I am Ibrance/Faslodex/Xgeva for almost 2 years. Since July CA15-3 is rising. My latest bloodwork this week had it at 278. It is up by 84 from last month, last month was up 54. A very steady upward trend. I had CT scans in December and March that indicate stability in the bone mets. I have another CT scan next week. I feel good, my weight is stable, have a good appetite and good stamina. I try not to worry about this number, but that is difficult. My recurrence and diagnosis of MBC happened in 2014 when it was discovered that I had a large mass on my spine at T8. At that time CA15-3 was low, under 10. So I am wondering if anyone else is having CA15-3 rising and what may be causing it. I will speak with my oncologist on June 2nd after results of the next CT. He has been saying that he feels the physiology of the cancer is changing. Has a poop analogy. Some people poop everyday, some 3 times a day and others every other day. Says we don't change treatment based on bloodwork, but on imaging. Any thoughts????
CA15-3 steadily rising: I am Ibrance... - SHARE Metastatic ...
CA15-3 steadily rising
Although not all oncologists pay much attention to cancer markers, they are a sign that cancer may be worsening. If I were you, I would certainly want to know why the ongoing increase. I would ask my oncologist to ensure that my CT scan covered internal organs besides my bones. Not all CT scans are equal.
I think your oncologist needs to do more than speculate that the "physiology" of your cancer may be changing. It seems to me that biopsies are used precisely to determine whether the cancer cells have mutated.
The poop analogy seemed particularly inappropriate to me. It might be well worth considering a second opinion if your June visit doesn't satisfy your concerns.
Hugs,
Cindy
Hi there! My 15-3 has been steadily going up every single month for over 1 1/2 years. Started at 187 before treatment (Ibrance/ Letrozole/Xgeva) and got down to 68 at it’s lowest staying there for almost 1 year. Now it’s at 268. I’m up to a PET scan every three months and just had a brain MRI last month as well. All my scans are coming up NED, but my doctor, and I agree, thinks something is brewing somewhere. I feel fine, and have no signs that I can point to that might be worrisome. I have lobular carcinoma which can apparently be harder to detect. When I was first diagnosed MBC in 2019 I had easy to see lesions on my L-2, 6 ribs and clavicle. M doctor and I had a long conversation last time I saw her and we decided to change treatments at this point from Ibrance/Letrozole to Verzenio/Letrozole. A lot of doctors won’t change protocols until a scan shows progression, but I requested this change, and my doctor agreed. I wanted to make a change before the progression showed up possibly somewhere that could be quality of life altering. I know that eventually it will be inevitable, but for me, quality of time carries more weight than quantity. Who knows, I might end up back on Ibrance, but for now, I think the change is warranted for me. I hope you can find the answers you’re looking for. This is such a complicated disease. Take care!
You may want to ask doc for new FES PET scan that detects lobular easier due to estrogen. I had one, and it finally showed the cancer in my stomach, which no other scan did. The cancer in my stomach was originally only found through endoscopy because I had symptoms.
I have been meaning to ask my doctor about the FES PET, and I keep forgetting. From what I have seen in brief searches, it may not be available where I live, but I have to look into it better. Lobular seems to like going to the stomach, and intestines.....and it's so hard to detect on scans, I'm glad the FES PET is now becoming an option for those of us who have lobular. Thank you for your information!!
I did get the FES as I’m Lobular also. It was so different from the CT bone scan which showed I was speckled with Mets. Turned out I only had 3 bone Mets. The other was degeneration and previous injuries. I also know someone who had lots of tests and found her Mets In Her stomach when other tests didn’t. Then she had a EGD and it confirmed it. I hope you can find a place who has it.
I am similar… lobular and switched from Ibrance to Verzenio just a few months ago when my markers jumped up to 269 and so with out documented progression my onc wanted to make the move while I was well as he said it would be harder to right the ship if I got sicker. He switched me to Verzenio and that first month while I waited for it to slowly work I worried as my neck Lymph node in neck grew… then subsided… my bones feel better BUT now SOB when I walk up hill. And now I hear that the CT scan medium is hard to come by so who knows if I can get the next scan to figure this out.
Thank you for sharing your information. I feel good about switching to Verzenio from Ibrance next month. It sounds like our doctors have similar viewpoints, better to stop something in its tracks if possible. Have your markers gone down at all since you've switched? I heard about the problems with contrast not being available.....I was going to look into seeing if it was CT, PET, or MRI contrasts, or all of them that are in short supply. Ugh, if it's not one thing it's another!!
My Dr wanted me to come back in a few weeks because the markers were stable or down a bit but not dramatically… so wanted to give the drug time to really work. A few weeks ago he warned me about the CT scan medium shortage but I think it isn’t affecting PET which I recently had to have.. so I think he said now that we have a previous pet we could get another to see the difference. But otherwise he would be only happy to do CT scans. I have new shortness of breath and worried so it lung involvement so I think I do need a some sort of a scan.
I hope that your next scan comes up with nothing new, scans can be stressful. I’m glad to hear your markers are stable and even down a little. Even small victories are grand with this disease! I’m sending you good thoughts and good wishes for your next scan!
Hi Betty, I feel like I’m an advocate for the FES Pet. You’re Lobular as am I . I am also ER/PR+ HER- and regular pet I was told will not be accurate. The FES Contrast sticks to estrogen for a more complete diagnostic. If you can get it - I think you’ll have more confidence on what’s going on. This dang Lobular is so sneaky, and I worry it won’t be seen. I feel better since this scan. I hope nothing is brewing for you.
So helpful… maybe that is why nothing has been found…fearing it is in my tummy as starting to have sub acute nausea all the time.
Not sure if it was CA 15-3 or another marker I had steadily rising 2 years ago. I kept bringing it up and my onc kept saying it’s not reliable. I felt like we were wasting so much time doing nothing. A few months later and after several ER visits and vomiting several times a day for weeks, my family doctor finally ordered an endoscopy and the cancer was in my stomach lining. I have a new onc now. So ridiculous to not take some kind of special test when the numbers were steadily rising for months! I was so angry and disappointed! Better to check on rising numbers rather than do nothing.
With lobular they always are worried about that with me. So how did they treat it and how are you doing now? Hope you are doing ok?
Thanks! Yes, mine was the lobular that changed. I’ve also got ductal. I’m now on Ibrance and Tamoxifen. 🤞
I’ve heard that Covid shot can make them rise, but other than that, please do not ignore. If they continue to rise, I would investigate.
One more thing for you. Last year in August I started having the same symptoms with my stomach. I was losing weight again and felt like I couldn’t eat. I didn’t have a definitive reason why, but I know my body. Something wasn’t right. I told my doc after two years on Ibrance and Letrozole that there was something wrong and I wanted to switch to Xeloda. I pay attention more to my 27-29. It was at 374 still after two years, and I switched to Xeloda and fulvestrant in September of 2021. After eight months, I’ve gained my weight back and can eat normally again, and my 27-29 is down at 105 because I’m still covered from skull to femurs and all bone marrow. Sometimes even if there is nothing showing, you can direct your healthcare. Best decision I’ve made. I am doing a lot better on the Xeloda and living a fairly normal life. I also had an endoscopy in February. They only found the cancer in one part of my stomach versus the three spots in different parts of my stomach. It’s been so nice to feel better.
Thanks for all of your helpful comments. I had another thought today. I have a hiatal hernia that is causing me escalating discomfort in the past few months. I am now wondering if that could cause the CA15-3 to be elevated, or that there may be cancer involved with it. I have an appointment with my GP in the next couple of weeks to talk about this. I will also speak with my oncologist about it as well. There can be so many things that can affect us all. This is a very giant puzzle. Thanks for all of you for your experience and insights.
My oncologist had the same approach. Basically the very same thing happened to me, several months of climbing numbers, slowly at first and then by higher increments. I didn’t worry too much because I felt good and scans were essentially stable. The last few months though when the numbers were going much higher (I think over a thousand) I had been getting random pains in my pelvis that were new/different to previous pain experiences. Then I had a pelvic MRI for another doc (For a different reason) and that showed new lesions. So I switched to Lynparza and it’s been going very well.
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