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Bone Mets Thread

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Comments

  • nonahope
    nonahope Member Posts: 695
    edited January 2019

    Delvzy...Count me in to be here for support. I can't even imagine what you are going through mentally, let alone physically. You are in my prayers.

    Hope

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Delvzy -- Woo Hoo!!!

    Today you knock out one of those WBR sessions!!! Hallelujah!!!

    Praying for your strength and ability to focus on something wonderful before, during, and after. Every moment of life is a GIFT. You can get through this. Even if only 1 minute at a time.

    God, please be with our Delvzy today as she takes on WBR. May she know your Hand is all over this challenge and may she find the peace that passes all understanding as promised in the Bible. Amen.

    Gumdoctor

  • sherry35
    sherry35 Member Posts: 155
    edited January 2019

    Best of luck today Delvzy! Thinking of you and sending healing and positive vibes your way! Know we are in your pocket

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Hello All,

    After meeting with new MO, my first decision to make appeared. She told me I should have been on Zometa or Xgeva ever since DEC '17 stage 4 dx. Previous MO never mentioned it. When I brought it up at least 3 times, he said, "I have NO concerns about your bone health." I sigh now, as I look at the huge walking boot on my right foot for stress fracture that has been symptomatic for over 3 mos. Just got the boot last week. New MO thinks it is related while previous MO did not.

    Army insurance (Tricare) covers neither Zometa or Xgeva. I will have to fight them to get it covered!

    What thoughts are there on Zometa vs Xgeva?

    I have alot of research to do to get comfortable with this new addition to my treatment plan.

    Gumdoctor

  • leigh68
    leigh68 Member Posts: 39
    edited January 2019

    Gumdoctor,

    I have Tricare Prime as I'm sure you do and my Xgeva is covered.

    Leigh

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Thank you for the reply. Yes I have Tricare Prime. Nurse case manager is the one who told me they are not covered. She is working on the work-around.

    They were not going to cover my two MRIs either. She had to fight to get them approved. We are good to go now for Monday and Wednesday MRIs.

    Gumdoctor

  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited January 2019

    Gumdoctor, I’m also on Tricare Prime and everything I’ve done so far has been covered. I have a port, have monthly Zometa infusions and had Ibrance/letrozole and now abraxane. Also getting a second opinion covered by Tricare. My husband is retired and the rules may vary for active duty. I don’t know if they give you an option besides a MTF. I am constantly checking my online account for authorizations when I’m waiting for one. After the disaster last year when they switched providers I don’t wait long before following up if nothing is happening.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Wanderingneedle,

    It will be great if nurse case manager is wrong. And if not wrong, she figures out the work-around to fix it. God is in charge. There have been only a few things they would not cover. But it is always a challenge to get things approved. I had to reschedule some scans by several weeks and was 2 wks late starting Ibrance because of their approval delays. Adds another layer of stress we do not want or need.

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    I just got out of the hospital Monday. I was admitted December 26. Turns out I had viral meningitis. Right side of my chin/jaw is numb but hurts. Being sent to neuro for the tumor between my ear and brain. I feel guilty for complaining because of my little symptoms when there’s obviously so many who have way worse things going on than me. Love and prayers to you all

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    CONGRATULATIONS TNMTNGAL!!!

    At least being out of the hospital is greater than being stuck in there. Praying for some positive, actionable findings.

    Gumdoctor

  • Jaylea
    Jaylea Member Posts: 440
    edited January 2019

    Gumdoctor, bowed my head and took your hand as I read your lovely prayer for our dear Delvzy. Delvzy, I hope you are resting cozy and comfortably while WBR works its magic.

    Now, Gumdoctor, I am so pleased you like your new MO. It's amazing the difference a genuine connection makes. It sounds like you'll be on Xgeva, but I'm on monthly Zometa and it's by far the easiest part of my treatment plan. First couple of months were rough, with flu-like symptoms, but nowadays it's just a nice hour of podcasting and on with my day. Further, my MO considers it a crucial part of treatment. Not only does it strengthen bones, it aids in pain and may even disrupt the cancer. I'm sure Xgeva does the same. Good luck to you.

    TNM, listen to you, worried about everyone else when you've just spent days in the hospital. Glad you're back home. But not loving the tumor part. Continue to heal and keep us posted on what's next.

  • bigpeaches
    bigpeaches Member Posts: 238
    edited January 2019

    TNMTNGAL, glad you're out of the hospital, I know how it feels to be stuck in there!


    Tricare should cover everything, no questions asked. I mean it's not like you (or your mate) didn't serve in the military or anything. Sheesh!

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    Thank you to each of you. I go to see my neuro today at 2:30 to get a plan on the tumor. He’s the one who put a cage in my neck and fused a couple vertebrae together. I love him. He’s a great dr and a good Christian man. He prayed with me before we went into the O.R.

    Delvzy...still praying for you, as well as the rest of us. Hugs and love to each of you as you go through your day.

  • nonahope
    nonahope Member Posts: 695
    edited January 2019

    TNMTGAL....So happy you are out of the hospital and on the mend. No one on these boards are whiners. I can't even fathom what some of you gals have been through and are going through. I've been very blessed never to have been hospitalized like some of you. Stay strong. Keep us posted on the neuro appointment. Praying all goes well.

    Gumdoctor....My onco initially started me out on Zometa. It did a number on my kidneys. My creatinine levels dropped really low. I was getting daily infusions to hydrate. It was horrible. I have since been on Xgeva and have had no problems whatsoever. Like we say, everyone reacts differently to meds. I get my Xgeva injection every 4 weeks.

    Thoughts and prayers to all having tests.

    Hope

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    Nona...I had the neuro follow up today. He’s watching the brain tumor for 8 weeks then repeating the mri. If it’s stable, we won’t do anything but watch it. If it has grown, they’ taking it out. I guess I’ll know more in 8-10 weeks. He did say it looks to be a benign Swanoma. So that’s good. But if it’s growing it will have to come out. I can’t take these headaches and dizziness and sick at my stomach all the time. I feel like I’m car sick all the time. And any eye movement or any movement at all makes it worse. Ughhhh! (The tumor is between my inner ear and brain, compressing on my brain.

  • illimae
    illimae Member Posts: 5,739
    edited January 2019

    I’m sorry for the terrible location but “looks benign” sounds promising.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    TNMTNGAL,

    I agree that benign sounds better than what we usually hear...

    I just read briefly about schwannoma and another tx could be radiation. Lots for you to access online if you choose to read up on it.

    Gumdoctor

  • Delvzy
    Delvzy Member Posts: 454
    edited January 2019

    Thanks girls i had my first treatment yesterday and it was ok. God hears x


  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    Illimae & Gumdoctor...yes, sounds a lot better! Thank you Gumdoctor. I will look it up.

    Delvzy...hang in there! I’m putting you on our prayer list at church.

  • nonahope
    nonahope Member Posts: 695
    edited January 2019

    TNMTGAL....I hope they can give you something to take care of the dizziness etc. I'm sure the location of the tumor has something to do with the dizziness/nausea. Antivert is a great medication for vertigo. The plan sounds great, but I couldn't put up with the nausea etc.

    Delvzy...Hope all treatments are easy for you. Hugs/prayers!

    Hope

  • KPW3
    KPW3 Member Posts: 127
    edited January 2019

    I don't post in this topic due to not having active bone mets.....but I have to say I have been encouraged by the responses and notes I read here. This page is very encouraging of each other, very uplifing.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Oh Delvzy,

    Thank you for letting us know you made it through. When is the next session?

    Prayers and much love to you,

    Gumdoctor


  • Lita57
    Lita57 Member Posts: 2,338
    edited January 2019

    TNMT....

    I had HORRIBLE dizzyness...almost to the point of falling over and passing out. Had WBR, but I still get dizzy once in a while and have to sit down and wait for it to pass.

    What has helped me is the non-psychoactive component of Med MJ - the CBD tincture. My palliative care Dr has approved it as long as it keeps working. It keeps the seizures at bay, too.

    L


  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    L...I’m sorry you have to put up with it too. Thank you for the information on the CBD oil! I will try it. My daughter sells a high grade CBD oil. I’ll get her to get me some. Love and prayers to you all!!!

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    KPW3,

    So glad to hear you are not dealing with bone mets right now...I read through some of your posts on other threads and you are already dealing with plenty!!!

    This is an amazingly supportive group here in the Bone Mets Thread...after my dx, I had already dug my grave and was sitting in it to die (figuratively). Then I found this group. I found strength and courage I never imagined could exist in the middle of this hideous disease. I found role models to show me what living and even thriving looks like in this impossible/surreal situation.

    From my perspective, you can stop by and visit us any time. Our group seems to have alot of caring and love to share...


    Gumdoctor

  • sherry35
    sherry35 Member Posts: 155
    edited January 2019

    TN- so glad you are now home! What an ordeal you've been through!

    Delvzy- glad the first treatment went well!

    Ladies, many people have suggested CBD oil to help with my gastro issues and sleeping. I'm so afraid to try it. Can any of you that use it direct me to some reliable information on it?

    I've now finished my second cycle of meds and am envisioning it kicking the cancer cells asses throughout my body. I've got this!


  • Delvzy
    Delvzy Member Posts: 454
    edited January 2019

    Dont be afraid of CBD oil . I started on it / year ago before moving on to blended CBD and THC oil

  • Fromturkey
    Fromturkey Member Posts: 1
    edited January 2019

    I have bone mets only stage four breast cancer. Now i am in NED for three months. I hope i will save ned.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Fromturkey,

    So sorry to hear you are joining us but we welcome you. You will find amazing support and role models on how to live and even thrive in spite of MBC.

    Welcome,

    Gumdoctor

  • KPW3
    KPW3 Member Posts: 127
    edited January 2019

    Thanks Gumdoctor

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