Tumor Marker Confusion

[Fiercefighter13]

Hi all!! Hope everyone is having a good weekend! Here's my question, has anyone had a rising and high CA 15-3 with a normal CEA marker test result? My CA 15-3 has been rising steadily for over 2 years. It never got to a normal level after starting treatment (Ibrance, Letrozole, Xgeva). Before any treatment I was at 179. After beginning treatment it got as low as 69 and lasted there for a few months. Now, three years in and having been rising, it's at 368. My CEA marker test result before any treatment was at 30, went down to 3 and is now at 7.7. Respectively, the CA 15-3 and CEA marker tests are not rising at the same rate, even given they are much different number scaling. I switched from Ibrance to Verzenio two months ago and my markers took two big jumps after switching. I would think "kill off" numbers rising would be going lower by now. The whole thing has me confused. I have PET scans every 3 months and they have all been NED......I have no idea what to make of any of this. My doctor seems concerned and perplexed as well. Anyone else go through this?

[Thriver49]

My first question to you did you get any of the Covid Vaccines or Boosters??? I had this happen after 9 years of very low markers and after taking the vaccine started to elevate and after the booster out of range big time. I am now a Stage 4 on all kinds of meds and spread to my bones. No one has any answers for me but I do believe the vaccines and boosters have alot to do with this. As of now my markers are very low due to the right meds but I have to be watched the rest of my life. No more Vaccines or Boosters for me. I am in the fight of my life now. I even got in touch with Merdona and they have no answers either just alot of talk like "we don't know". My heart tell me NO MORE!!

[Fiercefighter13 in reply to Thriver49]

Thank you for your input! I never got the vaccines or the boosters. I chose to isolate instead out of a sense of responsibility to not only myself but to others as well. It’s been a hard choice to live with but it was the right choice for me. I have a degree in microbiology and because of my background I chose not to get the jab. For myself, then that would not be why my marker numbers are all over the place. I think it’s time for me to face the probability my protocol is no longer efficacious for me. Not a reality I’m liking! I hope you continue to do well with your current meds. How many different meds have you tried? Is it ok for me to ask, what meds are you on now and any side effects? Thank you again for responding, take care!

[Thriver49 in reply to Fiercefighter13]

Its ok I am on Ibrance, Letrozole and XGeva injection and doing great. Side effects but nothing I cant handle. Just had a Pet Scan and not signs of Cancer! That is a good thing. Make sure you find out why this is happening there has to be a reason!

[Hazelgreen]

It seems to me that it would be worthwhile for you to consider the possibility that your PET scans are missing some part of the body now being attacked by cancer. According to the Canadian Cancer Society:

"Not all cancers show up on a PET scan. PET scan results are often used with other imaging and lab test results. Other tests are often needed to find out whether an area that collected a lot of radioactive material is non-cancerous (benign) or cancerous (malignant). Recent surgery, chemotherapy and radiation therapy and some medicines may affect the test results."

Regards,

Cindy

[Fiercefighter13 in reply to Hazelgreen]

I agree. My last PET/CT was 3 months ago and clean so I also had an MRI which was also clean/NED. I have lobular carcinoma which can sometimes be difficult to read on any scans especially in the visceral organs. Unfortunately FES PET scans are not available anywhere near me. I have to rely on markers more because of that and they have been pretty accurate with me so far. I’m thinking it’s time to discuss switching endocrine therapies at this point, with my doctor.

[13plus]

I personally would never switch drugs only going by markers. Where were your mets originally? Mine are in the bones and I started to have physical symptoms and eventually new bone lesions showed up on the scans. But my markers had been rising over several months. My point being I took Ibrance for as long as I could and the obvious new lesions showed before I switched. We only have so many drug choices so you want to "milk" each of them for all their worth before switching. Plus markers are known for not being a gospel indicator of how the cancer is doing. I'm surprised your oncologist is relying on those alone. Perhaps consider a second opinion elsewhere

[Fiercefighter13 in reply to 13plus]

My original Metz were in both hips, clavicle, 6 ribs, and spine so all bone. My doctor has not suggested changing meds. I’m more focused on changing the Letrozole to Fulvestrant. The switch from Ibrance to Verzenio was due to my neutrophils, platelets and RBC being too low and I was not tolerating Ibrance very well. I’m lucky since I have no side effects at all with Verzenio, and my blood work is solid now on the highest dose. As far as the markers, lobular carcinoma tends to gravitate to visceral organs, and is exceptionally hard to see on scans, until it’s so out of control that it impacts quality of life…..such as intestinal obstructions, peritoneal lining, stomach, etc. requiring surgery and other invasive treatments, in hope of extending life. For me, I am choosing quality of life over quantity. It’s a personal choice I’m making from an intensely researched situation given the lobular nature of my disease and understanding it’s behavior. Still, I’m sure it will be a lengthy and in depth conversation with my doctor. I appreciate your advice, thank you for responding and I will be giving your view point more thought.

[13plus]

Ah that all makes more sense now. I didn’t realize you hadn’t tolerated the iBrance well and that was one switch I was wondering if it was necessary. That’s great that your bloodwork has responded well to the change and you feel better on it. I don’t have the lobular aspect so I wasn’t fully aware of the impact that can have during progression. So I get now where you’re coming from and I too have always pursued the quality of quantity route! Yes that’s a great idea to consider switching to fulvestrant, even though it is, literally, a pain in the buttocks but there are ways to minimize any annoyances with that. Other things to consider down the road - getting a vaginal untrasound to check the internal cavity there. A colonoscopy too. But I’d try the fulvestrant first and see the marker response to that.

And/or look into getting a full genetic profile for the best drugs for you, they can use existing biopsy material nowadays