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Bone Mets Thread

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Comments

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

    I'm feeling seriously bummed out today. I think something is going on with the tumors in my liver because it has been hurting all day. It really scares me. I'm not ready for this. You know what I mean?

  • annieoakley
    annieoakley Member Posts: 653
    edited September 2015

    Oh dune, I am praying for your pain to go away right along with the fears you are having. Sending you big hugs and whole lot of love. 

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

    So sorry you're hurting and scared, Charlene. It's natural for our minds to go to the worst case scenario, but could the pain be from something else -- like something you ate or constipation or ????? When do you see your onc again? Praying things settle down quickly!

    And welcome, GDFrasier! Glad you've found us, and I'm thrilled to hear about the great response to your tx and dramatic drop in your TMs!

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

    Dune, I'm adding my prayers as well. Love and hugs coming your way. But don't let your mind wander off too much. You know what I mean? Can you believe I don't even own a camera? you and Lindalou are motivating me.

    Frasier, A warm welcome to you but sorry for the reasons that bring you here.

    I also got a good chuckle with those bull stories! And no offense taken Rose here from Quebec.

    Hope you all had a good Saturday. Hope Sunday brings joy and a smile on our face.

  • GDFrasier
    GDFrasier Member Posts: 4
    edited September 2015

    I hadn't heard that lobular was more likely to recur when I was treated back in 2002, but I don't suppose it would have done any good to worry about it.

    Thanks for the welcome everyone, and big hugs to all. :-) Gail

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

    Welcome to the group, Gail.

    Dune - you're always in my thoughts and prayers. Hoping the pain resolves itself quickly and that it's nothing to worry about.


  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2015

    Welcome Gail! I'm a lobular girl too, mets 7 years after first diagnosis

  • Myra1211
    Myra1211 Member Posts: 532
    edited September 2015

    Try to keep good thoughts Dune. We are pulling for you. Myra

  • chelleg
    chelleg Member Posts: 396
    edited September 2015

    Dune, I'm sending all positive thoughts to you!!! No more mets!!!! I'm having my first infusion of zometa at noon tomorrow. Spent the day preparing, stocking up at SAMs club, running errands and cleaning my room. I'll try to post tomorrow night. Love, hugs and positive thoughts for all of you wonderful ladies across the globe! chell

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

    Thanks y'all. It's so good to have a place to go to share, especially scary stuff. I am very grateful for the support. I hope it turns out to be a rib. It just felt so different than the bone pain. Now, both sides hurt and that actually makes me feel better. It is doubtful due to constipation. I've been experiencing LOTS of movement in that area. LOL So, here we go into the week, with work and docs and treatments. My big day is Tuesday this week, so I have another day free. Best wishes for everyone's week. I'm going to go see if I can catch that eclipse.

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

    Chelle, does Zometa knock you out? It's very smart of you to get all prepared. I should give some thought to that. Nah. Not my nature.

  • AmyQ
    AmyQ Member Posts: 821
    edited September 2015

    Dune, I'm sorry you are in pain and scared. I would be too. Sending you prayers for healing and much a improved liver.

    Amy

  • chelleg
    chelleg Member Posts: 396
    edited September 2015

    Dune, yea, I could run a high fever, excessive bone pain as well as unpleasant flu symptoms. I may have no se. But am prepared for the worst. I have never been one to even turn on the t.v. But I did put one in my room, as well as got a Netflix account. So I will be entertained, at any rate. I would really like to see some of your photography. It is a hobby I never picked up, but have always been interested in. About 18 years ago I actually invested in a Nikon fm10. I bought a separate zoom lens and it has sat in its case. Total waste of money. I would be glad to send it to you if your interested in 35 mill

  • Wendy3
    Wendy3 Member Posts: 872
    edited September 2015

    Dune I will be thinking of you and sending good vibes out your way. I hate how our minds play these games on us. I'm hoping it is something else entirely maybe something you ate or gas. I had my huge panic a couple weeks back not dying it's just hemmoriods.

    Get some good rest all

  • auroaya
    auroaya Member Posts: 784
    edited September 2015

    Hello everyone and sorry I seemed to have disappeared, somehow this thread was taken away from my favorites since Sept 10 and I just noticed today. I skimmed through the pages but I'm not going to try to address each one of you individually. Just know that my prayers are with those going through difficult times and painful times.

    I got the transfusion done and to be perfectly honest I felt no different. The next time I had lab work my numbers were down again and had to get an injection. this week I have an appointment with my orthopedist oncologist to see if we can go ahead with surgery of my right hip and femur. This is the same femur that I had surgery in 2012 when they discovered the cancer in the bones but the "hardware" is out of place and sticking into my hip bones causing a lot of pain. The orthopedist gave me two options: 1) remove the "hardware" and leave the leg like this without support which would take care of the pain but would mean I can't use my leg. Or 2) replace the hardware and reconstruct the hip but that would require 3 months of rehabilitation. He told me to think about it. I have. I cannot make a decision yet.

    I need to know those 3 months would I be in the hospital, or a rehabilitation clinic or what? I can't be sent home straight from the hospital because I have no one to care for me. My daughter lives with me but has a 3 year old son and goes to law school full time besides cooking and cleaning house. I'll wait until I see the orthopedist and he lays out the plan for rehabilitation.

    Any ideas welcomed.

    Aurora

  • Cuculi
    Cuculi Member Posts: 82
    edited September 2015

    Hello girls!

    I have just read the last 5 pages! I have been so miserable the last week... my body aching, my emotions aching even more... so I just wanted to stay in bed and do nothing.

    I appreciate all your posts because I am learning a lot. Its frustrating to see how BC affects our lives and glad to be part of this forum which helps us a lot. I won't be able to address you individually but I am sorry to hear for the progressions and glad to hear that others are stable. I think all of us have the chance to live quite a while more. I have a 5 year old son, so I plan to be here for a while...

    I have realised, as someone else said, that I don't know exactly where my bone mets are. Bone scan July said left rib and sacro. However a couple of weeks ago I was not able to walk coz couldn't use my right leg. So I had a MRI and then as well a thorax scan and it showed something more in my cervical and sacro. It even said that there was a possible fracture (I was taking bisphosphonates pills) So now I have just started zometa shots (september 8) and rads (september 17). I don't know what is making me feel so bad... I just don't feel well: pain, no appetite , some nausea... sucks. For the pain I even got morphine pills but I think all those pills made me feel worse...

    Has anyone felt like these? I do like my new onc since she is so optimistic and says I will soon be doing well... but sometimes I just don't know... I just don't know how I will manage my life dealing with the bone mets... I am not even 40 and it simply sucks... sorry for the whining...

    As everyone says, I just want to keep doing the regular things: go out for a walk, play with my son, go out for movies, coffee with friends etc... although I would accept to travel to Bora Bora.

    Time to go to bed and hope that everyone is able to have a pain free night.

    Hope to have more energy to read and post this following week,

    Cyber hugs!

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

    Aurora, I think you are wise to wait until you get all the details from your ortho doc. But I also think you will have to figure out a way to get it done, because I can't imagine not being able to use your leg, and I can't imagine that it would be truly pain free without proper support.

    As you may recall, I had a total hip replacement and a titanium rod inserted in my femur in 2014, and while the first two or three weeks (including 4 or 5 days in the hospital) were rough, once home, my recovery went very quickly. Three months is the total recovery time for what I had, but probably 2-1/2 of those months I could have taken care of myself. It's just the first two to three weeks where you will need some help. If this is what you're facing, I can't imagine not doing it and not being able to use your leg.

    Cuculi, so sorry you're having a rough time right now. Are you still on morphine? Some people (including me) can't tolerate morphine. Can you ask for a different pain med? There's a very recent thread here that talks about mixed research articles and conclusions regarding the effects of opioids on metastasis. I didn't read all the articles, but the fact that some research may indicate a link between the two was concerning to me. Here's a link to that thead: https://community.breastcancer.org/forum/73/topic/... Also, was your "possible fracture" in your femur? If so, some of us here have needed surgery to repair that sort of fracture, which will worsen as you put weight on it. So just reading how bad you feel, I'm wondering if your docs have looked closely enough at what's going on with that "possible fracture." Deanna


  • Megc
    Megc Member Posts: 19
    edited September 2015

    ChelleG,

    FYI. Being prepared is a good idea. The first time I had Zometa, I had flu like symptoms during the middle of the night. They didn't come until about 12 hrs after the infusion. I was very unprepared. Both ends going at the same time. For a couple of hours it was the pits because I was alone. By midday of the next day it was over. Got that infusion fortwo and a half years, never happened again. Hadn't found this web site at that time.

    I rarely post but I read a lot and am so greatful for the info everyone contributes.



  • chelleg
    chelleg Member Posts: 396
    edited September 2015

    Megc Thank you for the info, it's just nice to know what I might be in for. I can handle it a little better that way. I really appreciate it!!! Chell

  • Lindalou
    Lindalou Member Posts: 598
    edited September 2015

    Dune- I like your new Avatar and encourage you to go take some photos when you are able. The distraction will help.I have a digital Canon EOS Rebel, but will check out the lighter cameras you mentioned. As far as your pain, has it been more intense the past few days or something new?

    Cucculi- It may be a combination of Zometa and the rads which are causing all your pain. Zometa can cause the symptoms you are having and you may need to give the rads time to do their healing.

    Aurora- See what the orthopedist says about your long range plan for rehab. The operation may not be easy but living in constant pain is not good either. Most facilities offer in home support as well. They won't send you home with any help and a home care plan.

    Gail- so good to hear that your TM's went down.

    Chelle- I want some of your Phoenix Tears.

    Blood Moon was pretty incredible here last night. Anyone else see it?


  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited September 2015
    Thank you all for your kindness and encouraging comments.


    Sue 2009 I had bone radiation prior to the brain radiation and was told my chemo had not worked on the bones yet the radiation has seemed to. Doing much better now and I also had it in both hips, spine and left femur. They told me that depending on the spot/spots they can do the targeted area in a one shot thing now also. Best of luck to you.


    Hoping the same for everyone.
  • Kendrasue
    Kendrasue Member Posts: 107
    edited September 2015

    Rachel, very happy to hear of your good report. I'm smiling for you.

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

    Good morning all, (I got my days mixed up again!)

    Aurora - That's quite a decision you have to make. Like Deanna said, I can't imagine not being able to use the leg. Following my femoral rod insertion, I used a walker to get around for the first couple of weeks or so. I had temporary help at home which helped a lot. But after 3 weeks, I could manage on my own with a cane and the walker. I wish I could be there with you. Can the hospital provide home care for a while? or a rehab center? This is a more invasive surgery - you will need help. Praying you have answers and options soon. Can your nurse navigator help? Wishing you the very best and I am so sorry you have to go through this. Big virtual hugs and good luck with Ortho appt.

    Dune, I hope you're feeling better today. Quite a week you have ahead of you.

    Cathy - I'm so happy to hear you're doing better.

    Cuculi - It's a lot at the same time. I echo what others have said. Morphine can certainly cause nausea - perhaps contacting your Onc's office and letting them know how you feel would be a good idea.

    Good week to all.

  • cjanet
    cjanet Member Posts: 288
    edited September 2015

    Hi guys,

    I just threw up at work. WTF? I'm on Ibrance and Faslodex. Does it cause this? I feel like things are beginning to get out of control for me, in terms of pain and feeling ill. I left my onc's nurse a message. I do have an appt this week. Maybe it is time for scans.

    Everyone have a lovely day.

    Cathy and Amy. So sorry to hear of the progression. I'm hoping you get a new treatment plan in place.

    Welcome GDFrasier. Glad you have a slow growing cancer and have been able to have such a quick response to your meds.

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

    Cristina, so sorry that happened to you, but yes, Ibrance can cause vomiting. It's happened to me once (and just out of the blue) during each of my two cycles. I think eating certain foods may exacerbate it, but definitely an Ibrance SE. So please don't read anymore into it for now. (((Hugs))) and hope you feel better quickly!

  • cjanet
    cjanet Member Posts: 288
    edited September 2015

    Thanks Deanna,

    I think I needed to hear that. I'm scared these days.

    Thanks everyone for the support, I'm really needing it lately.

  • GG27
    GG27 Member Posts: 1,308
    edited September 2015

    I just read about this clinical trial. Looks like I will qualify for it, means some traveling to Vancouver, but this is some real promise as I'm not sure what my MO has in store for me next, though I am getting some more rads.

    Personal Oncogenomic Trial

    I still haven't caught up on this thread, but wanted to post this in case anyone else can join the trial. Hugs to those having a hard time of it. And hi to everyone! It's a very busy week here, not much time to spend here, but know that I'm thinking of all of you. Cheers, Dee

  • txmom
    txmom Member Posts: 221
    edited September 2015

    Dee, great article. Let us know if you get in the study. Best of Luck!

  • Cuculi
    Cuculi Member Posts: 82
    edited September 2015

    Thanks Deanna, lindalou and Linda for your comments. I went to see my radiologist today. She told me to keep taking anti inflammatories, which I have stopped. And gave me something for the nausea. She also said to give time for he rads to work as you have said. Regarding pain, I have something else now

    On Thursday I have an appointment with my onc and will check carefully which are the bone Mets and their "situation".

    Cjanet, I totally understand you. I wish, from the bottom of my heart, that we can all feel better. Quality life is so important that not being able to do our stuff sucks.

    Today I went to my homeopath. He helped me to get through chemo and rads. Hope he can help me this time.

    Cyber hugs to all of you!!! And a pain free evening.


  • Cuculi
    Cuculi Member Posts: 82
    edited September 2015

    thanks Deanna for the link regarding opioids!!!

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