Elevated ca125!

[Epinto]

Hi all, feeling confused and anxious as for the first tome ever my Ca125 is elevated. I have breast ca with Mets to the t2 area of the bone and have been doing well on ibrance and faslodex for about two years. Last month my ca125 was 30 and I was hysterical as it never went above 14! So this month is went over the normal range to 52! My gyn had me go for an mri and all came back with no evidence of any problem! I will be speaking with my oncologist tomorrow about all of this. My ca15-3 is stable so I am scared something is brewing somewhere! Anyone with similar circumstance?

[Bluebird77]

Hi Epinto. I know you are nervous, and how difficult this is, as I have been there myself. Its not easy to stay calm, but try to remember that elevated tumor markers may not mean progression, and sometimes they fluctuate without us getting answers as to the cause. I have also had my CA2729 stay within close to normal range for a year and a half when it shot up from 39 to 53 in December. The next month it had come down to 43 and the next 37. Because yours continued to go up does not mean that they won't come back down. Your oncologist will probably want to order scans to see if there is anything to worry about. My oncologist just told me a couple of days ago at my appointment that they do not rely on tumor markers alone, it's part of a puzzle and they factor other things in. He told me that he has patients whose tumor marker shot up into the thousands, and after scans no progression was found anywhere...he considers those patients stable in spite of the tumor markers. I hope this helps in some small way. You're strong and you're not alone! Please keep us posted.

[Epinto in reply to Bluebird77]

Thank you for your reply. I am waiting for a call back from my doctor. Waiting for answers is hard as you know. Will keep u posted and stay well.

[Epinto in reply to Bluebird77]

Took my pet scan last week and it came back fine. Feel like my foot is off the mine field!!! I still have no answe for the elevated ca125 for the very first time ever. It will be checked again st the end of the month. We’ll see but feel a bit relieved for now.

[Bluebird77 in reply to Epinto]

That is wonderful news!!! So happy for you!

[Epinto in reply to Bluebird77]

Thank u! We all need good news!!! Bless u

[Hidden in reply to Epinto]

Happy for you. I was diagnosed in July 2016, was a wreck at first. I could not move my arm thought it was torn rotator cuff again. Back hurt so bad could hardly walk. Burning in ribs. Went go MRI of shoulder, they found cancer in hips , ribs, arms, back. Bone biopsy showed breast cancer in breast so small it was not found on mammography in sept of 2015. Had radiation on arms , spine, pelvis, ribs. It was to late to do anything with breast since it already spread. Felt better after radiation. I could walk and use arms. Thought I was going to die in months. No one will give timeline. Made a will, cleaned closets, house. Getting ready to die so kids do not need to work to hard. Was on letrozol, Ibrance, xgeva. Last 3 months markers going up so I am now on Ibrance,Fasalox, xgeva. Starting to have more hope joining this group. Hearing people say they are living longer. I now figure it is no worse than someone dealing with other things. Diabetic , stroke, heart, they all could die any day. I just try to tell myself it could be worse. Hope your markers go down and you feel hopefull again.

[Epinto in reply to Hidden]

Sounds like u have been through a lot but in spite of it all trying to be positive! Nothing is for sure in life, just live each day and enjoy all the sweet moments!

[Hidden in reply to Epinto]

Thank you! Hope all goes well with you.

[Barb5 in reply to Epinto]

Great news now you get to relax for awhile!

[Pjriggs]

I will pray everything is still good for you. When I was put on Ibrance my Oncologist said it was really great but was good for about 22 months and then it stops working and they have to try something else. She also said not to be alarmed because there was a lot of other things they can do when that happens.

[Epinto in reply to Pjriggs]

That is what I am thinking, that perhaps the ibrance stopped working. I have been on it for about 22 months. Very nervous of course but going for a pet scan this Thursday and that should give some definitive answers. Feel like a game of roulette, round and round it goes and where it stops no one knows!!

[Pjriggs in reply to Epinto]

I know you have to have that on your mind, but don't stress over it cause if the Ibrance has stopped working they have so many other things they can put you on that will do as good as Ibrance. I have you in my prayers, and keep us posted.

[Epinto in reply to Pjriggs]

Thank u and I will keep u posted. Going for my pet scan Thursday. Be well and prayers to u too.

[spouseM]

I have heard that in some people the markers are not a good indication of disease progression. As I understand it they are not even sure the markers themselves are from an interaction the body has with the cancer, the cells themselves, or something the cells give off. I say, trust the images, and be happy of your health!!

[Epinto in reply to spouseM]

Thank u for your response. Going for a pet scan this Thursday which will hopefully give more answers. I know the markers can be confusing and sometimes I wish they would just not do them and rely only on symptoms and scan results. Be well.

[bankusboysmom]

Not sure where 22 months info comes from, but I'm over 36 months and still doing well. My numbers have jumped up and down over the 3 years and I've never gotten below 50 and yet I've been NED for over a year. It's tough at first but hang in there.

[Epinto]

Thank you and glad you r doing well. Glad to hear the medication has been working well!! Going for a pet scan on Thursday so I am quite nervous. I am accustomed to the ca15-3 bouncing around but it is the first time my ca125 ever went up and now out of the normal range at 52 do I am confused and worried that this could be a progression somewhere in my body. Waiting is hard but answers will come and we can only deal with whatever comes. Stay well and thanks for the response.

[Epinto]

That is the marker for ovarian cancer but it also can be for other issues.