Hi everyone,
I am on Xeloda now for 6 months. The Pet CT showed some improvement in bones and liver but showed some obstruction in the ureter and thickness in the endometrium. I am going through additional tests now. In my blood test the tumor markers went up from 50th to 70th Another one from 5 to 7. I am so worried. Did anyone experience tumor markers going up with no progression? Please help. I am so nervous. Thank you very much.
Best,
Marina
My test is called 15-3 cancer antigen and a CEA , on the CEA normal is under 2.5 for non smokers and under 5 for smokers . You said yours was 5 all along ? Do you smoke ? If so going from a 5 to a seven if you are smoking more then usual could be the reason , If you don’t smoke which I don’t think you do I still would wait to get that test retested I’ve had to have that retested in the past.
I am a non-smoker. The CEA went from 5 to 7 but another 15~3 went from 50th to 70th. The nurse said it ma be the inflammation. Thanks you Stacy for all your support. Best,
Marina
Thanks my friend , we all become sisters stronger then birth siblings . This cancer binds us together for life . I plan that you and I will be here to see the cure . 🌹❤️Much love to you 🥰
Hi Stacy. Very good comment. Thanks for your nice words. I hope the same. Best
Hi Cureforever,
Over the course of my disease, I've been a bit obsessive about my TM's, getting nervous when they would spike, e.g. an increase of like 10% or more....But what I've learned over time is that they can increase, slowly, for a long time without there being anything close to a proportionate worsening of the actual cancer....
...for me, big picture, the markers have increased from like mid 40's for CA15/23 aka 27/29 to...above 300? And my CEA has increased from like 4 to...high 30's, maybe 40? Over the course of seven years....
Has my cancer gotten worse? A little bit...Did the spikes occur at the same time as mild bouts of progression? Often, but not always....
So, now that I look at the numbers I typed above, I guess you could say that my TM's have increased seven-fold or so but my cancer has gotten only a little bit worse?
I have a couple of wackadoodle theories about how this possibly makes sense...which I'll refrain from sharing (!)...but I will say that, for some of us, myself included, they can be indicative, directional but not conclusive....I think the key is to get a sense over time of how your markers correlate to your disease...I do think it varies greatly by individual...
p.s. I still obsess! 
Take care,
Lynn
Hi Lynn. Thank you for your reply and for sharing. It’s encouraging that your cancer was not correlating with tm much. I wish you the best. Marina
Tumor markers are not good indicators of cancer progression. My onc. hasn't done marker blood test on me in 3 years. They can go up or down for many reasons. Pay attention to your scans; they're what's important.
Hi,Thank you so much. The scan showed improvement in bones and liver but also revealed some problems with the thickened endometrium and blockage in ureter. This is why I was nervous about tm
Best,
Marina
Hi you 🌹 so that is how they found my metastatic cancer was from the tumor markers . I went in the pool three years after I was finished with my chemotherapy for my stage two cancer and I was doing well. I did a leg lift on the stairs in the pool and I pulled my rib cage so bad that I was hunched over got out of the pool the best I could came upstairs to my condo and for the next four days I suffered in horrible pain. It was time for Dr Melo and my regular appointment, so I told him about the rib pain and he ran the 15–3 cancer antigen and the CEA markers and sure enough it came back in the high 50s and the CEA 3.5 but I smoked at the time 😩 and for a smoker under 5 is normal . that’s when he sent me for full body pet scan and that’s when I get the horrible news that my cancer has spread to the ribs and now I was stage four. But all along my stage two cancer was grade 3 which is the worst. They always felt I was going to spread because of that and sure enough I did.
Hi Stacy,Thank you for sharing. What they told me this time that tumor markers may go up due to inflammation as well.
Best,
Marina
Hi Stacy. What are your tumor markers now with NED. How did they fluctuate through out your mbc treatment? Mine were 50th last month not 70th and cea went from 5 to 7. But the nurse said that it may also be due to inflammation. Best
The highest they ever were were 59 that was the CA 15–3 that’s when I was told it was metastatic. Then it went down and down and down through the years and went all the way down to 6 but when my pet scan came out clear five weeks ago it was 14, I’m having it done tomorrow. I’m very curious to see what it’s going to be and if it went up. I don’t know why but I feel scared. I go by those numbers, they always stayed true for me. I think under 32 is normal. For that test, the CEA I’m usually about 3.5 and that really never changes. I’ll let you know after tomorrow, usually takes two days for the results. X ex oh well hang in there
Thanks Stacy for sharing. Mine were never normal but I always had Mets. You are Ned. It’s understandable. I would be happy to be stable. Tumor markers are always a stress for me but they fluctuate all the time. They recently went down but now they are up again. What cancer center are you going to? Good luck for tomorrow.
I go to a hematologist/oncologist named Dr Jose Melo here in Plantation Florida 33324
I think the comment about looking at the scans is spot on. Besides my own MBC I have been on a rollercoaster with my father's prostate for 10 years and it usually always comes down to the scans. Best wishes Claire
Hi Claire,Thank you I just had a scan that showed improvement in bones and liver but revealed a few problems with blockage in ureter and thickened endometrium. This is why I was concerned about tm. Going through additional tests and doctors visits.
Best,
Marina
Hi Marina- what will happen if the ureter gets blocked? Surgery?
I am not sure. I have to get two more tests.
I was told a long time ago to ignore tumour markers. So I do.
Cheers, June S.
Hi June Thank you. Maybe it’s smart. They cause a lot of stress. Best,
Marina
I have never been told my tumour markers so saves me worrying about them x
Hi. This is a lot less worrying I am shaking every blood testBest,
Marina
My team never worries abt tumor markers. Have you had any shots recently? Covid booster, etc.
Hi. No , I did not have them recently. Thanks for your reply. Best,
Marina
would you believe that my tumor markers remain normal....always have been since diagnosis! never elevated. weird but true. tumor markers, for me, are meaningless. xo
Hi,It’s interesting I worry every blood test. For you it’s less worry.
Thanks for sharing
Best,
Marina
hi Marina. it is strange indeed. but just goes to show how we are all different, despite the same diagnosis. and i don't worry too much about scans either. not sure why. i mostly worry about my bent and twisted spine and it's progressing collapse. i can barely walk at present and the pain is intense. i would love to travel but that ship has sailed for me. i am mostly housebound. so i guess most of my 'worry' gets used up on that. at some point i will not be able to walk at all....just not sure when? that is my worry.
good luck with your ureter blockage....hope they can determine the cause!
carole xo
Sorry to hear your unable to do things now because of all the pain and problems with your spine. Must be so difficult for you. Hoping you are still able to get some enjoyment from life despite all this🥰💜xx
hi Corrina97. i adore my grandsons....ages 13, 2, and 5 months. they bring me Joy! thanks for the concern. hope you are doing as well as you can!
hugs....
carole xo
Hi Carole,I am sorry for your pain and difficulty to walk. I am not a doctor but I believe that you may want to get consulted with the surgeon. The lady I know got a spine surgery and her pain was gone. Also I heard that if a person is in pain the radiation helps. You may need additional consultation. I do not know where you live but that lady had a very successful spine surgery in Columbia Prespetarion hospital in New York City.
Good luck
Marina
hi Marina. thanks for your reply! i have been dealing with the collapse for 2 years now. i was under the care of two spine specialists up until recently. over these past two years i have received radiation twice, had a posterior laminectomy surgery to L3 for severe stenosis, many steroid injections to facet joints in vertebrae, RAF (radio frequency ablation) to nerves in T12, L1 and L2, physical therapy, custom made brace that hurt more than helped...blah blah. each time i was optimistic for relief but each time disappointed. my spine has a 47 degree curve to the left....considered to be in the severe category.....and also has a severe rotation. my spine is a total mess and not everything is 'fixable'. spine surgeon said i was not a surgical candidate for 'straightening/fusion'....way too much hardware (rods and screws) for my fragile spine that has lots of mets. he feels it would 'crumble'. and honestly, that type of drastic surgery is a crap shoot as to whether it is even successful and the recovery is long and difficult.
emotionally, i am at a point where it is probably better to 'accept' as opposed to putting myself through more painful procedures, only to be disappointed at the poor outcome. my surgeon has signed off on me stating nothing more he can do....
i appreciate your concern....carole xo
I am so sorry Carol for all your pains and suffering. But I assume that your spine condition is not cancer related. People are saying that bone Mets are rarely causing pain and that it can be fixed with radiation. I hope some new drugs like ErSO will come out soon that will cure us. Best regards and virtual hugs.
Marina
hi Marina. of course my spine condition is absolutely related to the mets. i have some degenerative changes superimposed over the many mets. and i do not know where you have heard that bone mets rarely cause pain??? they can be extremely painful. that is how i was diagnosed with mbc....from PAIN in my lower spine and pelvis from bone mets. i never would have sought out medical help if i was not in pain. and radiation does NOT always work. and i have too many to radiate all. too much radiation anti productive to the cause....will destroy the bone along with the mets. i just responded to another woman with the same issues as me...bent and twisted spine and in wheelchair. and hers from the bone mets as well. not sure where you came up with this theory?? ouch. very insulting to me. do you have bone mets? i really want to know....carole
I am sorry Carol if I insulted you. I did not mean that. Not in any case. I got that theory from women here on board that have bone Mets Many of them were not complaining about pain. This is where I got it from. I am sorry again. I hope the scientists will find cure soon. I got letters from scientists that developed ErSO and they were very optimistic. It supposed to be a cure if this compound goes to trials and will be successful. I have lots of problems and just would like to think that some of them are not cancer related. I asked you because your markers were normal. I thought that you have some non cancer related issues. Sorry again.
Best
hi Marina. thanks for that. and i apologize for going 'off' on you. was frustrated to feel discounted as mbc has changed my life entirely....and not for the better. we are all different and our presentations are all different and so is how we respond to the meds. one size does not fit all.
i also have mets to my scalp (yes, they hurt) and to my sternum and L rib and left iliac ...in addition to my spine. in my spine, i have mets to L1, L2, L3, L5, T12, T9 and one cervical. my lumbar spine has been radiated twice now and according to my oncologist, two times to the same region is the max or you can risk destroying the bone itself and not just the mets. but the radiation did not work for me. like i said, we all respond differently to treatment. i also have new spread to nine supraclavicular lymph nodes in my L side of neck. for that reason, i will be switching from letrozole (4.5 years) to Faslodex injections. in fact, my first injection will be tomorrow!
i do not know why my tumor markers remain normal but they have been since my primary diagnosis, having diffuse cancer throughout my R breast and several lymph nodes....combo of ductal and lobular. rest assured that i certainly do have mbc. my oncologist does not pay attention to tumor markers at all, saying that for many they are meaningless....and that rings true for me. she goes by my scans and that is what we follow.
ErSO sounds promising.....but realistically, still has a long way to go. i am not holding my breath😉.
once again, i'm sorry for over-reacting.....
carole
Hi Carol, I understand your reaction but I felt very bad. Good luck with your injection. I had them for 6 months with no side effects until they stopped working. I am going to the hospital for bloodwork. My hemoglobin is too low and they want me to have an infection. I understand your feelings. I hate this disease. It also change my whole life. I have no joy of life anymore. I live from test to test and from one pet ct to another. I am in constant anxiety. I wake up with anxiety and go to bed with it. I just hope for cure and better life. The scientists are very close. Best wishes to you.
Marina
hi again Marina. if you are interested to know more about bone mets and how they can cause spinal dysfunction....read the post/replies from TheDrivenSnow who posted under the subject 'EF effect on Herceptin' which was originally posted 6 days ago. she has a few posts in the lower half of the replies. hope you do read it as she explains much better than me! carole xo
Hi Marina- we are similar… (might have liver involvement… I had a car crash and that CT Said yes but onc not sure) and onc worried about thickening on ureter snd endometrium. So switching from Ibrance and almost picked xloda which will be up next… but decided to try the other CDK4-6 before changing drug class. My markers were up slightly but my bones all stable. Just a Lymph node in neck growing. Let me know how you get on and I wish you luck. My Dr told me he has pats doing well for years in xloda.
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