Help! I’m freaking out! I’m on letrezole and ibrance and have been doing well with tumor markers that have steadily dropped into the normal range. I just saw my labs from yesterday and my ca 27 29 is still in the normal range but my ca125 skyrocketed to 298!! My AP (liver enzyme) was also low at 35. Any input would be much appreciated. Thanks
Mandy
I don't have anything to help . I can just say I'm in a waiting time also on weather there is something going on. I'm on Letrozole by its self. I started on Arimadex first by its self Jan 2017-2018. After finding mbc in my right ovary in December 2018 during a total hysterectomy they took me off arimadex and put me on Letrozole. My Ca27-29 have always been in the teens. My other blood stuff was always within the guide lines. I had blood work in October 2020 it showed Ca27-29 as 36. And my Alk Phos. Where 123which is a hair high. So I was sent to have another blood test that would be more specific on where the high enzymes where from. I guess they can be from liver, intestines, uterus,bone etc. Since I had a full hysterectomy we knew that was out. It came back they are liver. All the other blood work stuff that pertains to liver is still in range. I had a blood work done again here in January it has my Ca27-29 @17 again all other things on in guide lines but the Alk Phos was up another 2 points 125 . I just had a Yearly CT scan and a bone scan. Still waiting for those results. Hoping everything is still good and I can continue on just Letrozole as I don't have any side effects from it.
Mine are at 4,500 right now. Hope that makes you feel better. Don't know what's going on. Just had Pet and CT Scan. New mets to liver this year. Just switched up to Xeloda.
I hate the fear/stress that tumor markers bring. My ca 15 3 and ca 27 29 are both normal and she just happened to order the ca 125 by mistake. The ca 125 is 298. I have no reference because that one has never been ordered. But now I’m stressing.. my last scans showed favorable response to ibrance/letrezole. I don’t know what to think.. I’m so sorry you’re dealing with high markers too!
Yep - mine are doubling thats why I switched to Falsodex and now I have to have another PET scan next week - I think I'm headed for XelodaI HATE TUMOR MARKERS
I recently had a similar situation as tumor markers started going up after 20 months of being NED. Doc said no changes in meds until something showed up on PET/CT.
It took 8 months for progression to show up in the lining of my stomach. I have now changed meds from Kisqali and Letrozole to Xeloda.
I've been on Xeloda since November and still trying to find a dosage that doesn't keep me from feeling so sick and tired. I'm taking 2000mgs daily, one week on and one week off now. Markers are going down now from a high of 750 to about 350 now.
This may not be the situation with you and I hope not. My understanding is that most doctors will not make changes in meds based on tumor markers alone.
My best to you,
Audrey
Hi AudreyI also started Xeloda in November and had my initial dose reduced to 2000 mg a day
I’m exhausted and nauseous most of the time but it does vary
I’ve started wearing sea bands all the time and I’m sure they help or placebo effect?
I hate this drug so much...one of the nurses told me that it’s very toxic and not to be fooled by it being in tablet form...it’s still chemo!!
Ugh
Barb
Xx
Hello Barb,
I think we started Xeloda around the same time. I started on 11/11/2020. Unfortunately I was started at 4000mgs per day and that almost did me in. I've tried several different dosages and have finally landed on 2000mgs per day, 1000 after breakfast and 1000 after dinner, one week on then a week off, and that may be the critical balance for me. I have actually felt almost normal the last 5 days so I'm holding my breath and praying that it is still working. I have been nauseated almostthe entire time. Ondansetron twice per day is my friend that keeps me going. ( I had tried the 2000mgs per day back in Dec but the doc insisted that I bump it back up to 2500 and two weeks on and one week off but the tiredness and nausea set in again.)
If I can continue for awhile as I have these last 5 days then I can manage so long as it is working. One thing I did find that help to alleviate the nausea is Synergy Raw Kombucha Gingerade. I was able to find it at my local grocer. I know there has been discussion on the board about kombucha and it may be unsafe if you are making your own and do it improperly. I am not in to making my own anything at this time. All I can say is it really helps me to sip on it occasionally. It is not something that I would normally drink.
Don't you just love the warnings on the Xeloda about not touching the medicine and what you need to do if you mistakenly touch it? Yet we are suppose to just plop it in our mouth and let it ease on down through our insides!!!
Please keep in touch and we will see where this Xeloda journey leads us.
Best,
Audrey
Hi Audrey I must say I didn’t know about not touching Xeloda...how stupid as it goes straight down the hatch!!!... anyway touching it hasn’t done anything as far as I know
I find Pepsi max good fir nausea...I’ve also bought this gadget from Amazon called EmeTerm....a bracelet with a current that works like a tens machine...stimulates the median nerve in the wrist and apparently helps with nausea...I’ve not tried it for long so I can’t recommend but when you’re desperate you try anything
How you even took 4000 mg even for one day amazes me...I read somewhere that once the dose is reduced then it’s in advisable to increase it again...although it didn’t say why but I remember thinking thank goodness I won’t have to suffer that again
Seeing my oncologist later today as I’m concerned about a new lump on my neck...hope it’s nothing
All the best
Barb xx
Hi Audrey,I'm sorry about your move to Xeloda as that must be stressful. Do you have a lobular cancer? My doctor says that the stomach lining cancer is more common than and is worried about that for me. I have it in my bones including ribs...but a pain in the middle not the chest bone...so she suggest some test blowing air in the stomach which will show if that is the problem...cuz the stomach becomes like plastic...Do you mind telling me what where your symptoms and what the test to figure this thing out was like. I hope you are still having mostly good days as am I....grateful for your response!
Beth
Hi Beth,
I have HER2-positive MBC not lobular. From my understanding this is very unusual. I really did not have any unusual symptoms but the progression was discovered on my latest PET/CT scan in October. I have been having them every 3 to 4 months since my diagnosis of MBC in Nov. 2018. I was originally bone only though in many different places. Kisqali allowed me to have 20 months of NED before TM started climbing and the cancer showed up in the lining of my stomach confirmed by a biopsy.
My doc did send a sample to Foundation One and I do have PIK3CA mutation. When the Xeloda quits working then Piqray will be my next line of treatment. I also went to MD Anderson for a second opinion in December and they agreed with my treatment plan and advised that there are at least two more treatments available after Piqray as well as a great number of trials taking place now. The doctors at MD Anderson were very encouraging as to the possibility of many more years for me. They did mention that they have 40 oncologists on staff that concentrate solely on breast cancer. I was amazed at that. I saw Dr. Tripathy who is head of the department for Breast Cancer Oncology.
I have been feeling good for the last five days. Please let me know if I can answer any more questions for you.
My best to you,
Audrey
All I can tell you is that my tumor markers have been way high, with one, that should be 30, at 1700!! Xeloda has brought it down to 1600, but it still seems scary. But my doctor says since my tumors are shrinking (and it did come down a little) we should watch it but not worry too much. I hope this helps!
Thank you for all the replies. Talked to my dr today and she said since my scans were good and the other 2 tumor markers are in the normal range I shouldn’t worry so much about the ca 125. I just find it odd that 2 markers can be normal while another is almost 300..the ups and downs of this disease is so darn stressful!! Hugs to all ❤️
I thought CA125 was indicative of activity in the ovaries? Can you ask for a scan of these? (I don't know how old you are but they can easily be removed if there is any chance of a problem). But please don't be too alarmed. I had high CA125 years ago when I had fibroids. Dropped straight back to normal after my hysterectomy. If the doctor say not to worry then she is the expert. I just felt I ought to mention the ovaries angle as that is usually what that marker is used for. I am so glad for you all the other markers are good - that is terrific. You are obviously doing really, really well x
Yes they typically use that marker for ovarian cancer. But it can be used for breast cancer and she said 20 other things can cause it to rise. It was actually ordered by mistake. We had been only following ca 15 3 and ca 27 29. I had been so excited as those two had fallen into the normal range and then I was hit with the ca125 that was almost 300. So it caught me off guard.. I guess now we will follow the ca 27 29 and the ca125. I actually had my ovaries and Fallopian tubes removed because the ovarian suppression shots were causing all kinds of problems for me. They did find breast ca in my ovaries (that had been undetected on scans). Which is scary as well..it seems like lobular breast ca can hide. So anyways we will now follow the ca125 and I will work hard to get that into the normal range with the other 2. 
I juice/workout hard/take supplements and meditate. Thanks again for all of the responses. We can learn so much from each other! ❤️Mandy
That all sounds good. Good luck with it all. The other tumour markers are the main thing. Take care x
Sorry - I should have looked at your bio first. If you are in your forties, you could easily have harmless fibroids that is pushing this marker up? x
Thank you so much Sandra! Your response made me feel so much better. You are all a wonderful bunch of ladies
Hi my tumor markers ca27-29 was over 2000 last year now down to 199 so think positive i've been on ibrance, paxletaxel , xeloda, adriamyiacin and now doxorubisin it took a long time for the markers to drop so keep the faith
👍
I would like to better understand why sometimes tumor markers are an indication and sometimes you can have breast cancer with no elevation in the markers. Can someone explain?
Hi, As far as breast tumor markers most doctors don't do them . Inflammation can alter them and alot are not accurate..they use them as a tool if they go from normal to thousands they might be alarmed but most of their decisions go on the scans you have..medications, chemo etc can cause some elevated liver functions so let the doctor explain to you before you get alarmed. Ca125 are very often wrong...The cat scans are the tool that tells the most accurate diagnosis..Dont panic yet let the doctor read cat scans . I have been a nurse of 38 years and got these calls all the time because they see their labs and even if in abnormal doesn't mean bad in cancer world but some do..you didn't tell me your liver function .We can do this !!!
Slight increase in tumor marker
Good news on tumor markers
Tumor Markers Trodelvy 
RISE IN TUMOR MARKERS
