Phone call from onco

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camul
camul Member Posts: 2,537
in Breast Cancer #1

Sunday at 7p my new onco called checking to see how I was doing on Aromasin.  Told him I only started it Saturday Night.  Then he said my tumor markers went down.  I have seen him 4 times since Dec. and he does markers.  It went from 420, 390, 289, and the last one which was 5 weeks after stopping the Femara, 119.  He was excited, thinks Femara helped in spite of acute muscle/joint pain.

I was with origional onco for over 12 years, went to this one for a 2nd opinion when hospice was my only option.  I was told there was nothing more they could do for me.  I didn't even know what tumor markers were until I came to CSN, and asked my onco then about them and he told me he didnt use them as they are not as accurate as scans or listening to the patients.  Too many false results.

Needless to say, I am skeptical and don't know what to think. Since being dx with mets, the only positive result ended up being a false negative on a pet scan, when the dr was excited with the results, I told him nope, pain increased too much to be in remission, so a follow up MRI showed cancer had spread across whole spine, scalp, clavical, humorus bones, both femurs and wrapped around my right knee.   

Since then, the only other pos result was lesions on liver cleared up while on Halaven, yet bone tumors have never been stable.

Hopefully, UHC (which is my secondary ins) will approve the Huntsman Cancer Institute as an 'in network' provider so I can contiue to see this doctor.  UHC rep on phone said they will probably deny it as there are plenty of onco's in UHC network.   Now I have to appeal for all the bills from Dec on.  I swear, working with insurance has been more stressful than the cancer.

I am very thankful now tho that my muscles and joints are finally feeling better.

Does anyone here know what the tumor markers should read?

 

Comments

  • joannstar
    joannstar Member Posts: 403 Member
    #2
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    My onc wants

    the tumor markers to be 31 or less.

    Gentle hugs,

    JoAnn

  • 1surfermom
    1surfermom Member Posts: 396 Member
    #3
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    joannstar said:

    My onc wants

    the tumor markers to be 31 or less.

    Gentle hugs,

    JoAnn

    Symptoms

    My Onco is very much like your first Onc. She does do markers but really is concerned if there is a significant pattern of  an increase. She believes that symptoms are a much better indicator . I am so glad to hear that your muscle and joint pain has become less. Love Surf

  • SIROD
    SIROD Member Posts: 2,194 Member
    #4
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    Tumor Markers

    My tumor markers are always the same.  After doing them once when I had a new oncologist, "she replied to bad, they don't work on you, they are good indicators when they work".  I changed oncologist as I didn't want to drive one hour away this winter.  Even though I told this new oncologist that tumor markers don't work for me, he asked for them.  He did say on me they didn't work.

    I would think the fact that yours are going down might be an indicator that they are working.

    I am glad that your pain is less after going off Femara.

    Best to you,

    Doris

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #5
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    SIROD said:

    Tumor Markers

    My tumor markers are always the same.  After doing them once when I had a new oncologist, "she replied to bad, they don't work on you, they are good indicators when they work".  I changed oncologist as I didn't want to drive one hour away this winter.  Even though I told this new oncologist that tumor markers don't work for me, he asked for them.  He did say on me they didn't work.

    I would think the fact that yours are going down might be an indicator that they are working.

    I am glad that your pain is less after going off Femara.

    Best to you,

    Doris

    Well, I like that they're going down!

    They are changing, Carol, and in the right direction.  That has to mean something.    I hope you can tolerate Aromosin because it seems like Femara inspite of causing its own set of issues, did some good on the tumors. 

    I don't have tumor markers done and don't know anything about them so I really can't comment except to say that yours are trending DOWN and isn't it great to have a positive call from an oncologist?.

    Suzanne

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #6
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    I think it is wonderful news

    I think it is wonderful news that they are going down!  Mine were elevated (for the first time in my life when I had bone mets).  They went down (but not back to normal) as the bone mets went into remssion.  Then they started to creep back up with the liver mets.  After chemo, they are normal again for the first time in 5 years.  Aromasin (and arimidex and femara) causes joint pain and fatigue, but I never stopped taking it because I understood the importance of it.  I did learn to manage it and/or live with some of it.  It really helped me and my onc said that I may go back on hormone therapy at some point if the herceptin/perjeta fail.

    Anyway, a downward trend is never, ever a bad thing!!!!!  Now I am putting the gris gris on your insurance company today, so hopefully they will quit being *&%#* jerks!!!!

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #7
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    CypressCynthia said:

    I think it is wonderful news

    I think it is wonderful news that they are going down!  Mine were elevated (for the first time in my life when I had bone mets).  They went down (but not back to normal) as the bone mets went into remssion.  Then they started to creep back up with the liver mets.  After chemo, they are normal again for the first time in 5 years.  Aromasin (and arimidex and femara) causes joint pain and fatigue, but I never stopped taking it because I understood the importance of it.  I did learn to manage it and/or live with some of it.  It really helped me and my onc said that I may go back on hormone therapy at some point if the herceptin/perjeta fail.

    Anyway, a downward trend is never, ever a bad thing!!!!!  Now I am putting the gris gris on your insurance company today, so hopefully they will quit being *&%#* jerks!!!!

    darn insurance company .. all this bull crappppp o la

    Carol,  do you have anyone helping your this insurance process ??  social worker, or health advocate of sorts from 1 of your Oncologist office/center? I am sorry to hear about all this confusion - and frustration. ..  Dealing with insurance providers is surely a full time job.

    Delighted by the news that your markers have gone down - altho there appears to strange side efforts for you, dear Carol. Hate Hate that you are dealing with this craziness.

    Gentle hugs,

    Vicki Sam

  • New Flower
    New Flower Member Posts: 4,294
    #8
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    VickiSam said:

    darn insurance company .. all this bull crappppp o la

    Carol,  do you have anyone helping your this insurance process ??  social worker, or health advocate of sorts from 1 of your Oncologist office/center? I am sorry to hear about all this confusion - and frustration. ..  Dealing with insurance providers is surely a full time job.

    Delighted by the news that your markers have gone down - altho there appears to strange side efforts for you, dear Carol. Hate Hate that you are dealing with this craziness.

    Gentle hugs,

    Vicki Sam

    Encouraging news

    Carol 

    goo to hear about your very encouraging news markes going down

    hugs

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #9
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    Hi Camul

    I just wanted you to know that I was thinking about you.  You are in my thoughts and prayers often.

     

    xoxo,

    Jean

     

     

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