Markers and Monday appointment--Pink Bus please

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CypressCynthia
CypressCynthia Member Posts: 4,014 Member
Although my last scan revealed no activity and I am supposed to be in remission, my markers are still very abnormal. They did not go up >20%, but they did not budge (CEA up 15%; Ca 27.29 about the same). Sigh.... I guess they will never be normal?

What is so hard for me is that my markers were completely (low) normal for 20 years, but, since my mets they have continued to climb. MD Anderson said, as my physician has said, that they follow markers, but do not make decisions solely on those results. PET scans are more important and they are looking good.

Anyway, I see my onc Monday afternoon, so we'll see what he says. I am hoping for no PET scan as he had said that he would do scans if my markers increased by >20%. I will be feeling you guys on Monday--I know you will be there in spirit!
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  • MAJW
    MAJW Member Posts: 2,510 Member
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    Count me aboard !
    Wouldn't miss the bus! Will certainly be sending you best wishes......you can pretend you don't know us if we get over zealous....rumor has it we've been loud before, cheering our sisters on....

    I do have a question...if one has mets what is the criteria for being considered in remission....? I'm confused by that....not surprising, I think I stay confused...lol. Chemo brain...my story and I'm sticking to it!

    Wishing you < 20 % on your tumor markers...

    Big hugs, Nancy
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    MAJW said:

    Count me aboard !
    Wouldn't miss the bus! Will certainly be sending you best wishes......you can pretend you don't know us if we get over zealous....rumor has it we've been loud before, cheering our sisters on....

    I do have a question...if one has mets what is the criteria for being considered in remission....? I'm confused by that....not surprising, I think I stay confused...lol. Chemo brain...my story and I'm sticking to it!

    Wishing you < 20 % on your tumor markers...

    Big hugs, Nancy

    No, you don't have chemo
    No, you don't have chemo brain either. I am not sure I am in remission, but that is what I was informed by my very young MD Anderson physician. My hometown oncologist won't label it remission. However, my September PET scan at MD Anderson did show no cancer activity in my ribs and they saw sclerosis (healing). Whatever, you call it that sounded happy ;-).

    But I have remained skeptical of what the MDA doc said, because my markers are still so high and remission is unusual (but not impossible) with mets.

    But next month is my 25th canniversary, so I am a rare bird, I guess? And where are we going to celebrate? You guessed it--Disney World :-)
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
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    I am there!
    Hi Cynthia -- I am riding the bus! Sitting next to whoever is bringing the brownies.

    Wishing you good luck on your appt. on Monday. Praying all goes well and your markers go down to normal. I go for my markers next week (second time).
  • gami43
    gami43 Member Posts: 281
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    I am there!
    Hi Cynthia -- I am riding the bus! Sitting next to whoever is bringing the brownies.

    Wishing you good luck on your appt. on Monday. Praying all goes well and your markers go down to normal. I go for my markers next week (second time).

    I'll be on the bus with
    I'll be on the bus with support and positive vibes for good marker numbers.
    I'll also go to Disney World with you!! What a great way to celebrate your
    big cancerversery. Love & hugs, Teresa
  • Tux
    Tux Member Posts: 544
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    pink bus
    I will be on the pink bus with you Monday! Let us know your results.
    (((Hugs)))
  • Pam5
    Pam5 Member Posts: 232
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    Tux said:

    pink bus
    I will be on the pink bus with you Monday! Let us know your results.
    (((Hugs)))

    Pink Bus
    I will be on that bus - count on it!

    Pam
  • Texasgirl10
    Texasgirl10 Member Posts: 668
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    Pam5 said:

    Pink Bus
    I will be on that bus - count on it!

    Pam

    I'm coming too
    I'm coming too, I wouldn't miss it. I'll be praying for good marker numbers & a happy update from you.

    Hugs,

    Dawne

    Ps: I want to go to Disney world too, I've never been & it sounds like so much fun. But since I can't go, I'm counting on you to tell us all about it ;)
  • ThycaAnne
    ThycaAnne Member Posts: 68
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    I'll be with you....
    in spirit & with whatever you need......

    Hugs (gentle) &love,

    Anne
  • grams2jc
    grams2jc Member Posts: 756
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    I am coming!
    Pink silly string AND Mickey Mouse ears, wooohoo!!

    Prayers and positive thoughts,

    Jennifer
  • SIROD
    SIROD Member Posts: 2,194 Member
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    Scans, Markers and How we feel
    Dear Cypress Cynthia,

    You are in that special class of women with long term breast cancer. An indolent kind that has kept you as well as I "living with metastasis".

    I don't have markers that work so there is no measurement for me with blood test. It's scans only. I am wishing you the very best of appointments.

    How are you feeling, that is a good measurement tool too.

    I always know when it returns by how I feel before I have a scan. I no longer like any scan except the ct scan which is quick. I can't lay on those boards that long anymore. I hurt so. Do you have that problem?

    Wishing and hoping all will be well,

    Doris
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
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    SIROD said:

    Scans, Markers and How we feel
    Dear Cypress Cynthia,

    You are in that special class of women with long term breast cancer. An indolent kind that has kept you as well as I "living with metastasis".

    I don't have markers that work so there is no measurement for me with blood test. It's scans only. I am wishing you the very best of appointments.

    How are you feeling, that is a good measurement tool too.

    I always know when it returns by how I feel before I have a scan. I no longer like any scan except the ct scan which is quick. I can't lay on those boards that long anymore. I hurt so. Do you have that problem?

    Wishing and hoping all will be well,

    Doris

    I'll be on
    I'll be on the bus.

    I know what you mean about markers.A friend of mine has problems with them being high but tests show nothing.It is scary.I don't get the marker test because my cancer was Stage 0 DCIS.My doctors said it wasn't needed BUT last July a tumor was found and I asked for one.My oncologist ordered it.She did tell me she would only if I wanted one done and I did for the reason they found a tumor.I also hear marker tests are inconclusive and some doctors don't do them.

    25 year survivor. That is great but you have many more years.My mom lived 60 years dx at 21.

    Wishing you the best on your tests.We will all be there for support.

    Lynn Smith
  • chenheart
    chenheart Member Posts: 5,159
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    Sweet Sister~ you know I am
    Sweet Sister~ you know I am on the bus with you!!!! Crazy thing about the markers, isn't it? For me, it is a good indictor of how I am doing, but I know that you know that that is NOT the case for everyone. And, as you rightly said, it is not the definitive answer for you, either. As always, your Dr seems to be on top pf it. And I already know you take charge of your own life and are so aware and diligent about everything! As you ( and all of us) should be!
    So, scoot over, I want to sit right next to you!!! We have so much to talk about and catch up on!
    Hugs,
    Chen♥
  • missrenee
    missrenee Member Posts: 2,136 Member
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    chenheart said:

    Sweet Sister~ you know I am
    Sweet Sister~ you know I am on the bus with you!!!! Crazy thing about the markers, isn't it? For me, it is a good indictor of how I am doing, but I know that you know that that is NOT the case for everyone. And, as you rightly said, it is not the definitive answer for you, either. As always, your Dr seems to be on top pf it. And I already know you take charge of your own life and are so aware and diligent about everything! As you ( and all of us) should be!
    So, scoot over, I want to sit right next to you!!! We have so much to talk about and catch up on!
    Hugs,
    Chen♥

    I'll be on that bus leading the cheer of:
    No PET, no PET,
    Low markers we will get!

    No PET, no PET,
    Low markers we will get!

    I'm just hearing about markers with my recent detection of bone mets. I know I had blood work for these at my last visit, but I haven't had a follow-up yet since the bone biopsy so I don't know what they are. I expect it will all be explained to me soon.

    Hugs, Renee
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    Absolutely I'll be there!
    Absolutely I'll be there! Those pesky markers...I say it's good that your doc watches them, but doesn't diagnose by them...sounds right to me.

    Chen, you're going to have to scoot over too...I want in on that conversation.

    Hugs,

    Linda
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
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    Absolutely I'll be there!
    Absolutely I'll be there! Those pesky markers...I say it's good that your doc watches them, but doesn't diagnose by them...sounds right to me.

    Chen, you're going to have to scoot over too...I want in on that conversation.

    Hugs,

    Linda

    Pick me up too! I'll be
    Pick me up too! I'll be there.
    Big hugs,
    Wanda
  • KathiM
    KathiM Member Posts: 8,028 Member
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    I'm on board already!!!
    ...It's 9 hours later here...Sunday evening...

    Dutch hugs, Kathi
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    KathiM said:

    I'm on board already!!!
    ...It's 9 hours later here...Sunday evening...

    Dutch hugs, Kathi

    Can we get some beignets, please?
    I'll be on board regardless, but I'd love some beignets. So I hope we can stop and get some for our trip.

    Can we all fit in the room with you? If not, we'll be waiting in the bus for your report.

    Suzanne
  • debi.18
    debi.18 Member Posts: 850 Member
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    Can we get some beignets, please?
    I'll be on board regardless, but I'd love some beignets. So I hope we can stop and get some for our trip.

    Can we all fit in the room with you? If not, we'll be waiting in the bus for your report.

    Suzanne

    I'll
    be on the bus too cheering you on!

    Hugs, Debi
  • cahjah75
    cahjah75 Member Posts: 2,631
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    I'll be there
    too with only good thoughts.
    {{hugs}} Char
  • SIROD
    SIROD Member Posts: 2,194 Member
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    I'll be on
    I'll be on the bus.

    I know what you mean about markers.A friend of mine has problems with them being high but tests show nothing.It is scary.I don't get the marker test because my cancer was Stage 0 DCIS.My doctors said it wasn't needed BUT last July a tumor was found and I asked for one.My oncologist ordered it.She did tell me she would only if I wanted one done and I did for the reason they found a tumor.I also hear marker tests are inconclusive and some doctors don't do them.

    25 year survivor. That is great but you have many more years.My mom lived 60 years dx at 21.

    Wishing you the best on your tests.We will all be there for support.

    Lynn Smith

    To Lynn
    Hi Lynn,

    Even with my widespread pulmonary & pleural metastasis, both blood marker tests came back normal. The VATS surgeon said I was studded with tumors. Needless to say, no more blood marker test were ordered.

    The difference between your mom's cancer and CCynthia is her cancer recurred in her bones (distant recurrence aka as stage IV. Not all recurrences are stage IV. Some are local or regional and those who have either of these will live as it remains curable. There is no time limit for a recurrence it can happen up to 30+ years later. When it returns many years after diagnose, it is considered indolent, (a slow growing cancer) it is usually hormonal positive.

    Breast cancer is a terrible disease and some day it will be eradicated from this planet. I won't see, maybe you and others will. I do believe that we are making great strives.

    Best,

    Doris