I think of all of you daily in this fight. I an overwhelmed this morning. Been in this fight roughly 2 years 8 months. Not much luck with any treatment. Not lased long on any one. This last we tried was Verzenio with Fulvestrant. But in middle of treatment, got covid and blew all the good results out of the water.Anyway, to make it short my ca15 was 102 in Sept...I joyfully saw it go down to 82 in Oct and now this morning I see it has gone up 50 poiunt to 135. Needless to say, I am devastated and feel so defeated. I will get over it, but don't know which way to turn at this point. My dr wants to add Itovbi to my Verzenio but hard to locate since just approved. I am Er+, pr+, her2+ spread big time to my bones especially spine...so very painful. Just need to share with someone. Thank you everyone. 💚
Bad ca15-3 report: I think of all of... - SHARE Metastatic ...
Bad ca15-3 report
So sorry to hear. I think it has to be taken into perspective. I started out at 725 and am now just under 500. My oncologist is happy with that, and I have heard of people with over 6,000 still doing OK.
Wow! I have not heard that!!! Thank you, that does help some.When was first diagnosed and unable to walk my ca15 was 65, so had not even considered it going that high....pain has gotten so bad, unable to walk right due to neuropathy, smae things many of you go through.
Thank you for feedback.
Dear Tuckermom,
Don’t be alarmed by the markers! I was on Piqray for 18 months — stable scans but markers kept climbing . In July they were 1389! We changed therapies, I’m on two drugs now and in a couple months, the markers are down to 154. So things can change fast. Also, I don’t know what drugs you’ve been on but there are many drugs besides CDK4-6 inhibitors, especially since you are her2+.
I’m sorry about your pain, maybe you can identify which mets in your spine are causing the pain and have them radiated.
If your onco is not a breast cancer specialist, you could get a second opinion, maybe from a cancer research center? The drugs I’m currently taking are Xeloda plus Tukysa and if you are her2+ you’d add Herceptin to that, the treatment is called her2climb. This was suggested by a second opinion breast onco for my specific situation — my oncologist was not aware of the combination! Second opinions are great. Try not to worry — there will be a plan for you.
God bless ,
Helen
I’m on Verzenio and Faslodex like you. I’m her 2 negative so that might make a difference between us. The cancer is all through my spine like you and I’ve had a lot of ups and downs. I’m hoping that Covid has upset your apple cart and maybe things will be looking better on your next blood draw. I was 478 in 10/22 now I’m at 68 10/24. I’m in 100mg if Verzenio I don’t think that was such a bad swing but I know how you feel. My heart is in my mouth every time the results come through. You don’t say how long you’ve been in this combo but try not to worry. You’re still not very high as look at what I was at. I’ll be thinking about you! Chris xxx
Thsnk you for your reply...we are alike in many ways. I have only been on this combo since first of May. Early June, July, Aug fought with covid and strep and all the i flammation. It really messed me up. But in Sept my marker was 102, in Oct I was so happy it had gone diwn to 82, but now has risen 50 points to 135...don't know why, but so disappointed to see.....thank you Chris!
All the above comments are reassuring, and worth reading! Since I am 79 and HER negative, my experience may not be relevant. However, I find my meds easy to take, and effective so worth noting.
I was first diagnosed with breast cancer at age 60. I had surgery and forgot about it for 13 years until my right arm suddenly swelled. Scans then revealed that my lymph system, liver, and most bones contained extensive mets. I was now 73 so I refused chemotherapy as I decided it was likely to kill too many healthy cells that I wasn't likely to replace at my age.
Since I am a trained scientist, I am able to read medical journals. From my readings, I decided to try taking a double dose of tamoxifen to lower my level of cancer antigens (CAs). This worked beautifully until I told my oncologist that I was taking double, and he refused to re-prescribe it (not in his protocol). My CA markers returned to a high level when I returned to a single dose of tamoxifen.
I then switched oncologists to an older gentleman who was happy to start me on 600 mg. of ribociclib (with letrozole). Over time, my CAs shrank from a high of 190 in September, 2021 to the normal range (less than 30) by January, 2023. I then started to reduce the total amount of ribociclib in my body (it stays for 8 days) by restricting meds to week days first, and then taking 400 mg. I keep close watch on my blood work so I will know if my CAs rise.
Now that I've written this all out, I realize that I should see if I still need to keep taking 2000 mg. (5 X 400 mg.) of ribociclib (plus 5 X 2.5 mg of letrozole) per week. Perhaps, my cancer has stopped growing at my age of 79!
That is amazing Hazelgreen! You are doing so well. Hie I wish I was able to read, understand and apply the information in the journals, etc.You are an inspiration!
Just like SwedishSissi has stated, your markers are low. There are those of us whose markers are in the thousands. We all were in your shoes in the beginning. Having mets in our entire skeleton for years, we understand your pain. We have gone through many drugs that haven't worked and worry what's next. Hang in there, we are here for you and know we all have the same thoughts, fears and frustration. Easy to say stay positive, move forward, but we need compassion and empathy. Perhaps people will share there highest markers yet and help calm your mind. Blessings and hugs.
That has helped so much, like I said, I had no idea the markers would go so high, so thank you!!! Just wondering what all of you do to ease the spine pain...is so bad sometimes I could scream. I want something other than pills. I have used heating pads, massage, some external creams....
I don't like taking pills either. They gave me palexia. I prefer to use oils and biofreeze cream or patch. It is important for me to be nice to my liver and kidney's. A couple of years ago, I had rads, now it is the same place. Go figure. Remember we are all on the same journey and here for each other.
have you tried Enhertu ?
Yes! Had major reaction to that one!!!
From my understanding the CA15/3 test provides results based off inflammation (cancer and progression typically create inflammation). Course there are other factors that create inflammation as well that might not be related. Typically a CA15/3 test is used as a data point to find trends over a period of months. I have read of ladies with very high CA15/3 and after a scan show no progression while others show no increase or even a decrease in CA15/3 only to scan and show progression. My Onc no longer uses a CA15/3 or a CA27/29 due to the mixed results and the angst it can cause in her patients. Do your best to stay positive (very hard to do) as stress and negativity has been shown to increase inflammation. I use mediation, walking and sunshine to help get my mind off bad reports. Although it doesn't help 100% of the time but many times it does help clear my mind. God Bless!
I just want to add a caution about abandoning tumor markers. My scans were stable but markers kept going up. Turned out that I had brain mets which aren’t detected by PET scan. If not for the markers, my brain mets wouldn’t have been found early.
Looking back, HelenWi, did you have any other symptoms of the brain mets? They were a little concerned about that with me earlier....
Praying that your next treatments will be long lasting and successful.
I am on Xgeva injection for bone, once a month, my bone now is clear, very effective I am not sure you are on it or not??
paxlovid and cdk4/6 inhibitors
Thoughts?
CA15-3 never shown my bc
Lobular progression to stomach and colon
Progresión 
