How high do tumor markers rise before... - SHARE Metastatic ...

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How high do tumor markers rise before treatment change? It has been rising about 12 points in last 6 months pet scan due in April..

Eliactida1955 profile image
18 Replies

Hello Ladies does anyone know?

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Eliactida1955 profile image
Eliactida1955
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18 Replies
Eliactida1955 profile image
Eliactida1955

Thanks for your reply. I kinda think that way too but it was sound 25 now 51 but we will see as my dr thinks about it told me to wait to see . I’m feeling great. I hope all is well with you. My last pet showed lesion on right leg only but breast ultrasound done because of a boil showed a small new area of concern. We will see.🙏✝️

in reply toEliactida1955

It is more important that you feel well, versus an incremental increase in markets. That’s what my doc keeps reminding me!

Good luck.

Eliactida1955 profile image
Eliactida1955 in reply to

Thanks 🙏🌹

Iwasborntodothis profile image
Iwasborntodothis

Mine went up to 8000 before Xeloda and doc says the record is 100,000 in his office so take a deep breath. We are here with you

Eliactida1955 profile image
Eliactida1955 in reply toIwasborntodothis

This marker is the ca 27-29 which normal is to 38 . Before treatment it had risen to 153 so I guess with the pet comming I will see. Thanks and God bless you.🙏✝️

Timtam56 profile image
Timtam56

Mine were 126 when I was diagnosed. They dropped to 29 after a year of treatment. Now for the last 2 years theyve risen to 61. I'm not going to worry about this. It's inevitable.

Eliactida1955 profile image
Eliactida1955 in reply toTimtam56

Did your treatment change? I will try not to worry but everything I read says usually the cancer has come back but not always. I go for my lab again April 12 -we will see. Thanks for your response and I wish the best for you.🙏🌹

Timtam56 profile image
Timtam56 in reply toEliactida1955

No my treatment hasn't changed. My oncologist says markers can often be wrong. So. I'm going to try my hardest to believe her. This is hard for me sometimes, because I've been let down big time by the medical profession. But I don't want to spend my days worrying. And as I see it... My cancer will never go away. It can only be kept at bay... For a while. That's my take anyway.

Eliactida1955 profile image
Eliactida1955 in reply toTimtam56

I realize that it can only be kept at bay it’s just I don’t want to change my Ibrance. I’ll try not to worry and I wish the same for you. We are all strong ladies here going thru what life has dealt us. I hope all goes well and we can live a few more years -take care!!!🙏🌹

Rhwright12 profile image
Rhwright12

Tumor marker numbers are very individual...Mine barely get to 100 and something is going on....Others on here could be at a 1000 before they find something new...That might not be helpful other than to say u have to track them over time and know u...😀

Eliactida1955 profile image
Eliactida1955 in reply toRhwright12

I hope that’it will spiral down and I won’t know till the week of April 12th. I don’t think mine ever got more than 150s. My pet is due on the 15th. Trying to not worry I guess. Thanks for your response-God bless🙏✝️

PJBinMI profile image
PJBinMI

My original beloved old wise onc told me that a change of 10 points in TM is generally meaningless. I'm a long timer and have heard of women having TMs in the thousands. Not all of us have reliable TMs and most oncs only use them to help determine when to have scans. My onc also told me that she pays most attention to how I am feeling! I've had mbc for 17 years, at least since it was diagnosed 17 years ago, probably a few years before that, and I have never been surprised when scans have found progression. My body just let me know....... And though I have done exceptionally well for a long long long time, my TMs were only in the "normal" range for a few months very early on, probably in year 2 or 3. If I paid close attention, I would be inviting anxiety that I don't need. My biggest worry has been the retirement of my original onc. She was forced to retire about 3 years ago and didn't have a chance to say goodbye to her patients. Hard way to switch to a younger less experienced onc! But to me a TM of 51 sound sounds good. Sometimes things besides progression cause a rise in TMs--dying cancer cells is one of them! Good luck to you. I hope you will have years and years yet.......................

kearnan profile image
kearnan in reply toPJBinMI

17 years! That is without a doubt the longest I have read. I see these days many women with stage iv (and I guess it depends upon the type of breast cancer) are living 10+ years now. So to me it's like having a heart condition where I have to take medication every day and go to doctor once a month. Hmm...maybe I better stop spending and start saving some of my money LOL

PJBinMI profile image
PJBinMI in reply tokearnan

During my first year with MBC, I heard of a few women who had been living with mbc for twenty years. Then when I first attended an MBC conference, there was a woman there who had been living with it for 30 years! That was really hope-giving! My impression is that more and more of us are living longer all the time. About six months into this, the cancer center where I am treated had a weekend BC retreat and I went, wondering if I would be the only one there with metastatic disease, but there were about 8 of us. That was the first time I met others with MBC and it was really wonderful! I also learned that there was a group of women with MBC who got together every month for lunch and talk and I joined the group and that was so helpful.....new friends and we all bonded quickly! That group fizzled out a few years ago as the social worker who had referred patients to it left and no more people joined. I miss seeing others with mbc regularly like that but they really helped get me more comfortable with this.

Eliactida1955 profile image
Eliactida1955 in reply tokearnan

Glad you’re doing so well and I hope I will too-trying to keep positive and I know things could be worse. It’s good to hear there are others living so long with MBC -thanks...🙏🌹

Eliactida1955 profile image
Eliactida1955 in reply toPJBinMI

Such lovely words and it makes me feel so good. I have been feeling better the past week and trying not to worry. I have to realize that it’s not curable and I know it but I want to have more years at least 5-6 more feeling as I do. I’m hoping for this as I am not in pain and feel pretty good . I hope everything is good for you and will be. God bless you always ! We are alive!!!!🙏❤️

kearnan profile image
kearnan

I am going into my fourth year (went by quickly) since diagnosed with stage iv and I have no idea what my tumor markers are. I asked once since I saw ladies on here always knowing what there tumor markers are and getting nervous. I just did not want the extra stress. My onco told me that they do not provide treatment based on tumor markers. I was fine with that and to this day I have no clue what they are. The once a month to the cancer center (still get a CT scan every three months) is more than enough for me. So I don't want all that extra information NOR do I every read any books about it, diets, etc. Sometimes I forget I have it. I am more tired than I was two years ago but I am getting older anyway so who knows.

Eliactida1955 profile image
Eliactida1955 in reply tokearnan

I was diagnosed in sept 2018 and my lab is every 2 or 3 months and always tumor markers which my onc seems to watch. We will see what he says but I feel great and wish the best for you too. I only wish that I could just forget I have it but I don’t feel that good to say this. I have my days and I feel tired at times but no pain. Just joints some days and never taking pain meds. I wish the best for you-I thank god for you ladies that are making me feel at ease. Thank you for this.🌹

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