ride (but not as wild ). The other gals here can tell you more I'm sure. I suffer from dreadful shyness and depression. They get out a lot!


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

    Patty, hope you got some sleep. Myra, it's a bummer of an anniversary, but you are definitely staying on top of it. Someone has mentioned getting second opinions. I think you, Myra, mentioned something about Hopkins. I think I should do it. How do I go about it, if you don't mind my asking and showing my stupidity?

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    Charlotte, call the physician referral service. Then check out the MO on Health Grades or Google his credentials. Another way, when u are at ur infusion ask the nurses. No one knows the reputations of good doctors like the nurses. The only other way I know is call your breast surgeon and ask for referrals at Johns Hopkins.

    Does anyone else have any other suggestions???

    Good luck! Myra.

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    P.S. I forgot the last thing you are doing is showing stupidity.

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