My tumor marker has went up to 146 from 72 in July .the onc in Houston told me I have to start other meds because they saw progression and he says it’s not working anymore. I currently tak Ibrance and letrozole sinc nov 2018. My question is how much does your onc place importance on your markers.? I told him about an Ibrance holiday and he said change to affinitor and aromasin . It hasn’t progressed to any organ but some new bone lesions . My highest marker was about 175 when I first stared. Any thoughts?
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Tumor markers rising
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Eliactida1955
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Hi, I have been stage iv (lungs and spine) for just about four years now. My onco and the Brooklyn, NY cancer center that is well known do not use tumor markers as an indication of anything. I have mentioned once that I had seen tumor markers on a forum board and how some of the women seem to get upset depending if they were high or low. My onco said they never use them at that cancer center and that it does not mention an indication of anything. So I never asked nor do I care to ask if they do not reflect really reflect anything. I asked one other friend who was tried at another hospital in NYC and she said she was told the same thing.
Thanks for your quick response. I have heard this from others and even the internet says it but also say if it’s rising could be cancer has progressed and my pet shows two areas new one area is larger now. It’s just that went I went there at md Anderson they said no progression then called me two weeks later and told me to come the radiologist had further reviewed the scan . It made me lose trust and he . I have appt didn’t seem to want to spend time to discuss the progression or the meds . I have an appt with my onc here in two days. We will see what he says. What meds are you on? Thank you for your response and wishing the best for you.🙏🌹
I am on Verzenio. I hated Ibrance. My week off was a horror. I could not move out of the bed and was freezing and was under the several covers and my teeth were chattering and it was AUGUST in Brooklyn, I had to shut off the air conditioner. That I only stayed on for three months. Then put on Verzenio, the highest dosage which I stopped myself after two weeks. The diarrhea was severe, did not like the next dose which was 100 I believe. My onco finally gave me the lowest dose which is 50 mg. twice a day. 100% difference. No naps, no feeling sick. I am also on gabapentin 300 mg. three times per day. I am also for pain on 6 20 mg. of percocet per day. I also take xanax (four times a day but I have been on that for over 20 years) and ambien. I also get the falsodex injections every month. Every three months I have a CT scan. So I only see my onco every three months after the CT scan but I get the report within 24 hours now so I can see myself.
I just had a two week radiation to the spine. They made me stop verzenio the week before and the week after and for the two weeks. They seen some spots in my liver the last CT scan but my onco said too small to tell if it is cancer so I have another ct scan scheduled next week.
Unfortunately, I have no family. . I live in a rented apt. in a coop building for the past 25 years. I am sitting here typing and crying bc my LL who lives three floors below me never comes into my apt. It is basically falling apart (A luxury building LOL..pool, 24 hour doorman service.
My LL was supposed to come into my apt. with the Super (He is crazy angry and I did not want him coming in here without her). Sure enough, he just left and he was screaming and me and cursing and me and stuck his finger in my face and I said get that finger out of my face. How dare you. I am done.
I need to get out here but have no family and nobody I know lives in Brooklyn. I have to stay in NY. At this point, I am ready to go into a shelter. Sorry, off topics...but I sitting here shaking. He thinks bc I am a woman and live alone and he knows I have no family that he can scream and curse at me.
I am done......At this point, what is going on with my life outside the cancer, I do not even care. I am sick of people like him and my LL thinking they can take advantage of me. OMG...he was screaming and cursing at me. I told my LL I knew he woudl do this and I did not want to be alone with him. She said she was not feeling well. I said, seriously, I Have stage iv cancer and I am not feeling well either but I have to deal with this bc you do not want to.
I am going to see about the YMCA or something. It is disgusting, but I cant stay here anymore. I am through. Sorry......I am just so crazed.
I can't believe how bad your Ibrance week off is. My Onco keeps saying my body works strange. I have no change in that week vs the other 3. Can't even tell. Now I am going to look at it more closely. I have been on the Ibrance/letrozole/Xgeva plan for about 5 years. I started in March 2016 at 125 mg. Never changed the amount. I am strange. And I had to go off for 8 months for chemo. When I went back on it, it worked at the same dosage. There has been no change to my spinal lesion. My body works strange. I have had 3 cancers and I am still here so I guess strange is ok.
I go on and off this forum board thus my delay in responding. Some women feel better on their off week, some feel the same like you and others feel sick like me. It was not worth it to me to feel that sick. My body never adjusted to the week off.
Hi,How are you now? Please tell me in more details. We’re yiu put on chemo and then back on ibrance. I was on ibrance but it stopped working. I am on my fifth line of treatment Xeloda over 2.5 years. My tumor markers went up and I am very scared. I tolerated ibrance well but I had a progression after one year on it. I would have always wanted to go back on it but had no idea that it’s possible bThsnks
Best,
Marina
I was told that too.
Hello totheriver-what did they tell you?
That my oncologist does not go much by tumour markers either. She only checks them once in awhile
I see well I guess with tumor marker rising and progression from my scan that’s the reason I will change meds but I’m no jumping to do it maybe in January -I’ll know more tomm. I’ll keep everyone informed🌹
For sure. I have regular scans . This month she is doing my tumour marker so I am interested to see what it is . I have no idea what mine is. Hope things go well for you💕
Let us know please.
Hi Eliactida,How are you doing?
My tumor markers jumped from 50th to 70th and I am very nervous. I am on Xeloda now. Another tm jumped from 5 to 7. My pet ct showed improvement in bones and liver but some obstruction in ureter and thickened endometrium. I am very nervous. Please share your experience.
Thank you
Best,
Marina
I go to m d Anderson in a few days and we will see. I am on affinitor and aromas in now and I do lab soon it had only decreased it by 6 points since it had been only a month. When I first started it I had a low pulse but the dr doesn’t think it was the meds. I had a pacemaker inserted on Christmas. I’m trying to hang in there and hope you are better.🌹
Hi Eliactida. I had the same. A low pulse and a pacemaker inserted in January. It started after a booster vaccine. Thanks for sharing. My markers fluctuate much more. They went up from 50th to 70th. But the nurse said that any inflammation may cause that. I am going through many tests and doctor’s visits. Also my hemoglobin is low. 8. The last pet ct while I am on Xeloda showed improvement but revealed some problems with the ureter and thickened endometrium. Hope it’s not related. Good luck to you
Marina
I wish you the best . My booster was in august on the 22th. The low pulse was dec 19th then on 23th I went to the ER hence pacer inserted. I just had the booster again number 4 so I pray nothing happens. I’ll let you know how the pet come out in a few days. Take care and I believe a lot is inflammation that raises the markers . Mine reduced with new meds only 6 points still high.🌹
Thanks a lot for all your support. Good luck with the scan. Keep in touch. Marina
Some info on twitter
Today, we launched the James P. Allison Institute, a research & innovation hub fostering groundbreaking science, develop new treatments and bring the benefits of immunotherapy to all patients: bit.ly/3ww4GVi @JimAllisonPhD @PamSharmaMDPhD @RKalluriMDPhD #EndCancer
This is the link to new treatments in MD Anderson. I contacted that Professor on Twitter. I wonder if he just talks about new treatments or there are some.
Best,
Marina
I am on Ibrance and Letrozole too. I have been on it about 5 years at 125mg. Never decreased but, oh, does it make me tired and thinned my hair. I got Her2 breast cancer in my right breast so i had to stop the Ibrance for my left breast MBC to get chemo for the right. My tumor markers do not increase when I have a tumor. I went a year and a half until the tumor was found in my spine, simply because it was pressing against my spine from around the T10 to L2 and I was in excruciating pain. I had reconstructive surgery to parts of my spine, titanium rod, donor bone cement and tumor removal with some slight nerve damage. So, while this apparently large tumor, was trying to crush my spine, no increase in my markers. My doctors say they don't use them but they tell me every month they look good and I say, remember they don't work for me. It's a little crazy because they were the ones who told me. They are great doctors and they don't miss anything except that so I just keep saying it. 🤷♀️😝Andrea
I am in excruciating pain now bc of my spine. They had me do radiation only bc they said that if they moved into my spinal cord there was a very good chance I would wind up paralyzed. I was told that my pain would intensify bc the radiation would enflame my spine. And it did. I am now on 7 20 mgs. of oxycodone and it is not enough. But my pain doctor in palliative care bumped me up to 30 mg. of oxycodone. Unfortunately, the small pharmacy that I go to (I do not like big chains) and the small pharmacy all my meds except Verzenion which is mailed to me via cvs.
They gave me 30 mg. that small pharmacy and I flipped out. They were not working....I thought it must be imagination but then by third day I was going into withdrawal. I called my pain doctor crying. She called the pharmacy and was able to get me 180 of the 20 mgs. It seemed that the 20s I had been on were from Rhodes Pharmaceuticals but the 30 ms. they gave me was from another manufacturer Mallinckrodt. And then I read some people hate the Rhodes but love the Mallinckrodt and vice-versa. I refused to take them and they did not want them back.
Now Medicare has approved me getting 180 of the 30 mgs. per month but that small pharmacy won't get the Rhodes for me since they have the Mallinckrodt in stock and I guess it is not financially feasible for them to order a new batch for one customer. I doubt they have many requests to get 30 mg. of oxycodone.
I am in tears. Now I have to call my pain doctor. She wants me to go on the fentanyl pain patch and have oxycodone for breakthrough pain but I do not want to go that route right now. I know its going to get worse so I want the big guns when I am desperate but since that pharmacy wont get the Rhodes for me I may have no choice but to do the pain patch and the dilaudid or something like that. Even with stage iv cancer in the spinal cord, they make you feel like you enjoy taking them.
I am so fed up.
From the beginning it has been my deceision and I refused what my onc wanted because I choose Ibrance myself and yes it has worked well. Thanks for your reply and I will see the onc here and talk it over. I talked to a dr about the Ibrance holiday and he said they are working with that so it’s not being done. There are a lot of meds out there so I might try the affinitor and aromasin . I will not do any chemo or radiation so just trying to keep it at bay. I wish you the best🙏🌹
I’ll let you know and most likely will give it a trial run-side effects are bad and with my diabetes it makes it worse. ❤️
I was on Ibrance and letrozole for 5 1/2 years. Tumor markers started going up in July 2020, from 34 to 414 in August 2021. When they started going up, dr said cancer was probably back but we hadn’t found it yet, there was no progression on bone scan or ct. Finally in July 2021 labs were more abnormal than usual. Dr ordered bone marrow biopsy and confirmed cancer had moved there. Switched from Ibrance to Faslodex, labs last week showed tumor markers to be down to 212, hoping that means treatment has started working.
Hi Boogitymom
What a great run you had on ibrance, I started January 2020 and stopped September 2021… onc said it was a good run, but I wasn’t happy!
I was switched to Faslodex and doing well so far.
How do you feel, better now or the same as on ibrance?
Have you had any issues other than the sore injection sites?
N x
I talk to onc tomm the one here in Corpus Christi - I believe Ibrance is working but not as well as tumor marker went from 52 to 146 in a year. Md Anderson wants a med change so I will deceide. I’ll let you know watch for my post-thanks-🙏✝️🌹
My markers have been very accurate until I started Xeloda. But my Onc would never change meds until we have a bone scan and CT or PET to confirm progression.
Hi Lucy,What did you mean when you said your markers were accurate until u started. Xeloda. I be am on my third round of Xeloda , just started. My markers will be taken the day after tomorrow at the time of my appointment. Please share Thank you very much
Best,
Marina
My markers jumped up but my first scans after starting Xeloda showed stable. My markers jumped again this month but I have zero pain in my bones now which I have had previously. Im having both scans again this week due to the markers going up. Im expecting good results. (But I’m an optimist by nature). We’ll see…
Thank you for your reply. Markers are not always accurate. Good luck with your scansMarina
Same with me. Markers aligned with scans for a few years. Now on Xeloda markers keep going up but scans show decreased activity. Frustrating.
Good to know it’s not just me. It’s worrisome every time!
Hi,How are you doing now? Are you still on Xeloda? I am on Xeloda.
My markers went down first now they went up. The scan showed improvement in bones and liver but some problems in ureter (obstruction called hydroureternephrosis) and thickened endometrium. The last blood test showed markers went up from 50th to 70th and. Cea from 5 to 7. I am very nervous. Please share your experience. Thank you so much
Best,
Marina
The same is true for me. My markers have increased each month since January, but I have had two series of scans (CT and Bone) and my scans are stable. Up until now, my tumor markers have been very good indicators of progression for me. I was stable for 5 years on Ibrance. Piqray for six months with progression. Now on Xeloda for almost a year. It is definitely disconcerting to have rising tumor markers each month. Choosing to trust the scans and stay the course.
Hi Lucy. How are you doing now and how are your tumor markers. You mentioned that your tumor markers were accurate until you started Xeloda. I am on Xeloda now and my tm just went up from 55 yo 72. What did you mean when you said this. Please share. Thanks, Best,
Marina
I had no progression for 6 months on Xeloda but my markers kept going up. Ca27-29 101 at start, 193 6 months later. CEA 28 at start, 41 in6 months. For the last five years my markers had remained in the normalish range and jumped when I had progression. Then went down when I was stable again. I now have a 1 cm spot on my lung and I am changing to Afinitor and Aromasin.
Thank you Lucy for your reply and sharing. I understand that for five previous years you were on something else than Xeloda and your markers were going up on Xeloda only with no progression. For how long were you on Xeloda? Where are your Mets? Is the lung spot new? Is this the reason you are changing to afinitor? What were your previous meds over five years. Sorry for so many questions. Good luck to you!Marina
I’ve been on Xeloda since July 2021 until this week. Yes, the lung Spot is new since December. I have had 2 scans since (pet & Ct) to confirm that it is actually new and increased slightly in size from Feb to March. My Mets started In my bones in 2015. I pretty much have mets in my bones from the knees to my head. Since then I have had two spots on my liver and have had radiation on both. I also had radiation for 10 days on my femur/hip due to concern about a potential fracture. I have been on Anastrozole/Zometa, then added Ibrance, rfa of liver, Piqray & faslodex, y90, clinical trial ds050, Xeloda. This since 2015.
I met with my Onc yesterday and and discussed options and chose to do a biopsy so we can retest for any changes in hormones, mutations and then start the aromasin & Afinitor.
Thank you Lucy for sharing your journey. You have gone through a lot. But its good that your oncologist has never put you on IV chemo most of them do. I am scared of this the most. Where do you live? I wish you the best of luck.
I am in Colorado. Iv chemo was an option originally. I just refused to do it when there are other options to try. When I run out of options I may or may not decide to do iv chemo.
I got it. Hopefully more drugs will come out. I read about a new generation of drugs like ibrance. Finally I am following the development of ErSo DFP very closely and the researchers are very optimistic. It cured animals and hopefully will cure people but it’s only on pre clinical phase as of now. Thank you for sharing your journey we all would not want to be on Good luck. Keep in touch.
Marina
I have read about that too. We need new drugs and research .I hope all comes out well👌
I hope the same. Ask in MD Anderson what new options they have now. They are writing me about new treatments all the time. You may ask them when the new generation of drugs like ibrance are coming out I will send you an article
precisiononcologynews.com/d...
Good luck
I go to m d Anderson in a few days. We will see as I will have a pet done and a ultrasound of the left breast. I hurt some on my left side towards back and this is new. How are you doing on affinitor and aromas in? I started it in January and I will see the tumor markers soon. The last marker I had only been on it a month but showed decrease of 6 points. Hang in there!
How are your side effects from the Afinitor/Aromisin combo? I am starting them later this mon5h.
I’ve never had a bone scan just pet and that’s the reason for the change of med new area to bone so we will change I guess need to talk to other onc tomm. Thanks
I have a pet every 6 months but I have friends who have the sam cancer and they have bone scans and ct so I don’t know why they haven’t done a bone scan ever. I will ask the onc tomm but when I was first diagnosed in 2018 I called M D Anderson they didn’t take my insurance but the nurse asked me how do you know it’s in your bones if you never had a bone scan. It’s interesting.
I have sclerotic areas all along spine and pelvis which they say are stable and unchanged. There are a couple of areas lighting up more on proximal femur and new small area in left breast . Yes it’s conflicting because my past scans done here never addressed the breasts for over a year. I find it hard to trust and how the reports are so different. 🌹
Great response!
No physician has ever reviewed the films on anything with me-they don’t spend any time 15 min if all and it appears they don’t like questions either. I can’t read the film but I do read the reports . I have been a nurse many years and no doctors do not take the time. At M D Anderson I was initially told no progression but called back after two weeks to say he reviewed the film with radiologist and said you have progression. Come to my office and we drove from corpus worrying all weekend about it for him to spend ten minutes to tell me the name of drugs to change to. He would not do a tele visit said I had to come up there. If I go there again I will request a new dr. The report conflicting as it is-it’s what I have.
I know this is a delayed response but I am on and off on this forum board. It is the only one I am on. Anyway, I just seen your post and I was thinking the same thing. I have never seen a film of my cancer. I guess I expected it to be like in the movies or TV shows where a person is shown their x-rays. LOL
That being said, I know my onco in Brooklyn, NY is stressed out with the large number of patients she sees in one day. I read an interesting article (I do not remember where but it basically said that most US oncologists are expected to see a different patient every 12 minutes) so I can just imagine the stress it takes on them. My onco look exhausted that day and told me she had already seen 30 patients and it was only like 1:00 pm.
So like everything else, its money-making. After reading that article, I understood better when she seemed to forget what medication I was on, etc.
I am very disappointed with the drs and treatment and it seems the don’t care. This new medicine I started a month ago makes me feel awful. Nauseous and weak. Such an awful taste in my mouth-biter and metallic. It has lowered the marker 6 points but I d k and I’ll talk to him this Wednesday. The meds are affinitor 7.5mg and aromasin 25 mg daily. My platelets went down to 105 never that low . I know it’s the med. past was in sept 133 and recently oct I cut all meds and it went up to over 200 so I know. I hope you are doing ok-hang in there and I’ll try to . 🙏✝️🌹
Maybe your body needs to adjust but if the medication has side effects that is affecting your quality of life, tell them. I used to just stay quiet in the beginning. I was telling my onco after two years (I was diagnosed with stage iv when b. cancer was found in my lungs). Then I started telling my onco that I started have sudden stabbing back pain that basically made me unable to walk even 1/4 of a block without having to lean on a mailbox, building or a lamp-post. She said probably arthritis so I said nothing but it go so bad I could not even leave the house. Even though I was supposed to wait another 3 months for a CT scan, she did it bc I said this is not arthritis.
Of course, they found it in my spine (Boy, did she feel bad). I was taking like 9 of the 800 mg. of ibuprofen she had prescribed me to just numb the pain. She then referred me to palliative care and the pain doctor I have is excellent. I am now on 7 20 mgs. a day and she is going to call me today bc the time in between taking my pills is lessening. The windows is shorter. I am grateful. There is no reason why any of us should be in pain or on a medication that does affects your quality of life.
I hope you find the right med. My onco says to me Well, you are difficult bc you refuse to continue on any med that has side effects and I said that is right. I do not have children or siblings so no one to worry about me but myself.
I hope you speak up. I used to think I expected a onco to remember every little thing about me until I realized how overwhelmed she was with the number of patients she had so I give her a bit more leeway now. Hugs.
I was shocked because not only did I stop for about 8 months to bet chemo and a couple months to recover, it started working when I went back on it. The bad part was that it slowed the growth of my new hair as I was bald when I went back on it. I have about a one eighth of an inch fringe and patchy hair only where i would have bangs to the middle of my head. I lost my hair at just about this time 2 years ago. I finished the Taxol and Carboplatin at the end of January. Still no eyebrows either. I didn't mind all this the first year. Now I just think come on, please. The back and sides are thin but you can't tell so I kind of have a mullet. It's always something. And I hate hats and wigs. I bet so hot. Head bands are my friends for now. I have even thought of going bald again. It was so easy.Andrea
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