Bone Mets Thread
Comments
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Dune, if I were you, I would simply call John Hopkins. Here are a couple of links:
http://www.hopkinsmedicine.org/breast_center/
http://www.hopkinsmedicine.org/breast_center/team_...
Explain that you are Stage IV currently in tx, and want a second opinion from someone who specializes in mbc. They should take it from there.
Alternatively, you might want to use the search feature here to see if any specific oncs are mentioned... or... start a new thread w/in the Stage IV forum, asking who other Stage IV gals going to JH use. Most insurances these days allow second opinions, but if you have any doubts about needing a referral, then call your insurance provider and double check if you need one, as Myra suggested.
Karz, love the photo! Your daughter is adorable, and the hiking terrain is very beautiful too!
Patty, I hate when you take something and it keeps you awake! Been there, done that, and it can be worse than simply not sleeping. Hopefully, you can still catch a couple of hours of zzzzz's before your sister arrives! So happy she's coming! Her visit sounds like the best medicine for you right now! And we all need the kind of sleep Susan describes! I'll have to look into your combo, Susan.
Annie, so sorry about your pain level right now! I hope your docs can sort out what's causing it.
Rachel, welcome -- although I'm so sorry about your dx. I was first dx'd in 2008 (Stage II)... mets since January 2014... so going on 7.5 years in all. I'm very hopeful that the next few years will see amazing tx breakthroughs that will continue to blow today's survival stats out of the water. Just be sure you have an onc who is on the leading edge of research, etc., and speaks in those positive terms.
Quaatsi, welcome and sorry about your dx and what you're going through right now. You didn't mention what drug(s) you're doing. Could it (they) possibly be contributing to your emotional state? As others have said, it's very hard in the beginning, especially if you're in pain, which certainly contributes to that going downhill, hopeless feeling. One thing that helps me at times is getting away, even for a weekend. I find it helps a lot to get out of my normal routine and to be around people who have no idea I have mbc. I think it can be especially difficult with friends because you need them to recognize that you have some very big challenges right now -- challenges they will never fully grasp -- but you also don't want that to be your identity. So it can be very lonely and frustrating, trying to find the balance with them between sharing what you're going through, but not burdening them with stuff they don't really understand anyway.
Hello & hugs to everyone not specifically mentioned simply due to this post becoming lengthy, and not wanting to flip back beyond this page. Deanna
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Thanks for your suggestions Myra and Deanna. I apologize for not addressing everyone. With not feeling good, I have not felt like messing with my computer and y'all know about losing posts. I will make more effort and use my computer which allows me to make notes <br>
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Hi, Dune! You look a bit wiped out. Can't imagine that you were out at a show a few night ago. Keep us posted on your progress on getting a second opinion.
Just wanted to mention something I thought of when I was just out walking -- something Patty's post about getting her house ready for her sister's visit made me remember. Are you all aware of Cleaning For A Reason? Just thought I'd pop back and give you a link, if you're not, or if you'd forgotten about them. http://www.cleaningforareason.org/ I think the only time I ever called them -- back in 2009 -- they weren't active in our area yet, and now I'm fortunate enough to have help (one of my early concessions to my Stage IV dx, realizing I just couldn't do it). But I think they've grown a lot since 2009, and if they're available in your area, I think they'd be a huge blessing!
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hi all
I continue to read daily and feel great support from this thread.
Karz Sounds like a lovely weekend. The picture of your hike was great and looks like one of my favorite hikes in washington state.
Patty I hope you find your way. back to good sleep. My newest method to induce sleep is to put headphones on and lsten to an audiobook. Then my dh usually carefully removes it once I am asleep.
Annie. So sorry about. your pain. I. am glad you were able to get out and enjoythe show.
Quaatsi Welcome and sorry for the dx.I relate so much to what your post said. My husbands first coping instinct. is to shut down. I feel like its work each day. to keep things normal for those around me especially my kids. My saving grace. is my sister/bestfriend who I can say anything to at anytime. many times I find. myself parked in my car somewhere on the phone to her in tears. She listens and thats what I need. I do my best to return the grace.
Dunes
You have given many words of encouragement in the past, please feel free to relax now. You have gotten lots of good advise on second opinions. Feel free to pm me. if you want to hear about my experience.
I have plans to call my MO tommorrow about increased pelvic pain hip pain rib pain and shoulder pain. I am always debating if it is neurosis or real but I will let. the doctor help me figure it out.
peace to everyone
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Quatssi, welcome and so sorry about your diagnosis. The stuff that comes along with a Stage IV diagnosis is frightening and it's not always easy to be positive and upbeat. We do the best we can, some days are better than others. Don't be hard on yourself for feeling this way, we've all been there. Sending you healing hugs.
3-16-2011, I did enjoy the show, it was incredible. I think I drove the lady next to me crazy as I kept moving in my seat, couldn't get comfy at all!
Dune, best of luck with your new chemo, praying it's gentle on you. I'll be there holding your hand in spirit. Thanks for the picture of your beautiful smiling face.
Myra, how are you doing? I'm so happy for your good news, I hope you did a little celebrating.
Hugs to all, Annie
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Quatssi, I was dx'd in January of this year, 9 years after my original dx. It was shocking because I felt so confident it wouldn't come back. I am usually the rock, the one everyone else goes to when things are difficult, but this really threw me. For the first time in my life, I experienced panic attacks. I couldn't wrap my head around the fact that I had no pain, no clue that anything was amiss, yet I had active cancer. I declined chemo the first time around, so my very conservative (but brilliant) MO had me see him every 3-4 months over the 9 years. Last summer my TM's were up and by early winter they were above normal. Then came more tests, scans, etc., and the day after New Year's I got the final results of returned BC and bone mets. So I was feeling fine but being told I have incurable (at this time) cancer. The more I struggled with that, the worse I felt. I found this thread, and it helped me formulate some good questions for my next MO appointment. These women have seen or been through a lot, and they are such a support! My MO prescribed Ativan for my panic attacks, but they stopped after he clarified that there are many treatments available and more coming down the line. He sees this more as a chronic condition that can be managed for a long time. So with that in mind, I just decided to try to live my life and stopped trying to reconcile how I feel with what's on paper. I've been on monthly injections of Xgeva and daily doses of exemastane (Aromasin), and I've had no problematic SE's, and my TM's went from 99 to 44 in a month, now at around 21. A couple of things I thought might be SE's weren't, and are really something else. I did start having terrible insomnia that really ground me down, and my MO said he felt I was mildly depressed. He prescribed a very low dose of an antidepressant, and it has made all the difference in the world. It's very subtle, but now I sleep and I feel like myself again. I know you don't want to take any more drugs, but sometimes they can improve the quality of your life tremendously. This disease plays with your mind, and that just adds to the distress. I don't take the Ativan anymore, no more panic attacks, and no more insomnia with this new med. My MO did a lot to ease my mind about my longevity. It's never far from my mind that I have cancer, but a little medication and a very good, optimistic MO has made my life a whole lot more normal, whatever that is. And the women here get it, they really get it. They've been there and done that, and they are generous with their information, suggestions, and compassion. Don't hesitate to seek their support. I read here daily, but rarely post because I don't have much experience with this yet and I've been busy with my university teaching, but they have made a big difference in how I'm coping with things. They understand when no one else quite gets it.
Sorry this got so long, but I hope everyone is having a good day!
Sharon
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Hi, I know this group is for a higher stage then mine but had a question. I have been worried sick. I have extreme shoulder pain in my shoulder. Keeps me up at night. I have had a frozen shoulder a couple years back but this is worse. I was dignosed with Stage IB grade 3 triple negative breast cancer in June of last year. I had a bilateral mastectomy due to having previously having Hodgkins Lymphoma in 92 with Radiation Therapy. I finished chemo for Bc in December. I had 4 DD AC combo then 7 of 12 pacitaxel. Dr stopped the pacitaxel because developed neuropathy. I had a bone scan 2 1/2 months ago before my shoulder started and it was clear
Could Bc metatsitize in that time?
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Hi jscresteds,
Unfortunately, there is no time period, long or short, when bc can or can't metastasize. You can hear many different anecdotes, but bc behaves as it chooses. Please see your doctor to set your mind at ease and have them consider a PET scan. There is also a thread for those who have not been dx'ed with mets but are worried or have questions. Check it out and take care.
https://community.breastcancer.org/forum/8/topic/7...
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Jscresteds, so sorry you're in pain. It's highly unlikely that bone mets would appear just 2.5 months after a clear bone scan and so soon after finishing chemo. One thing I'm not clear on though and perhaps others here know... Do bone scans also image lungs and liver? If not, and assuming there's no injury explanation for the shoulder pain, then perhaps a PET or CT scan in the near future would give you some added peace of mind.
Good luck, and please keep us posted. Oh, and there's also a thread here for those not diagnosed with mbc but have concerns like yours. Feel free to cross post there for more input. (((Hugs))) Deanna
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Deanna. - thanks for the link. Will def check it out.
Dune. - looking good. Don't worry about not addressing each of us. Rest and heal. Relax.
Well my sis should be here in about 30 min. So I can't address everyone either. But I have read everyone's post to catch up. Hugs all around dear friends.
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quatssi...so sorry about dx. There are many ups and downs physically and mentally. I have been on this journey for a long time...which is a good thing.....it has also given me time to be at peace, for now that is. I keep Valium in the house, cause if I get a crazy panic attack, that appears out of nowhere, I can get relief. That is how I look at this, if I can get relief, I will do what it takes...I have learned to embrace all the other drugs that can help. I am lucky that I am not predisposed to any addiction, so I don't have to worry about that. I did take antidepressants for 5 months while I was on one of the chemos. When we switched chemos, I went off that drug. I eventually came to a place where I decided it was more important to me to have a good day. That looks different for all of us. Usually excercise and having fun works for me, but sometimes I have to pop a pill.
Good luck finding that happy place balance
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Sharon, I could totally relate to your story! I was 7 years out from a stage 2 diagnosis and thought the fight was over. The mental shock of bone mets has been very hard to deal with. I also could not believe that I was so sick and yet felt fine. I have learned a lot from these boards and I also have a very optimistic onc, which really helps. I am also on Xgeva along with Ibrance and Femara. It truly is something you could never explain to someone who isn't going through it
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After deconstructing bilateral implants in April, 2015 my pain improved by 75% enough so that I could discontinue Oxycodone and Oxycotin which I'd taken since February 2013. I stopped cold turkey and while it was a long week, I did it. Now I'm suffering pretty excruciating left hip pain and upper right shoulder pain. I reported this to my onc last week who didn't seem too concerned so I guess I'll wait for my next PET/CT scan in two months, however I have to say I just started retaking Oxycodone 5 mg once a day and it's soo helpful. The pain is manageable enough so I don't have a limp and I can sleep at night without waking up. I don't see any trouble with doing this, and I'm only taking 1 per day. This shouldn't be enough to start another cycle of dependency, do you think?
Amy
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Sorry, Amy, no experience with Oxycotin, but hopefully what I assume is a considerably lower dose won't cause a problem, since it sounds like it's greatly helping with your QOL, including sleep. But grrrrrrrrrr to any onc who doesn't seem concerned about excruciating pain!!! When was your most recent scan?
I wanted to let everyone know that I've just compiled the list of contact information I've received so far. If you would like to be on it, please PM me yours -- basically the best way to get ahold of you in case you are hospitalized or just going through a rough patch for whatever reason and haven't been posting. Include an emergency contact, if you wish. This is just a way for those of us who might worry about you to reach out in that sort of situation with a phone call or a card.
As others have noted, there is also a central address book here on BCO, which serves the same purpose. The Bone Mets members list is just something I thought would be quick to access if and when someone hasn't posted here for an extended period -- like our dear Carla, who I am concerned about, but hoping she's back from OR and will pop in soon! I'm also wondering about Chris1959, who hasn't posted here in awhile, but who I know from another thread had surgery on July 1.
Feel free to PM me if you have any questions. Thanks. Deanna
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Just sent you a PM with contact info. Let me know if you need other info. Thanks!
Amy
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Amy, I don't think 5mg once a day is going to start a cycle of dependecy, and if you need it you need it, better than suffering. About the deconstruction, I cannot tell you how many times I've felt like I want to rip these things out, so I can totally understand your decision. Sometimes they feel so tight and I feel restricted in my breathing, other times they just hurt. I have experienced some very bizarre sensations. Saw my PS a few weeks ago to check for a contracture but he says everything looks and feels great, sure doesn't feel great to me.
Terre, just wondering how you're feeling? I hope you are better and have been getting some rest.
Sharon, nice to hear from you. Glad you are doing well.
Patty, enjoy your sister's company, I'm sure you're having a great time.
Dune, did you start the new chemo today? Thinking of you and praying you're feeling well.
Hugs to all, Annie
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chris1959 posted on FB this past Thursday. She said she was doing well and hoped to get out of hospital on 7/3. I hope she's home and healing with little discomfort
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HI ladies,
I had a nice Fourth, still wrestling with pain management and I fired my pain management clinic as I didn't like the way they were treating me. But the pain is manageable.
I so appreciate all of you on here but its so hard for me to remember everyone's names. I still have to catch up to post anything more specific and I'm so tired. I might post more tomorrow. I had blood drawn today so let's see where those TMs go, up or down.
I am definitely not trying to avoid certain posts, I just keep quiet if I have nothing to contribute, I don't ignore. Off to read a little more before sleep.
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Caryn, thanks for letting us know about Chris, I had posted on her thread as well as Deanna and Patty I think hoping she would let us know how she was doing. I hope she's dealing with little discomfort as well.
cjanet, nice to hear from you and glad you're managing your pain. No worries about not addressing anyone specifically, it is hard sometimes to keep up with all the posts. We're here for you when you need us and I'm praying your tm's are down, down, down!
My pain is a little better today but I plan to rest and not over exert myself, I really do not want to feel that again, it was crippling and really scared me.
Hugs to all, Annie
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ditto to reconstruction isn't all that it's cracked up to be. Wish I didn't do it too. But as the saying goes, don't know till you try. If I didn't do it I prob would have wished I did.
Annie, I still haven't found a balance of how much I can do. When I feel good it never dawns on me that I could do to much and end up in bed for a few days. My friends call me a blockhead
Have a peaceful day everyone
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Susan, you're definitely not a blockhead. I was a whirlwind of energy before this, even with my MS, nothing slowed me down. This is a hard pill to swallow, I may have overdone it which my husband says I did but I feel I barely accomplished anything. Sometimes I feel like just standing on my own two feet is overdoing it, things get that painful. I hate this and I'm having a hard time adjusting to it. End of rant. The sun is beaming through my window, going to have my coffee on the patio and take in the beauty of the day!
Wishing everyone a pain free day! Hugs, Annie
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Thank you all for the reassurances about taking Oxy and my QOL. It does help. My last scan was Sept. 2014 and since the pain in my hip isn't getting worse I'll bite the bullet and wait.
Annie, I cannot tell you the number of times I just wanted to claw my implants out!! They were so uncomfortable, so unnatural and so painful. I feel I gave them a fair shot. I tried saline and smaller silicone but neither ever agreed with my body.
Chris, I hope you are healing and feeling much better. Can't wait to hear from you.
Amy
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I read here but rarely post. My Aunt gave the college try with her implants and bailed. I have met a few who said they were just painful and uncomfortable and removed them. I never went for reconstruction. I think you need to accept what your body tells you and not feel like you "failed" anything, just got more information after the fact. Amy life is too short to be uncomfortable. Enjoy the relief from the meds and carry on with a happy heart. You are taking care of yourself! No stigma or shame. Love the photo of you in the kiddie pool! Oh those Midwestern summers!
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Susan and Annie, your comments re. the energy level frustrations of mbc really resonated with me! And it's something that's so hard to communicate to those who aren't going through this -- the fact that after a few hours of doing anything (except sitting), I absolutely must sit down and put my feet up to ease the aching and find some energy again. And if I push myself (which I constantly do), I might be wiped out for the next day or two. It can be so frustrating not being able to accomplish what it seems like we should, and/or knowing we're headed for trouble when we do. Plus my DH and DS tend to overreact when I get those energy dips and treat me like I'm sick or helpless, which makes it worse!
And sorry to hear the comments about implant problems. I went with Diep recon (left side only), and while I couldn't be happier with the totally natural result, I sometimes wonder if that decision (long story I won't go into) delayed chemo too much. It's always easy to second guess our choices with hindsight.
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Hi all,
Back from a few days out and so much going on here.
I had so much fun but am completely wiped out today, so much for energy levels. I ache all over.
Welcome to Rachel and Quatsi. Glad you found us but sorry you have to be here. It sure is the best place to share what we are all going through.
Sorry, too tired to respond, but wishing everybody a pain free day. I will take some extra pain meds today and rest. Aredia infusion tomorrow. Also, when I signed up this a.m., I found out that JustJudie and Wilsi (not sure of user names) passed away. It gave me such a blow, I can't find words.
Hugs and love to all - Linda
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Hi! I poke in and out of this thread from time to time but have a hard time keeping up. Maybe I need some Ritalin so I can keep up! Hope you are all managing and even enjoying yourselves this summer!
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Linda, welcome back! Glad you had alot of fun but sorry it wiped you out. Get plenty of rest before your infusion tomorrow. Yes it's very sad to hear of JustJudie's passing, but I did not hear of Wilsi? Where was that posted because I have not seen it. Hoping your pain eases up quickly.
Romansma, nice to see you come back here. How are you doing? Enjoying summer as much as I can and planning small trips here and there that I can handle.
Hugs to all, Annie
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OT - we discovered a bunny nest buried in the mulch of a new tree smack dab in the middle of our backyard. We had to fence it off to keep our doodle dog from getting in there and disturbing the nest. The mother bunny apparently is enjoying the treats I've been leaving out for her so she has crafted a couple of peep holes for us to view into the nest and look at her adorable babies. I can't believe she was so trusting as to "nest" in our yard, especially with a big dog, but our dog is a gentle soul and she must have known it.
I'll post photos when I can get a good shot.
Amy
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Amy, can't wait to see the pic, we have lots of bunnies in our yard too, they're so adorable!
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Hi Annie - I started a thread for Wilsie2. I was enquiring about her last week on the death and dying issues thread. Wilsie used to post there quite a bit there. Her passing was mentioned on that thread and SlowDeepBreaths kindly did some research and pm'd me with the info. Sad.Sorry you're not feeling too well either. I added a few extra meds on the menu today - starting to feel better. But this heat is vicious and the humidity as well. It doesn't help.
Romansma - Welcome back!
Linda
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