Has anyone experienced their CA27/29 tumor markers going up every month with no symptoms and all scans negative. This is me I have no symptoms and my bone scan, PET and CT scans within the last couple months have all been negative. So far we have not been able to locate the metastatic breast cancer. I have Lobular MBC which I guess is hard to detect. I was first diagnosed in 2005. Then I was clear for 13 years when it came back in 2018 in my ovary which we removed. Again my markers stayed in the normal range until last April when they slowly started rising. At that time they were at 40 and now today they are at 168. I am just wondering if anyone else has had this experience.
Mimi
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Mimigram
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Hello Mimi; My oncologists since my2013 diagnosis have never paid attention to the tumour markers. They believe it isn't reliable so don't even comment on it.
I have heard the same. It makes me wonder why they even bother. Mine have been going up steadily at low increments food the last year. Scans still stable. I'm actually in here now having scans. So.... We'll see how they are this time. I had a really bad pain episode 2 weeks ago. So they have given me much higher level regular, slow release, oxycodone. The pain has regulated and I'm hoping my metastases are not on the move.
Hi Mimi. Same happened to me. I was on Ibrance and Letrozole. My Doctor determined those drugs stopped working and changed my drugs and now those markers are going down.
I went from Ibrance & Letrozole (worked for 3 years then stopped)
Next was Kisqali and Faslodex and that stopped working after a little over a year.
I have ERS1 mutation which causes those drugs to stop working.
So next week I will start Elacestrant which is a new drug that came out this past Feb 2023 to treat woman with ERS1 mutation. Fingers crossed this one works a long time.
I read an article about the long history of Elacestrant. Interesting and upsetting read. Upsetting part is the control the drug companies have at shutting down a cure.
Tumor markers are what I have to go by because scans don’t pick up my cancer. The only one that sees the cancer throughout my whole spine and bone marrow is the MRI. I also have lobular. FDG PET scans and CT scans all say I’m clear when I’m loaded. I would definitely think about a switch with them rising. I switched from Ibrance and Letrozole to Xeloda and Faslodex, and tumor markers headed back down. Please don’t ignore the tumor markers. For lobular, sometimes that’s all we can count on.
I did read on this website that FES PET which is an estrogen search works for Lobular. My insurance company doesn’t have that particular pet scan. I would have to go out of network. Which could be costly.Mimi
I did have the FES PET, and it finally saw the cancer I knew I had in my stomach through endoscopy, but, sadly, the doc said that it takes up too much in the peritoneum to be of any help. I did the PET through a clinical trial and flew to Utah. I was hoping to know if I have it in the peritoneum. Would probably have to have laparoscopic to see, but since I’m doing okay right now, I’ll hold off on that.
Hi, Praising. I was on Faslodex for 25 months. I am not on it now or anything, but I will be going on Orserdu/elacestrant soon. I found that I have the ESR1 mutation. I’m not going to lie. Yes, a lot of times the person giving the shot wasn’t great, so I would have some pain after but only for a day or so. I would do it again if I had to. As far as I know, I didn’t have any side effects from them.
Yes I’m in the same situation and have lobular. Markers jumped from 20s to 100. I’ve also lost weight so I know something is going on!! Last scan was stable but will re-scan soon because of markers and weight loss.Lobular is sneaky and can hide because it forms layers, kind of like spider webs.
My game plan is to switch from letrezole and ibrance to letrezole and kisqali and see if it does anything. But If my scans do show progression I’m switching to afinitor and aromasin.
Have you ever had an endoscopy? If not, please consider having one, but please note that even though my stomach looked normal, thankfully, my gastro took five samples. He was shocked it came back with breast cancer. He ended up having my primary tell me because he couldn’t believe it. He gave me more years to live, and I am forever grateful for him.
My primary is the one who suggested it. Can you call a gastroenterologist yourself and set one up? And, please, if you have one, tell them to take biopsy samples, even if everything looks normal. Use me as an example of how important it is.
If the scans don’t show anything I will definitely make sure I get scoped. What meds worked for you afterYou found out they were in your GI/stomach? I’m hoping kisqali will be better than ibrance. If not she wants me on afinitor/aromasin combo. I was thinking xeloda but she says she does the anti-estrogens before oral chemo
My cancer came back in my ovary and my fallopian tube which was removed. It showed up as a white blob on the pet scan so did not know what it was until we did the surgery and biopsied it.
I got my ovaries/fallopian tubes removed years ago. Scans did not show any cancer but when they biopsied them they were both cancerous. So, again showing how sneaky lobular is..
I had a hysterectomy back in 2012. They never mentioned any cancer in my uterus. I still have my ovaries. It was only a partial. That’s scary to think the same thing could happen. I had a CA125 last year, and it was 1400. I’m going to ask for another one at my next visit. Since the tumor markers have dropped, I’m thinking that one should have dropped as well. We’ll see. I didn’t want to do anything with knowing the tumor marker number was high because I wasn’t feeling any symptoms there.
I was on Ibrance/Letrozole. My tumor markers only dropped by around 120. They were 490 when I started. I was on that for two years and started to have the same symptoms of weight loss and feeling full after a few bites. I’m now on Xeloda/Faslodex. It’s been 11 months. My tumor marker went from 374 and is now 114. I’m still covered from skull to femurs, so I think it will never go to normal. I am able to eat and have gained 13 of the 17 pounds I lost. I will know when it’s no longer working. So far so good.
I’ve got lobular too. My markers went up, my oncologist ignored them and I knew something was going on. I lost 17 lbs. Then 5 months after the initial nausea I started vomiting everything I ate. I was losing a lb. a day and had no energy at all. I spent a month losing weight, losing blood through my stool and lost 45 pounds total. 3 trips to the ER. Finally my family doctor ordered an endoscopy and my stomach lining was full of tumors. I switched to Ibrance and Tamoxifen and I’m doing very well now. I ended up having to have 2 blood transfusions also because I lost so much blood. Lobular is sneaky and I wouldn’t let your oncologist ignore rising tumor markers. I should have insisted mine do something much earlier, but hindsight is 20/20. Good luck 🍀
Thank you for your response.Lobular is sneaky I agree. I will be talking to my oncologist on Tuesday and I believe she is willing to let me start Ibrance. I just don’t like the side effects but I need to stop it in its tracks before it gets out of hand.Mimi
I'm a long termer with MBC, lobular, denovo bone mets. diagnosed in 2004, before alot of the meds available now. There have been times the CA27-29 has gone up with nothing else suggesting progression. My long time wise old onc retired about four years ago. Shewas always slow to change treatment for me as I did so well for so long on each drug. I've been on meds specifically for bone mets. first Zometa, now Xgeva the whole time 've been in treatment. (cat just walked across key board and I don't know how to get rid of italics...sorry). I got almost five years from Femara (Letrozole), then over 9 years from Faslodex, and now have been on Exemestane for around 4 years. Educating myself about bc, mbc, lbc and mlbc has been one of my ways of coping, and one of the big things I've learned is that what works for one will not necessarily work for another. We each have our own unique set of cancer cells. and maybe our own bunch of other cells too. My onc and the genetics counselor she sent me to both think my family carries something in our DNA that allows us to keep cancer under control. My paternal grandmother had advanced endometrial cancer in her 70s in the 1950s, when treatment was also less advanced than now, aqnd she lived to 102. Two of my cousins on that side of the family and did much better than expected with other cancers. I have tried to find a way to archive my cells for research into what it is in our DNA and whether it might lead to something that could help others, but haven't found anything like that. Back to you, it's so hard to know what the "perfect" timing is for changing treatment. My thinking for n=myself is that I'd rather stay on something that has worked a tad too long than change a tad too soon. But that isn't best for all of us. All you can do is make decisions with the info you (and your onc) have. I hope you will have peace with your decisions as well as doing well in this crazy living with mbc journey!
How did you tolerate the falsodex. I’m being switched from exemestane 3 yrs because of enlargement of lyctic sacrum lesion and back to Ibrance as well. Encouraged by the 9 years.
I had that happen, markers went up for almost two years out of three on Ibrance and Letrozole....lowest was one year at around 67 then they started climbing for almost two years up to the 500's. My PET's, CT's, and MRI's are all clear. I have lobular as well. My doctor finally ordered an endoscopy, and there was the sneaky monster! I'm on Verzenio now and Fulvestrant, markers are going down again. Lobular loves the stomach, colon, ovaries (mine were removed when I was diagnosed metastatic with lobular), and the stomach lining. Most lobular carcinomas carry the CDN1 mutation which gives it a predilection to behave similarly to Linitis Plastic Gastric Diffuse cancer, even though they are not the same thing. Given that, it's always best to keep up with routine endoscopy and colonoscopy if you can.
I had an Endoscopy & colonoscopy last Feb where some things were biopsied and results were negative. Thank you for your advice. I will stay on top of it.
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