Hello!! My mom had her tumor markers checked on Oct 17th 2023. They were 333 that’s when we found out her anfintor wasn’t working 2nd line treatment. She was on it about 6 weeks. Around Nov 15th she started xeloda so for about a month she was on nothing! She’s did 3 round of xeloda now. Her oncologist checked her markers yesterday and it was up to 430. But I’m thinking could her markers have not went up more when she was on no meds? She’s comparing her markers from Oct??? She wrote her today and said your markers continue to rise . Surprised with how good your feeling. Because she’s feeling really good?!? Will check scans in a few weeks. Just seems to us with her being off meds almost a month . She would have her markers before now to have something more recent to compare them to?? We may be confused with how markers work? Any thoughts are appreciated? Also in the last 4 weeks she lost her dad and brain radiation !
tumor marker question: Hello!! My mom... - SHARE Metastatic ...
tumor marker question
markers can rise when treatment is working because the blood test can’t tell what’s a dead cell and what’s a living cell. The only real way to know is to have a scan.
I wouldn’t have changed treatment without a scan. I had progression in a scan last March. Had another scan 12 weeks later and the progression was receding. I stayed on Exemestane and still am on it.
I know some doctors react quickly to tumour markers but I’d prefer to get the max out of a treatment before moving on.
I think it would be reasonable for your mother to tell her oncologist that she would like to stay on each drug longer than six weeks before deciding the drug isn't working for her. She will soon run out of options at this rate!
Another idea is to request a second opinion from another oncologist. All physicians are not equally competent! Your thought that your mother's tumour markers may actually have been higher when she was on no meds for a month is reasonable.
My markers have been confusing as well. I wouldn’t worry at all about your mom’s situation. I started on Ibrance; PET showed progression and markers were 169. I stopped it for a month and markers stayed in the same range. PET after new drug showed definite improvement but markers stayed the same! Then markers started going up and PET showed mixed results but not bad enough to change drugs. (Did use cyberknife on a couple mets) It’s been more or less stable overall on the next two scans and TM have bounced between 360 and 450 for 4 months. The point is that the numbers just indicate that you need to keep doing scans and if scan is ok then stay the course. My onco wants to squeeze as much time from the current drug as possible.
She was on Ibrance 2 years and 9 months . Then when to anfintor and Faslodex but only for like 6 or 7 weeks. Her scans did show mixed results but also the side effects were very hard so I think that may be why she took her off so soon?? Now she’s on Xeloda and scans are schedule for end of Feb. so will have 2 more rounds before scans . Thank you so much the markers are confusing and cause extra concern. Her last oncologist did not do them. So this is all new to us . I would like to squeeze the most of each line also🙏❤️
My oncologist at Moffitt says not to put too much emphasis on tumor markers
The doctor really should not be relying so much on the TM. For some in treatment the pattern of their TM does not always represent what is really happening with their cancer. It should be determined by scans, and then the TM and how one feels are more like additional info
Hi Flower1513, as a mom of two wonderful daughters, my heart goes out to you for your worry and your reaching out for answers and help. Markers are different for each person. I have asked the very same questions you are asking on my own behalf, disbelief and confusion. In short, markers are what I like to call "voodoo". No rhyme or reason and everyone is different. My scans never show my cancer, because lobular breast cancer is very hard to detect when it's in the visceral organs and that is where mine spread from the bones. My markers repeatedly kept going up from a starting low of 68 to almost 600 in a matter of months. Scans kept showing NED and my doctor kept hoping all was fine, but did change my treatments up three times and they kept going up, and we foolishly waited two to 6 months thinking maybe the markers were going up from inflammation, dead cells, etc., but they were going up because my cancer was flourishing. I finally asked for an endoscopy and colonoscopy and there it was, yet scans weren't picking it up. I was off my previous protocol for about 5 weeks before I started Xeloda. Once started Xeloda, my markers dropped by 1/2 within the first month, and kept shooting down from there. My next endoscopy showed healing and remission in my stomach, scans still showed NED (false negative). I have read that some people have their markers go up after a new treatment, and after a month or so they start to go down. I have heard of people's markers never going down and the cancer is truly NED, and for some their markers never show up even when they are at end stage, end of time. Try not to worry so much about the markers, and think of them as a possible signal. It's more important to try to find where the cancer may be growing and keep in mind scans aren't always the answer to finding the "where is it?" I understand how hard it is, as a patient, and I understand how hard it is watching a loved one go through this. Being relentless in seeking the where might it be until all avenues are exhausted is the best answer as far as I can see. Then and only then, can you know the medication is actually working, or not. It takes a world of patience, it's painful to live and painful to watch. Cancer is a hard road but answers can be found. I truly feel like my answer to you may not be the one that is easiest to accept, but from my experience (and it's not everyone's), this is the route. I wish you and your mom the best, I wish you peace and I hope you find your answers quickly.
I'm also lobular. So tricky. My scans are great, but markers have been rising a bit this year. Curious, if you've had the FES PET scan which measures estrogen? It's supposedly good modality for lobular.
Sorry, that cut off short. I have had 4 FES PETS WITH CT. They do show the uptake of ER+ cancer clearly. It is new technology tho. My dr also started doing signatera testing which measures circulating tumor dna in blood. Mine came back as a wonderful 0. Which is great, but hard to know what to rely on.
Do you need to be off aromatase inhibitors for the FES scan? I have not heard of the NES scan.
Hi there, yes, one must be off aromatsse inhibitors and or faslodex for at least six months in order to have an FES scan.
I've been told letrozole is fine, but not tamoxifen or fulverstant.
I accidentally had a FES PET when I was on an oral SERD. That is similar to fulvestrant (a SERD by injection). It was very informative -- no estrogen. I had to have a regular PET right away because I was in a clinical trial. Same result, NEAD, but the FES was reassuring that the med was working to defeat estrogen.
I haven't heard of nes. Same as FES? Different?
I would think it would be better for lobular.
I just had that nes pet scan. My markers elevated but nothing showed up!! I am Dam ninja where are you hiding...I go to Boston Dana Farber and the nes scan is really one of the best scans you can have!
I have had two FES scans, both NED followed by endoscopies which showed prevalent metastasis on view and biopsies. Yes, FES scans are best for lobular but they also don’t always work, as in my case.
I've heard this so often. Makes me wonder what in the world we ARE to do! I had a colonoscopy recently, but haven't done endoscopy. Did some symptoms lead you to that? Dr kind of told me they don't order that unless something prompts it. I wonder if I should push for it.
I had no symptoms whatsoever! That’s why it took me 2 years to get my doctor to agree to the endoscopy and colonoscopy, all the while my markers were going up monthly ever so slightly. I finally asked her “are we going to wait until I have a serious life threatening blockage or leather bottle syndrome before have a minimally invasive insurance covered procedure to make sure it’s not in my gastro system?” Lobular likes the stomach, it’s lining and gut! So I had the procedure 3 weeks later, and there it was!! Even my gastroenterologist thought it wouldn’t be there, until he got in there and saw for himself. The thing is the gastrointestinal system is a favorite place of lobular and that is just statistical information, I’m not sure why doctors don’t like to look at it.
This is exactly what keeps me up at night. You aren't the first person to tell me this. My whole cancer journey has been full of drs telling me, "you're fine. You've got this. You're the poster girl for beating it. You're the best breast cancer and lowest risk ever." I had less than 1% risk for recurrence. Never had chemo or radiation! Oh my gosh. And then 12 yrs later here it is in my bones. Crazy! I am seeing Dr. Mouabbi at MDAnderson in February and am curious what he will say. He is apparently a lobular expert and his name is on so much lobular research.
Oh my gosh, Gardengirl1345!!! You sound just like me! I was diagnosed stage one – zero at the beginning of 2013. At the time they said they got it all, nothing in my lymph nodes, so no radiation and no chemo and my Onco DX came back, saying that I had a one percent recurrence risk. I was told I had nothing more to do than to take tamoxifen, which, at the time I already knew, was completely inefficient for lobular, and asked to have my ovaries removed and to be put on an aromatase inhibitor.. The doctor I had it that time told me I was being ridiculous and said no. In July 2019, lo and behold much to everybody’s surprise, my bones were riddled with cancer. Here I am today four treatment protocols later., Now on Xeloda, which I was told would not work for lobular, because “chemo doesn’t work on lobular”, and it has been working very well for one year, but I fear that it won’t be working much longer. I have had discussions with my doctor about treating me as a “lobular patient“ and not a ductal patient. Might as well be treating me for liver cancer if I’m going to be treated as a ductal patient. She agreed, saying that medicine has no idea really about lobular. It stresses me out so much to even think about it! I’m lucky I have a background in microbiology, and have been able to push with my own treatments with my own research and my doctor now is very receptive to my research. But the science is very limited with people like us and the medicines just start out there for us. It’s disheartening.
Yes, I think I saw your story awhile back and started following you because everything resonated. Same story. 2011 first ILC and then recurrence caught in 2021. Not officially dx MBC until Feb 2022 tho because original oncologist kept saying I was fine. He'd scan me with bone scan and pet scan and nothing showed up. "All clear!" But I wasn't! Only a random ct scan found bone Mets which we finally biopsied because I changed drs! They STILL didn't believe it was MBC. I had no symptoms. Except after 10 yrs of tamoxifen I stopped it and then one month later started to bleed vaginally. That's what finally led to this. If I hadn't PUSHED I probably still wouldn't know I had it. I am in my mid 50s, healthy, active life.... 5 kids... new grand baby ... uugh. This has been such a crazy journey.
So many of us lobular patients share such similar experiences! I keep asking myself, why does the medical oncology community generally discount us, our lives, so much?! Medicines for us need to be explored more extensively.
I agree. But I do feel like more is at least starting to be explored with lobular. That is encouraging. I will be interested in what I learn from Dr. Mouabbi .
Please share any new information and or novel ideas that you come across with Dr. Mouabbi, or anywhere else as well. It's great that we can all share information and our stories, it helps to not only uplift our community, it also saves lives!! Take good care, I'm wishing you all the best!
Good for you making a stand for yourself! It's pretty amazing how there are too many times that commonsense logic seems to be missing from our doctor's thought processes!
Whole heartedly agreed!!!
hello dear, I have lobular with xeloda working well at the moment or so I think because all is very see thru as we all know. But once you SEE it with endoscopy what is done? Then you know but what comes next?
Next line of treatment comes next, followed closely by markers and a follow up endoscopy every six months. So far it’s been a good protocol for watching if the new treatment is working. It’s actually a better watch guard than scans since it’s in real time, actual view, and biopsy. No fun though for sure. At least I really like and trust my doctors and my gastroenterologist has been my doctor for 13 years now. These things do give me a sense of peace. Damned disease, life feels so abnormal in every sense because of it.
Treated for 13 years by gastro? Lobular for 13 years? Thst seems hopeful… or diss you have other issues that your gastro followed and then discovered Lobular?
Routine endo/colonoscopy by gastro starting in 2012. Just routine stuff, all good until lobular showed up in endo/colonoscopy in September 2022.
I’m doing some advocacy work with Lobular group and lucky enough to have regular visits with Capucine the lovely young researcher at DFCI.
That is wonderful!! Please keep us all in the loop of anything new coming up!!
Hi Bettybuckets! Great photo. How long is it again that you've been on Xeloda now? I'll be starting it this week. The Afinitor stopped working in less than 5 months. Got any tips for what to expect at the very start? Or if there is any action to take that might help the hand/foot syndrome? If I recall correctly you have had a bit of a hard time with it on your feet? Appreciate any insights
Hello dear, I started one year ago at Xmas… I just posted some ideas for you on your post.. feet can get really sore… I suggested gel socks to keep the cream on your feet BUT just read that cotton socks are best… which makes sense. The help could trap heat . My mistake and I will switch tonight to cotton socks.
I saw your other posts answering me. Thank you so much!
Amen ‼️
My tumour marker, the only time I asked for it to be checked, was 19. Normal is up to 35 for CA15.3. I spoke to my oncologist and she said she doesn’t find breast cancer markers to be reliable but ovarian cancer markers she does. My mets are bone only and they’re from my head to my toe and I’m not NED. A friend who has since passed away did find the markers were reliable but sadly her cancer went from HER+ to ER+ but weren’t strongly respondent to treatments aimed at either subtype. Mine is 100% ER+ and 80% PR+ so very little doubt that it’s hormone driven.
I was on Afinitor and Exemestane for 10 months and I had to stop Afinitor because of side effects. I’ve been on Exemestane alone since April 2017. My cancer is considered stable but it’s still active. One scan the right hip lights up but next time it’s the left hip or maybe somewhere else lights up. I’m staying on Exemestane as long as mets are only in my bones.
If your mother couldn’t cope with the side effects which can be hard to deal with then changing treatment or reducing it is always an option. Afinitor has a reasonably high drop out rate according to my oncologist,. She warned me of that before I started and I became anorexic and lost about 30kgs in the ten months. I stopped because of liver inflammation which is a rare side effect
I agree with those who suggest you rely less on tumour markers and more on scans because scans are the most reliable source of information (notwithstanding the fact that Lobular bc is a different beast). The previous doctor didn’t use them because they’re not universally used simply because so many people react differently. Tumour markers can rise even if you don’t have breast cancer. And those who do rely upon them say that the trend is important. If you have three blood tests with a thirty percent rise in the tumour marker values each time, you might have a problem. A CT scan (or a PET scan) will confirm it in that case.
You’re doing good job for your mum. Having someone who can and will help carry some of the burden is a real godsend. We all appreciate having someone like that in our lives.
All the best
Kerry
Hi flower, My cancer markers went up and my doctor refuses to treat a number because many things can cause markers to go up! She sent me right off for a pet scan. They could not see any metastasis so it was microscopic...they haven't changed my treatment and cat scans end of February...They really should have confirmed her marker increase by pet scan right away.They don't even know what they are treating.Where is Hee care?
Blessings
Roxanne
Her scans are at the end of Feb. Right now she is just being treated at a local oncologist. But we are two hours away from Duke. So we will be gettting a second opinion there. I think her doctor wanted to get in 4 rounds of xeloda in before her new scan. Her doctor wrote back this morning and said markers could be lagging because of the month off her meds and hopefully her scans are good.
yes I see you left but really markers were 356 and it’s working. I was too quick to leave ibrance where it rose just a little. As I said when the cells shed tumor markers go up. Affinitor was bad for me but six weeks not long enough to know. Give it time to work my onc is happy with results bec it went down from 1700 .
I know some oncologists take more note of scan and don't worry about markers. Having said that mine started at 435 and went down with Pablo and letrozole, then rose for about 18 months before they put me on Fulvestrant. Now they're going down again. I don't think it's a simple relationship. Best to get expert advice.
Good luck.
Carolyn
SMH at "she's feeling really good," I don't understand these oncologists that say that and that "you are looking good," as if like cancer isn't silent but deadly. It can progress without any symptoms or pain. And my cancer would not have been found on a simple mammogram. It would have needed a bilateral ultrasound along with a CT scan (which is how my cancer was found in ER for something totally unrelated) which is not a standard for a yearly checkup. I believe scans is where it's at instead of relying on tumor markers. It's just so variable. I applaud you for being such a wonderful advocate for your mom. My son is like that.
I was on Xeloda for a year with some minor side effects. Now on Orserdu (Elacestrant) and feeling great but tumor markers keep rising. Doc said I may be feeling great because I no longer have the side effects of the prior meds not because of cancer improvement. ( great huh?) My scans moving me from one med to the next were inconcluusive but a "Circulating Tumor Cell" blood test revealed a mutation. I would recommend you speak to your Dr. about this test. I believe it is done by Guardiant.
How much was the guardiant test if you don’t mind me asking. I’m thinking insurance must not cover it?
I am so sorry, just seeing this now. Honestly I dont know. The first time I had it, but the medical facility took care of it and I did not pay. My last test was covered.
Tumor markers trending up
Follow up about tumor markers
Getting Xeloda delivered Wednesday
