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Bone Mets Thread

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Comments

  • jobur
    jobur Member Posts: 495
    edited May 2015

    Hi AnnieO,

    Glad to hear those TMs are down.  I'm with Linda, don't sweat the low WBC unless it continues.  Do you get blood work done every month?

    Thank you for asking, I am doing okay.  Trying to get used to my new tx and it's ses.  Also trying to get my flower beds planted before it's fall again!  When we first bought this place, a younger, healthier me went crazy with beds here, there and everywhere. Now old, slow-as-a-slug me has one heck of a time trying to keep them up.  It is my one passion though, so not ready to give it up just yet.

    Hope the weather cools off a bit and gives you a bit more energy. 

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


    Hi all,

    Just came back from my Onc.  Everything is stable.  I am soooo grateful.  Weird how this crappy disease behaves.  TMs going up then down again, pain flares come and go etc.  Mind boggling.  So now, 2 months off before I see the Onc again and bone scan and CT in September.  Thank you all for your support.

    Milaandra - Good to hear from you and your good news!

    Qixian - Best wishes to your Mom with the tx she chooses.  I never had high phosphate levels but do get high calcium levels because of mets.

    Hugs to all.

    Linda

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

    Hooray, Linda!!!!! And great news, Milaandra! I agree with Annie. Fusion sounds like exactly what they were after, to create a stronger bone.

    Qixian, here is a good explanation of the Alk Phos test. A high Alk Phos reading was one of the first tip-offs to my bone mets, but as this article explains, it can be due to other things as well. Mine went down into normal range as soon as I started on Anastrazole. http://www.livestrong.com/article/298946-elevated-...

    Hello to everyone else, and a special (((hug))) to Dee. So sorry about the previously unknown spot over your left eye and the need for more tx. I'm sure the distance you have to travel makes everything so much more exhausting. Since you have 4 appts in the same week -- assuming they're in the same area, can you possibly stay closer in that week?

    Sorry if I've missed anyone! That's never my intention! Deanna


  • Myra1211
    Myra1211 Member Posts: 532
    edited May 2015

    Hooray Linda! Myra.

  • jobur
    jobur Member Posts: 495
    edited May 2015

    Linda, So glad to hear the s word, stable that is!  Now you can enjoy most of your summer with no scans and no onc visits.  Yea!

    Hi Milaandra, I don't think we've "met" before (no pun intended, really!) but glad you got good news on your scan too!

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

    Deanna , jobur., dune - hey ladies

    Linda - stable ! That's great. And walking with no cane. Yes. Things are looking up for you. Sweet

    Terre - glad the flu is finally gone. Stanley fir you also. Yea ! Like your onc saying you sre his greatest success story.

    Dee - stable also!!!! Yes !! except the eye, darnit. Hope they can get it controlled soon. Yes sometimes a break is required. Come back soon

    Annie - yea. Tumor markers dropped again. Great news.

    Looks like good need is raining on Most Very exciting. No wonder it's been so quiet.

    Hugs to all I missed.

    I have been having crazy migraines which makes me think my thyroid med is still off. We can test again mon. Hoping we up the med ( if nec) them I'll feel much better. My ds's are out of school for the summer. Friday was their last day. So their first week of vacation has been didn't watching me be miserable. So not what I wanted. Today's been better and they have had a couple neighbor kids over and they spent the entire day in the pool. Lots of laughing and no fighting. ( very unusual with 4 boys playing together ).


  • annieoakley
    annieoakley Member Posts: 653
    edited May 2015

    Hello to all, 

    Linda I have to say I am ecstatic about your news, I honestly truly felt you were going to be stable! And you're right, this crappy disease messes with our heads! Enjoy the next couple months, I for one am always thrilled to get a break from having to see my oncologist,  as much as I like her.

    Jobur, I get my blood work every 2 months now because my infusions are every 2 months. I talked to my nurse today and you and Linda were right,  she said not to worry unless it continues. I will call my onc in the morning and discuss my concerns with her, maybe she can put my mind at ease. I hear ya about the flower beds, just when I had my husband make our front flower bed larger and add one at the side of the house I was diagnosed with MS, and suffered horribly with leg spasms. Needless to say they're not quite as nice as they used to be but I do the best I can. Mostly I just tell my husband what I want done and he's happy to do it for me.

    Patty, I sure hope you can get rid of those migraines and are able to enjoy the summer with your boys.

    Hello to everyone else, Annie

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

    Thank you so much ladies. I am a very happy camper, and would be even happier if we could all have good news all the time. Don't know what I would do without you all.

    Linda


  • Karz72
    Karz72 Member Posts: 102
    edited May 2015

    enjoy the two oncologist-free months Linda!


  • JFL
    JFL Member Posts: 1,373
    edited May 2015
    Hey all! Does anyone have experience or know anyone who went NED from EXTENSIVE bone mets? I am not talking a few lesions here. I am just curious (and having a moment of wishful thinking for the future). Although my pain has improved tremendously, I am sitting here, feeling my back and ribs right now, wondering if it ever goes away. I have been doing a lot more in the last two weeks (more cooking, dishes and running around from place to place, entertaining guests, holding the baby, sitting in uncomfortable chairs that are not my own comfy office chair for work) and my back has responded accordingly. It seems that many women here have better luck getting to NED in other organs. My doc said that it takes a long time for bone mets to heal. 6 months to a year/year and a half or longer, even with good response to meds. I definitely had more rapid response so far to my extensive liver mets, although both bones and liver are responding to treatment. Just curious if there is hope . . . .
  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2015

    JFL - I had quite a few bone mets. Enough that I had to get a rod put into my femur so it wouldn't shatter, mets in spine, rib, hip. Plus lots of small hot spots all over my pelvis and spine. I'm now classed as "no evidence of active mets" and "stable." Also, I'm showing healing in my bones. So, it is possible! Keep the faith!


  • Momonana6
    Momonana6 Member Posts: 154
    edited May 2015

    Hi ladies, Thank you for all the SE response on Xgeva. It is really hard for me to sort out what may be a Se to Faslodex vs Xgeva......anyway much better now and moving on to scans next week....need to sort out confusing reports re any progression in the lung...".grr. I have been really fortunate to have had "status quo" . Hope all who have upcoming scans have good news. Today it is time to finally get some of those annuals planted. Have a great weekend. Peg

  • Bosco19
    Bosco19 Member Posts: 177
    edited May 2015

    has anyone suffered from v low platelets? White blood cells OK. My count dropped to six and nothing they are doing at the moment is increasing it. It may be auto immune thrombocytopenia ( essentially immune system destroying platelets) . I'm taking Gemzar, Cisplatin Zometa Avastin and Keytruda at the moment. Onc had just been saying how well it was going...


  • ibcmets
    ibcmets Member Posts: 312
    edited May 2015

    JFL: I have spinal bone mets from the start in 6/09. When my mets are active; I'm in pain, but getting them spot radiated has eliminted the pain for me. I had to do this 3X's last year. I was stable for 4 years on Femera and now on Aromasin. Affinitor gave me too many side effects and a lot of progression.

    I heard bone mets was much easier to treat than organ mets.

    Terri

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

    Hello ladies. Can't believe it's Sunday evening already. It rained all weekend and I have had a crazy terrible migraine every day for awhile now. Tomorrow I finally get to go give lab and see if my increase in synthroid has gotten my thyroid straightened out. I seriously doubt it will be correct. I slways have terrible migraines snd exhaustion when it is too low and I am praying that's the cause. In the back if my mind ( which won't shut up late at night when everyone is in bed ) I am petrified it's progression to my brain. Been trying not to go there. Crazy mind body connection. Wish there was a disconnect. I certainly will feel better after we get lab results and it shows my thyroid still off.

    Haven't seen dune around. Has anyone talked to her ? Hope she's ok.

    Hugs and hellos all around. Hope all had a great weekend.

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

    Hi, Patty - So sorry about the migraines. I know from experience that too much thyroid med can cause those. If you haven't inadvertently doubled up on a dose or two, maybe just the increased dose itself is the problem.

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

    Deanna. Hello. Hoping you are correct. How are you ?

  • jobur
    jobur Member Posts: 495
    edited June 2015

    Patty, hope the thyroid med is the problem and you are able to get it straightened out so your migraines go away soon.

    Isn't Dune on her river cruise?  I'm hoping her and Mom are having the best vacation ever.

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

    jobur. Thanks. Good to know sbout dune. I agree hope they are having a blast.

    Wow again so quiet. Wonder what's up ? Must be all those stable scans got people out and about ?

    I went snd got my lab this am now just a couple more days wait for results. Hoping praying thyroid is still off. Yeah I know I've mentioned this a few times. Sorry. Trying to keep the progression worry out of what is reality. So ds1 went to work today with dh to earn some extra money. It's just me and ds2 today. Wishing he would hurry up and wakeup. Planning on spending some quality 1 on 1 time with him. I've felt so badly lately we haven't got to do more than just snuggle or watch tv together. Today I am Hoping to play some board or card games with him , watch him swimming in the pool ( still too cold for me to get in. Brrr ) , make spaghetti dinner and a dessert ( he loves to cook ) , read a good book together and maybe organize some pics for printing to put together a scrapbook ( I am terrible about all my pics on my phone ) and whatever else we get into. As long as we don't have to ride anywhere ( too dizzy from migraine to drive ). Oh yeah and d nap for me in there somewhere. Lol.

    Hope to hear from y'all soon. Miss the chatter.


  • annieoakley
    annieoakley Member Posts: 653
    edited June 2015

    Hey Patty, sounds like a great day you have planned. Enjoy it and hope your migraine goes away. I've been struggling with a lower back ache that has had me a little miserable this weekend. It was 90 degrees on Friday and dropped to 50 on Saturday, Sunday it was 40! Only in Canada do you have the air conditioning on one day and heat the next. My goodness my body can't handle the sudden temperature drops. Another cool day here today, grey and damp. Summer please come back! I did go and see an awesome show at the Casino last night, these guys were so good they made me forget about my back ache for awhile 😉.

    Hugs to all, Annie




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

    Annie / sorry for your back ache. The sudden temp changes always do that to me also. It is unseasonally cool here also. Yesterday and today's high is like 70. Unbelievable. Who did you see at the casino ? Anyone we might recognize ? Anyway glad you got out to do that. It certainly does our bodies well for us to be happy and laugh.

  • jobur
    jobur Member Posts: 495
    edited June 2015

    Annie0, Don't feel like you are alone with your weather, same thing here in Wisconsin!  Turned the ac on last week, temps in the 80s (F) and high humidity.  Now back to turning the heat on the last couple mornings. Have had frost warnings and lows close to freezing!  Looks like summer is coming back later this week, hope it helps your back!Nice pic, you & DH I presume?

    Patty, 70 is unseasonably cool in June?  You must really suffer when summer arrives.  Have a great day with DS if/when he wakes up! 

     

     

  • annieoakley
    annieoakley Member Posts: 653
    edited June 2015

    Patty, can I have your Arizona 70? That's my favorite temperature,  when I feel the best. The group we saw at the Casino was called The Company Men, a group of 4 young guys with incredible voices, and they could move too! Google them, I didn't know what to expect but boy was I pleasantly surprised. How did your day go?

    jobur, not that misery loves company, but yep same thing going on here weather wise. I hear the sun will come out tomorrow ☺, isn't that a song? Seriously though suppose to warm up by Wednesday. And yes that is dh and I in the picture, last summer at Blue Mountain in Collingwood. 

    Hope everyone is having a good day, hugs, Annie

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

    Hey girls,

    Same thing with the weather here in Quebec and so windy. Not good for my bones!

    Bosco - I hope they find something for your platelets. Never had any problems myself.

    Peg - Sure hope you sorted out the medical reports and glad you're feeling better. Best wishes for your results - keep us posted.

    JFL - I have multiple bone mets and have been stable since my dx with hormone blockers. I wish I could say NED, but stable is very good for me.

    Patty, I feel for you with your migraines. I've had them since I'm 11 years old. My twenties and thirties were the peak for migraines and less when menopause came along. It has to have some advantages! And don't let your mind wander too much.

    Annie, I heard of that group and my sister saw them. She absolutely loved it.

    I'm still feeling very good and I touch wood every day. My only complaint is that I sleep too much with those pain killers and my concentration could be better. I admire our metsisters who still work, I think I'd get fired the first day LOL.

    I hope Dune and her Mom are having a blast on their cruise.

    Jobur - was it you who had problems walking and could not find the cause. I may be mistaken. In any case, I sure hope you're doing well.

    Sorry if I missed anyone but sending hugs to all.

    Linda

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

    One more thing - very nice couple Annie.

    Linda

  • annieoakley
    annieoakley Member Posts: 653
    edited June 2015

    Thanks Linda, I am rather fond of him and he's such a loving hubby!

  • jobur
    jobur Member Posts: 495
    edited June 2015

    Linda,

    Yup, that's me with the walking problem.  Have an appointment with an onco-neurologist in mid June.  This will be neurologist #3, so I'm afraid to get my hopes up too high.  I have always had the feeling that if the right Dr. looked at the right imaging they would be able to see the problem.  "Fixing" it would be another matter.  It's been over a year now that I have been walking with a cane, but it's still so hard to accept. I used to walk 2 miles in 40 minutes, now on a good day I walk 1/4 mile in 1/2 an hour. Hope I'm not making you sorry you mentioned it, but I really appreciated it that you remembered.

    I'm glad to hear you are still feeling good.  Maybe if/when summer gets that far north it will help you sleep less?  Maybe not, our bodies seem to need lots of rest to fight this crud. Yesterday was beautiful here, so sending it north to you along with a big hug!

    Jo

  • Bosco19
    Bosco19 Member Posts: 177
    edited June 2015

    Linda

    Thanks for the thoughts on platelets. Just had 5 days in hospital. I am a terrible patient but they were pretty terrible - for example, my discharge papers say I have mets in lung and liver - which I don't!

    Anyway, platelets now 31 (normal range 150-400) so I am hoping they will have improved further so I can have chemo this week.

    Hope everyone has been following the news coming out of Chicago at ASCO - my onc is v excited about it.

    Wishing everyone a pain free day and stabil


  • Milaandra
    Milaandra Member Posts: 154
    edited June 2015

    Annie, that's why I emigrated! People laugh at me when I tell people I moved to Scotland for the weather. :)

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

    Bosco, I'm curious exactly what news your onc is excited about. Do you know? I just flipped through the info here, and didn't see anything pertinent to breast cancer. Would love to know something hopeful and positive! https://am.asco.org/daily-news

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