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Bone Mets Thread

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Comments

  • Delvzy
    Delvzy Member Posts: 454
    edited December 2018

    Nonahope thank you for praying for me x

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited December 2018

    Thank you so much for the prayers! They did the lumbar puncture yesterday I think. I’m still in the hospital and have been running a high fever. Test negative for flu, meningitis, and a bunch of other diseases. They said they won’t have all the results from the puncture for about 2 weeks. They’ve tested me for kidney infection...negative. They did say both my implants have ruptured. Has anyone ever heard of ruptured implants causing any symptoms like these?

  • illimae
    illimae Member Posts: 5,739
    edited December 2018

    TN, I’m so sorry, this whole ER(s) trip sounds awful. Sending good vibes for improvements and good test results.

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited December 2018

    Thank you Illimae! Yes...it has been one heck of a week! My fever got up to 102.7 today. It made me feel horrible. I think they have it stabilized now. I just went down for chest X-rays and a ct so hopefully I’ll know something on those tomorrow. Fingers crossed! I hope you all are well!

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited December 2018

    Delvzy...praying for you friend!

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited December 2018

    They’ve been asking a lot of questions about how long I e been on chemo. I hope they’re just curious and haven’t seen anything on any tests. When I had the lumbar puncture, the dr who did it told his assistant to be sure and order extra tests. Would that mean he saw something

  • illimae
    illimae Member Posts: 5,739
    edited December 2018

    TN, I suspect the extra tests would are related to your numerous symptoms, some of which are odd, if I recall correctly. The lumbar puncture is like labs, I don’t think they “see” anything, like you could with scans or an ultrasound. I wish they’d get you the results faster though, two weeks is a long wait.

  • nancyartcrafts
    nancyartcrafts Member Posts: 24
    edited December 2018

    Diane ( lung issues), Delvzy and TNMT, I am praying for you. Comfort and lessening of pain with quick resolutions for you all. Amen and amen

  • iwrite
    iwrite Member Posts: 746
    edited December 2018

    TN, Delvzy, and Nancy- sending cyber hugs as this past week has been so hard on you all! The worst holidays ever for some wonderful ladies.

    We all need to be ninja patients in 2019. Let’s get those medical folks responding in a timely manner! There’s no excuse for a two week delay in results IMHO.

    I think we also need to push for regular health care. I asked for a cholesterol test last month (after reading about statins being a potential treatment for MBC)and they half heartedly agreed. The results were terrible, but no call back as yet. I used to worry that MBC would be the end. Now I think it will be a cold or UTI no one takes seriously.

    We're here and our lives matter. Thank you for the strength, support and humor you all contribute. We’ve helped each other get off and stay off the ledge in 2018!

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    Thank you to each of you! I am still in the hospital. They keep ordering more and more tests...which is perfectly fine with me, as long as we find out exactly what is wrong and we can fix it! What a way to bring in the new year! They mentioned tests for MS. They also did another (I call them a brain swab!) flu test swab to test for anything viral. They’re also testing for TB and meningitis. I ran a high fever again today. They started a high regiment of antibiotics yesterday. Now, in addition to my chin and jaw being numb, I have muscle cramps and spasms down the back of my right leg.

    My back is still killing me. No relief.

    I agree! 2 weeks is way too long to wait on test results. If it will get me a definite diagnosis and a fix, I’m willing to wait. I’ll just keep busy with my grandson.

    I wish to each of you, faith, prosperity, love, comfort and peace in 2019!

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    Happy New Year everyone!!!!!!

    One test came back positive for viral meningitis.

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

    TN, well, there’s an answer that isn’t cancer, hopefully it’s very treatable. Wishing you well 🙂

  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited January 2019

    WOW! So glad you insisted on that lumbar puncture and you’ve been staying in the hospital through all of this. Glad itnot the cancer and something treatable!

  • nonahope
    nonahope Member Posts: 695
    edited January 2019

    Wishing all a happy, healthy New Year!

    TNMTNGAL....I'm glad they found something that may be causing all your pain. I'm praying it is easily treatable. Glad you are in the hospital while all this is going on. Hang in there! Keep us posted.

    Hope

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Answer to multiple prayers.

    Bless you.

    Gumdoctor

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    While not as important as supporting our lovely friends in distress...

    I MUST SHARE THIS NEWS...

    I have mentioned my very apathetic oncologist in several posts...and my frustration over not being taken seriously...I received a call last week that he is on indefinite leave and i will be seen by a substitute MO next appt.

    I found a news report online today...wait for it...he has been arrested for attempting to strangle his wife and threatened to shove a butcher's knife down her throat!!!!!!!!!!!!!!!!!!!!!!

    He was released on bail. But this explains alot about his mind being elsewhere and not taking me (or others) seriously.

    I will need to pray for him too. But I think he will be out...for a long time...very possibly I will not see him again...

    Gumdoctor

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited January 2019

    Gum doctor, Holy mackerel! That certain isn't news anyone would expect to read about their MO! I hope his wife is okay and finds someway to recover from what must be a horrifcally emotional experience as well as the obvious physical effects. Hopefully, you will find a better MO now.

    TNMTNGAL, I am glad that they found the source of your symptoms. Do they think that viral meningitis is causing all the issues? I hope you respond quickly to treatment.

    Hugs and prayers from, Lynne


  • Jaylea
    Jaylea Member Posts: 440
    edited January 2019

    Gumdoctor, what the damn hell?? You're well rid of him, but agree he needs prayers, as he is clearly not well. Hope your new MO is, um, stable.

    LovefromPhilly, looking forward to hearing about your Jamaica trip, mon.

    Delvzy, hoping every day to hear that your jaw pain is under control.

    jhj0112, hope your wife's limping has resolved. I've had a few bizarre moments of muscles just giving out, but nothing sustained.

    Wishing everyone moments of pure joy in 2019.

  • bigpeaches
    bigpeaches Member Posts: 238
    edited January 2019

    Wow Gumdoctor, and here I was upset that mine's retiring. Yikes!

  • nonahope
    nonahope Member Posts: 695
    edited January 2019

    Gumdoctor....Holy Cow!! They could make a Lifetime movie out of your MO's behavior. That surely explains his aloofness to you!

    Hope

  • leigh68
    leigh68 Member Posts: 39
    edited January 2019

    Since being diagnosed in August with de novo bone mets; I've had two CT scans, two negative bone scans and most recently a negative PET.The original CT indicated extensive salt and pepper sized bone mets – all sclerotic.The second CT (3 months later) showed "Osseous metastatic disease with numerous new and enlarging sclerotic foci throughout the axial skeleton" which MO stated "Increased sclerosis means that the XGEVA and endocrine therapy are working to heal the bone".

    Although I am pleased with the negative PET, it opens up many questions the NP couldn't answer. Is the PET negative because the lesions are so small or the cancer is slow growing? If so, how can we be sure the HT is working or do I just wait until I feel pain?

    I think I need an oncologist who specializes in ILC.I'm in Virginia, but I'll travel anywhere.Any suggestions?

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    Hi all...well...ct scan showed “Ill defined hypodensity pancreas. So I had to have the mri today. Probably (praying) have answers/reports tomorrow. This is driving me nuts

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

    TN, you’re being treated for the viral meningitis too, correct? Are you feeling any better at least?

  • Delvzy
    Delvzy Member Posts: 454
    edited January 2019

    Girls Ijust got the results of the MRI tonight and it's very bad . I have cancer through all the lining of my brain with not long to live. I have to have whole brain radiation asap which will make me very sick and lose all my hair. Sorry to have to tell u like this , I now have to tell my family

  • nancyartcrafts
    nancyartcrafts Member Posts: 24
    edited January 2019

    Delvzy, I am holding you up in prayer. You are not alone. I am so sorry to hear this. I am also praying your pain subsides and your tears are wiped away by His loving hand

  • Delvzy
    Delvzy Member Posts: 454
    edited January 2019

    Thank you I am a Christian so I have faith to hold on to but it's dooo hard . My 16 year old son is deva

  • bigpeaches
    bigpeaches Member Posts: 238
    edited January 2019

    I have no words Delvzy except I'm sorry and I'm praying for you and all of us. :(

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited January 2019

    Delvzy, I am so sorry about the news you received. If you haven’t already done so, post any questions you have to the Brain Mets Sisters thread. There is a very helpful group of people there. Some of them have had whole brain radiation and can give you better information about experiences, expectations and effects of the treatment. Lita, who often posts here, has had WBR, and I am sure she will be along to give you some information or advice. I will keep you in my prayers.

    Hugs and prayers from, Lynne


  • 50sgirl
    50sgirl Member Posts: 2,071
    edited January 2019

    Here is the link to the Brain Mets Sisters Thread

    https://community.breastcancer.org/forum/8/topics/777599?page=1

  • TNMTNGAL
    TNMTNGAL Member Posts: 105
    edited January 2019

    Delvzy...I am so so sorry to hear this news. You will definitely be in my prayers, as well as the prayers of my church.

    Illimae....yes, on treatment for men

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