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Bone Mets Thread

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Comments

  • Bosco19
    Bosco19 Member Posts: 177
    edited February 2016

    Maria

    Welcome to you and your mother.

    I get puffy ankles too. When I am sitting for a long time, I do the exercises they recommend for plane trips(rolling ankles, flexing calves etc). I am also a big fan of reflexology to get the circulation moving which I have about once a week. And I sleep with my feet propped up on a pillow. As always talk to your doctor.


  • Maria_Spain
    Maria_Spain Member Posts: 19
    edited February 2016

    Hi Again and thanks for the warm welcome

    In fact i didn't want to expose my mothers problem to help momallthetime (maybe I didn't reply to her post, and opened a new question, sorry)

    I read momallthetime just some posts before and I wanted to tell her a possible cause of the ankle swelling. Maybe that could help momallthetime to look for a solution. Of course, first thing is asking a doctor!!

    I've been reading you for some weeks and decided to share that experience from my mother.

    I'll try to drop by from time to time to read, ask and if possible, help anyone I can


  • txmom
    txmom Member Posts: 221
    edited February 2016

    Hi Everyone, I'm 4 pages behind...although I did see Bluefrog got a new fur baby, congrats!  I also saw that Annie got good scan news.  Yay!  Just popping in to say hello, I think about everyone everyday and hope everyone finds some joy and pain free time this week.  XO Dana

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

    wavung Hi. Love the pup pic. Aww. Been down and out flat on couch couple days. Yuck. So tired.

  • Bluefrog76
    Bluefrog76 Member Posts: 250
    edited February 2016

    Thanks for the warm welcome for Mac. I've walked more in the past 48 hours than I've done in the previous two years. It has felt good to be moving so much and I've spent so much less time in my own head.

    Susan: welcome to the board. I echo everyone else. Getting on a treatment plan really helps. I was blindsided by my diagnosis, but in a really good place clinically and emotionally 6 months out.

    Patty: so sorry you are feeling down and out. Hope things start looking up soon.

    Lynne: I hope you can get a little bit of a break today. You have to be so drained. I used to work in Kenmore Square. Maybe you could even see a movie to give your mind a rest. Brooklyn is very good if it's still playing.

    Bosco: thinking of you.

    Wishing everyone a good day.


  • LovingIsLiving
    LovingIsLiving Member Posts: 89
    edited February 2016

    Hi all, thank you for your kind words and advice. He went in for the infusion this morning and they said his blood work was good enough to take the treatment. His fever broke by this morning and he is feeling a little better, thank God. He sent me a picture of his almost empty IV bag of Doxil and I broke into tears. Thank you all again. I will keep you updated. Xoxo

  • Bluefrog76
    Bluefrog76 Member Posts: 250
    edited February 2016

    Loving is Living: so glad your brother was able to have treatment today. Hope he is feeling better.

  • Partyoffive
    Partyoffive Member Posts: 53
    edited February 2016

    I have a question for those of you with bone mets-does anyone have a met in their tibia? I've been stable for 21/2 years and my last scan showed activity in my tibia-I had a recent fall off a horse and my other tumors are inactive so my onc wants to rule out a stress fracture as he said tibia mets were very rare.

    Kristin

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

    Hi Partyoffive, I have mets in both tibias. I do know that it is unusual. Of course, that does not mean that you have the same problem. I am glad your onc is investigating further since it could very well be a stress fracture. It is often difficult to tell on certain scans. I hope you have your answer soon, and I also hope that it is just a stress fracture. Let us know what you find out.

    LovingIsLiving, I am glad that your brother was able to have his infusion today and that his fever broke. I can imagine how much emotion you felt when you received the picture from him. Thank you for sending us the update. I look forward to more updates in the future.

    Hi Maria, Welcome to our little group. I hope your mom is doing well with her treatment. Your English is fantastic so I have no problem reading your posts. I hope you continue to read this thread. I look forward to seeing you post again whether it is giving advice or asking for support.

    Patty, I am sorry that you haven't been feeling good. You have had a rough time and deserve a long stretch of felling good and full of energy. I hope that happens very soon.

    Hello to everyone else. You are all in my heart and prayers. Have a good night.

    Lynne


  • txmom
    txmom Member Posts: 221
    edited February 2016

    Loving is living, I read the "Tell us your stage iv story" thread and there was a man who post that he has MBC.  Maybe your brother would like to communicate with him.

  • Bosco19
    Bosco19 Member Posts: 177
    edited February 2016

    now lost another post - MODS?

    Shortest update - in hospital until next Tues. Changed treatment to completely new and completed first cycle. Platelets still problem ( now 10). Feeling shattered. Taken first formal leave of absence until mid March. More to follow

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

    Bosco,

    Thank you for posting the update, but I am sorry to hear that you will be in the hospital for the next week. At least you have completed the first cycle of your new treatment. I know how difficult it is to spend so much time in the hospital. It is the best place for you to be right now so they can help you gain strength and get through this rough time.

    It stinks that your lost your post. That is so frustrating.When you have the time and energy, please let us know more details about what is going on. In the meantime, you will remain in my thoughts and prayers. (((Hugs))).

    Lynne


  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    Bosco-so sorry you're in the hospital for the next week but happy you had completed your first cycle.

    Patty-sorry you're feeling so down. Maybe you should call your MO to see if he/she can give you something to help.

    Loving is liv-glad you brother got his treatment

    Babs

  • Pat634
    Pat634 Member Posts: 14
    edited February 2016

    Does anyone know if there are any symptoms to be able to tell if Faslodex is no longer working for you? A CA 27-29 done in Nov of 2015 was 40.8 and The one done early this month was 40.2. I've been on this med for almost two years now along with a monthly shot of Xgeva which they are stopping because my teeth have become so brittle. Any information would be appreciated.

  • Ninja6812
    Ninja6812 Member Posts: 13
    edited February 2016
    Hi all,
    Met with my new onco today and I'm liking him more and more. We went through the results of CT scan and in addition to the bone mets, I have tumors in my lymph nodes ( no surprises ), tumor on my left ovary, and fluid on both sides of the sac that protects the lungs. I'm having the left side drained on Thursday when I meet with the RO or next week when I start radiation. Tumor markers are 137 & 140, but he said he would expect that and only uses these markers to determine if treatment is working About the ovary, he said its rare but tumor could be ovarian cancer. He's seen it and is checking with the tumor board to see if possible to get biopsy. Doesn't think it is and if not it will respond to the chemo I'll be on after rads, chemo xoleda, and zometa. Sorry may be spelling wrong.
    It's good to have the testing mostly out of way and have a plan. Plans can change, but feeling like there is work to do and getting myself mentally prepared.
    Thanks again for welcoming me into your group :)
  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited February 2016

    Thanks for the well wishes all.

    Just so exhausted. Can't eat. Nothing sounds good and chewiung takes too much effort. Keeping fluids down. This too will pass, I pray


  • Purplegurll
    Purplegurll Member Posts: 89
    edited February 2016

    Have not gone back to read last few pages, but Bosco, I hope you are holding up as well as possible in the hospital. Pat, I do not know anything about faslodex and I hope you can get info from others to address your concerns. Patty, I am so sorry you are not feeling well. Can you get a call in to your doctor? If nothing else, perhaps they will bring you in for some fluids. Ninja, welcome and sorry you have had to join us here. I found that having an an action plan was a relief. Your treatment sounds much the same as mine and I'm about a month and a half ahead of you: xeloda, zometa, maybe rads. Wishing a good day to everyone.

  • Bail
    Bail Member Posts: 10
    edited February 2016

    hello Lynne, I was wondering what you take for the bone mets, what kind of meds are you taking? I currently just got diagnosed with liver mets and a few spots on my bones. I feel a little pain in my legs right now. Thanks hope to hear from you soon.

    Bail

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

    Hi Bail, I had bones mets with my first dx of breast cancer, so I had never had any treatments prior to stage IV. That meant that I had never had hormone therapy, so that wa available to me. I am on Arimidex and I also have monthly infusions of Zometa. The Zometa is supposed to strengthen my bones and some studies indicate that it can help heal or delay the progression of bones mets. Many people on this thread are treated with Xgeva rather than Zometa. It is given by injection rather than infusion and is more convenient since it is faster. Although I don't experience side effects from Zometa, many others do. I always make sure I am well hydrated the day before and of infusions. I also take a Tylenol and make sure that the infusion is set for a minimum of 30 minutes.

    I do try to walk every day because my onc and breast surgeon have both stressed the importance of exercise. I hope this helps.

    Lynne

  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    Bail

    I have both bone and liver mets. I'm currently on Xeloda and xgeva. My last blood tests showed a drop in my TMs I'm having scans this coming Monday so I'll know if they're really working then. I tried a clinical trial before this which didn't work at all.

    I have some pain in my back and knees but those were always my Problem areas due to age I think

    What is your dr recommending for treatment?

    Babs

  • Rachel1
    Rachel1 Member Posts: 80
    edited February 2016

    Hi Ladies,

    Bone mets first presented in hips with a weird sensation. Sort of pain, but almost sweet like if you ate something sweet and it hit a nerve on a tooth. I had radiation to that area in August. My hip still has that same sensation. Can mets reoccur in the same area so quickly. My lab work (alk phos. which was so high) has been coming down. I don't know if I'm just neurotic or what. Please help.

    Rachel

  • dlb823
    dlb823 Member Posts: 2,701
    edited February 2016

    Ugh! Just checked my lab results on-line -- had labs, Faslodex & Xgeva this a.m. -- and my counts are so low. No wonder I feel wiped out most of the time. My granulocytes are only @ .7 and RBCs aren't doing much better. CA27-29 results hopefully tomorrow. Scans at UCLA on Friday. In the meantime, does anyone know off the top of their head what the danger point is for low RBC's? Just curious b'cuz mine seem to keep sinking.

    Welcome, Pat. I would think if Faslodex was no longer working, you would have noticeably increased pain and higher TMs. At 40, your TMs are very low -- almost within normal range -- and If you've had a less than 1 pt. change, I'd say that's considered stable. Actually I've never seen the CA27-29 expressed to a tenth of a point. And I've never heard of the brittle teeth SE from Xgeva. So sorry you're dealing with that.

    Patty, so sorry you're feeling exhausted and unable to eat again. Hmmm... Do you think it's a bug, or maybe the viral (?) issue you've had in the past? I'm sure I've said it before, but your symptoms don't sound like typical mets-related ones, but much more like a mystery bug that isn't quite getting knocked out so keeps resurfacing. Just my unprofessional two cents worth from afar because I'm concerned about you!

    Loving, I was relieved to hear that your brother was able to get his chemo infusion. Keep us posted! Has he checked out the section here for male bc? I know someone mentioned a specific post above, but there's actually an entire forum for male bc. Perhaps you've already been in?

    Hi, Maria! I'm sorry about your Mom's diagnosis and treatment SEs, but thanks for sharing her experience. And I agree that your English is excellent, and I also understood the intent of your post.

    Hello and big hugs to everyone else here, old & new, and an extra hug to Milaandra/Kathleen (nice to know your name!), Lynne (as hubby continues to improve and praying his spirits stay strong), and Patty -- and I hope I'm not forgetting anyone. Deanna


  • LindaE54
    LindaE54 Member Posts: 1,379
    edited February 2016

    Rachel, I can only speak from my personal experience. I had mets radiated which helped with the pain for a while and then came back. Imaging shows that the mets are stable and even better for one. At some point, the pain was bad enough to have another tx of rads. But as you know, recurring or new pain that lasts more than 2-3 weeks should be checked with MO.

    Welcome to the newbies on the thread.

    Patty - sorry to hear you're not feeling well.

    Ninja - glad you got a tx plan in place. Good luck with draining and rads.

    Bosco - thank you for the update. Curious to know what is your new tx. Keeping you in my thoughts. I hope the hospital food is good...

    I had my Xgeva shot today and feel as if a truck ran over me. Weird that SEs differ every month for me.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited February 2016

    I just learned today that my BC, first diagnosed in December 2015) has spread to my bones (at least 2 sites that we can see on PETSCAN and confirmed by MRI). I'll be having a bone scan soon to get a baseline and for comparison. I'm being treated at UCLA and am interested in talking offline with others who are being treated there (if you are open to talking, I welcome a private message). I'm in chemo now (just finished 3 of 6 rounds of TC) and am handing the SE very well. My onc said next up would be surgery to remove my breasts and hormone suppression therapy. He wants to hold radiation on my bone mets until I experience pain (the mets are in my left hip and elbow) although I will do rads for my breast sooner. I'm open to hearing thoughts on this plan if you have any to share. I have a lot to learn about the medications. He gave me good hope since my cancer is hormonal responsive but I'm having a hard time reconciling terminal illness with long term survival. Any tips for what to do to help gain a strong mindset for this and things I can do within my control are also welcomed. Many thanks, Jennifer

  • dlb823
    dlb823 Member Posts: 2,701
    edited February 2016

    Jen, I'm so sorry to hear that you've just been re-dx'd w/bone mets, but glad to hear what so far sounds like no real change in your aggressive tx plan, including following thru with surgery. I see Sara Hurvitz in the UCLA Santa Monica office, and just adore her. (Sounds like you're seeing someone else, since you said "he.") I actually live out near Palm Desert, so I also use a local onc for monthly labs, shots, and follow up. Anyway, I'll PM you. I'm really curious to find out how this new finding (the bone mets) came about when it did. (((Hugs))), Deanna

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

    Hi all! I'm alive and well and doing the usual work/travel/kitten rescue/going nuts thing. Sorry to have been so out of touch.

    The quake was on the South Island, we're on the North Island. We've had a few smaller ones near us, but no damage or problems except a new small crack in the drywall in the house.

    I am about 5 pages behind; hope to get caught up this weekend. Here's part of why I've been AWOL - we won a Valentine's Day package! It was great fun...the food was wonderful, flowers beautiful, and photo shoot with Simon Woolf (amazing photographer) was great fun.

    http://www.woolf.co.nz/blog11/2016/2/16/woolfloves...

    Sending hugs to all..and welcome to the newbies. Sorry you're here but happy that you found us.

    Take care,

    Terre

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

    Terre, How exciting to win that contest and receive that wonderful, romantic prize. The pictures are great. Youboth look so happy. Congratulations. Thank you for checking in and sharing with us.

    Lynne

  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    Terre how wonderful! You and Mike look so happy! What a great way to celebrate Valentine's Day

    Babs

  • annieoakley
    annieoakley Member Posts: 653
    edited February 2016

    Jennifer, so sorry to hear you've found out you have bone mets. I'm glad though that you're tolerating chemo well and it sounds like you have an aggressive treatment plan in place. My prayers are for you to get to no evidence of disease and to stay that way for many years. It can happen! All the best to you!

    Aurora, thinking of you and praying for excellent scan results.

    Bosco, so sorry you're back in the hospital. Sending you big hugs.

    Patty, how are you feeling today?

    Wendy, when will you get results? I thought maybe today? I know the anxiety of waiting must be driving you crazy, I just went through that. Prayers for everything to be really good.

    Terre, glad the earthquake didn't affect you guys. What a beautiful Valentines story and photo shoot. You both look amazing and how nice to have been able to receive such a great gift. 

    Hugs to all, Annie

  • Bluefrog76
    Bluefrog76 Member Posts: 250
    edited February 2016

    Terre: I think this is the first picture I've seen of you and I'm so moved. Your posts are always so inspiring, because you maintain such a normal upbeat life. But now the picture matches the posts: you exude warmth, love, and happiness.

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