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
Thank you again, had no idea markers went that high. In my two and a half years they have never been so high, so it was a kick in the teeth....dr wanted me on Xeloda...insurance said no....But thank you so much!
Drug manufacturers often have subsidies for expensive MBC drugs. If you contact your cancer, someone there should know how to apply for them.
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!
Thanks for the kind comments! I actually don't think my science background is critical to my understanding medical journals. I only read the summaries of results which appear in the abstracts one can read for free by simply going online using a heading such as "breast cancer.org", or "breast cancer research"...
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....
Thank you so much! Such a comfort! I will try to find something to exercise some at. I have neuropathy from precious chemo so bad I can hardly walk and awful back pain. But I can try something, as you guys have.Thank you so much!
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??
Yes was on Xgeva for first year or so and doc took me off when I startes having some mild jaw pain.I am thinking of asking him about trying it again. The jaw pain may have just been from cancer in my mandible....don't know...
Thank you so much!
Yes just keep the gum health, I am already on the xgeva for 3 years now, My Dentist also prescribed me the mouth wash I do it daily also use the water pik for gum health. no problems!!😀
Thank you so much! That is very reassuring!!!
Hi Tuckermom,
My Ca 27-29 tumor marker was 9000 when I was first diagnosed (de novo stage 4 with mets to liver only). That was in 2014! Ten years later I am still doing very well, am on 3rd line of treatment. I just started on Kisqali and Faslodex as I had progression to my bones recently. I take Curcurmin for my back pain and that helps. I've also used lidocaine patches to help with pain. It's a long journey and we all have those days when we're discouraged and that's ok. Tomorrow will be a better day. Stay positive, have friends say extra prayers and know that this group of people are rooting for you!!
Hello SaraJukebox! In about 3 years 8 months I am now on my 4th or 5th line of treatment...lost count...nothing seems to have any staying power...YET...and yes,.I have taken curcumin from the very beginning....still thinking of pursuing more massage...I know conventional med says no, but there is something to be said for relieving discomfort in my view. And is more reassuring to k ow about the possibility of uber high tumor markers. Thank you so much!
I’m so sorry about your anxiety and pain! It’s certainly frustrating when you add the unknowns in as well but I’ve heard mixed things about markers so would encourage you not to be too scared. I’ve got extensive bone mets throughout my entire spine, ribs, and pelvis. I have had radiation which has helped and currently on another round for lumbar pain which can be excruciating. Also on Xgeva along with Afinitor and Aromisin. I will be praying you find the right combination and can be as pain free as possible!
Oh yes, that lumbar pain can be excruciating....I am open to trying new things. I have just started some red laser therapy (I think that is what it is) that I am anxious to see if it alleviates pain!!! I just fin ished my first treatment an hour ago and am hopeful for a good night's sleep!!! Thank you for your response and I pray the Lord gives comfort and strength to all!!!
Hello Tuckermom I empathise with you. I was diagnosed with metastatic breast cancer in August 2021 and started on Ibrance and Letrozole. Had treatment delayed and reduced a few times until stopped Ibrance. Had six months on Letrozole alone before that stopped working and I was given Extemestane which stopped working after three months. My next treatment was Capecetabine which was working well until it wasn’t and then had a mastectomy and the histology found the tumour was now HER2+. Next was phesgo plus capecetabine. Which proved disastrous as it affected my heart function and I was taken off all treatment until my heart recovered. At the moment I’m waiting for this to happen. But like many of us we cannot afford to let it beat us and I’m keeping spirits up and praying with the support of a wonderful family. So don’t get down. Think of all the good things around us and fight. God bless my prayers are with you
Please don’t fret over the CA15.3 markers. I started out at 374 six and a half years ago. I was on Ibrance for 3/12 yrs until markers started rising. Most people only get 2yrs on Ibrance. Tried Verzenio after that, but failed. Was on Xeloda for 1 1/2 years. Faslodex too for a bit. I still get Xgeva injections every 3 months since the beginning. When markers stated going up again big time, I had to start infusion chemo- spread to the liver (I have MBC throughout from my neck to both knees, including ribs. The worst is the thoracic & pelvis & hips). Was on Taxol for 9 infusions then became allergic. Then on Adrimycin for a weeks but it got my CA15.3 to 200 (the markers were at 1558.0). Was put on Cytoxin & Methotrexate for months but markers started shooting up again. So, had another bone biopsy and now on Enhertu. The full dose dropped my CA 734 points in 21 days but the effects were tough on me so I have gotten a lower dose since but markers are not going down enough and/or rising. My CA15.3 is 1358. Next Wednesday I get the full dose. It’s the only way to know if the Enhertu will work or not. The lower dose may not be enough b but I’ll deal with the side effects if it does work. If not another plan is already in the works. There is so much more medicine out there for us now. It is trial and error for each of us because everyone is different when it comes to whether medicine works or not. What I can say is, keep a positive mindset & try not to panic over the markers. Love your life the best you can (it’s very hard, I know). It’s always going to be take one day at a time. I wish you all the best!
Thinking of you.Sending positive energy❤️
Dear God, help this woman. I'm so sad to read this Tuckermom. I am a mom, too -- Sarahmom and Johnmom, if you will; my heart sits with you right now and I pray, God give this mom more time. All the time she needs.
paxlovid and cdk4/6 inhibitors
Thoughts?
Verzenio alone
Lobular progression to stomach and colon
Progresión 
