Rise in CA125; recurrence

Hi everyone. Looking for your personal experience of CA125 monitoring. How did you deal with it, personally? What did your doctors (oncologists, family physician, etc.) say to you about the subject?

A month from now I have a regularly scheduled meeting in person with my oncologist. But after my blood test this week I placed a call with their office to see what they thought about the latest CA125 count. (I will share here below a few details about my treatments, knowing that there might be a few keyword searches that will lead here, to this discussion, and thus that my own personal experience might help others going through something similar - or be of benefit to others by demonstrating the variety of directions that treatment can take).

In July 2021 I was diagnosed with high grade serous carcinoma and treated immediately for a pleural effusion. I know that statistically a pleural effusion is about as bad as it can get when it comes to outcomes (of course: "I am not a statistic", and I am an athlete who is very fit, eat well, meditate, etc. etc.). Last December I finished first line treatment (carboplatin/paclitaxel and total hysterectomy); and I started on a maintenance treatment/targeted therapy of niraparib in late February. In January my CA125 was 7.5, and since then the number has been increasing gradually into the teens and twenties, a couple of points every month. However, this week the blood test result showed that the number rose from 23 to 34. I know that this is still too low a number for my oncologist to initiate a change in treatment, as the rise in number could be due to any number of factors unrelated to ovarian cancer; and anyway, if the CA125 is an indication of cancer growth, the amount of tumor present right now is not likely to show up on a CT scan.

Furthermore, there is not much benefit from rushing into taking more chemotherapy since it is an ineffective form of treatment ultimately because of a cancer cell's ability to mutate. The oncologist told me that they would consider making changes when the number shoots above 50 (which is a standard approach). My understanding is that given the paucity of treatment options for this cancer, holding off as long as possible on another few rounds of chemotherapy is better. Furthermore, my oncologist told me that there was not necessarily any point in increasing the dose of niraparib since there is not much difference in outcome between people taking 100mg niraparib daily, like myself, and those on the higher daily dose of 200mg (I started on 200mg, but after seeing problems with my chemistry the oncologist reduced the dose).

So, I am curious to know at what point people made changes to their treatment: were changes made because of the CA125? Or did you wait until you developed a tumor that could be seen in a CT scan; or until you had symptoms such as pain, or bloating, or a pleural effusion? How did the conversation about treatment go with your oncologist?


  • StrongwomanStrongwoman Peer Support Vol
      Welcome and I am saddened to hear you have to go through this.  I will let the other HGSC ladies weigh in on what you posted.
      For myself (LGSC), I was deemed NED in Sept 2021 after debulking and chemo last year. In March 2022 my CA125 level was 40 which is only 4 points above the level they want to see it at but was having symptoms.  I had a CT scan which was very vague in comparison to all my other ones and I questioned it.  But....I had to go through the process regardless.  I kept documenting my symptoms and waited until my June testing and appt.  It showed then that my CA 125 level was at 120 and my corresponding CT scan indicated recurrence and hydronephrosis/hydroureter as well.  Since then, my last CA 125 level (just last week) is at 143.  I just had a CT scan today.  
     My LGSC is not acting "normal" and is being aggressive in nature as to why, they are all unsure.  I have been on Letrozole for just over 60 days now and am to be going on Trametinib but have no idea when or even if it will happen.  I have been deemed palliative and am enjoying life.  I have a Palliative care team that come to check on me once a month who are great.  
      As for my conversations with my oncologists, I was aware of everything prior to the appts so was ready and had processed the news already.  I quite bluntly asked "what's next and where do we go from here."  I had already done my research as well so that I could make my appt as effective as possible.  So that led the Letrozole.  It took the 5th doctor (who was a palliative doctor) telling me I should end work and live before I actually listened and followed through on that.  For me, I think it was a well.....she is a palliative doctor who doesn't normally see me but sees very ill people....if she is telling me this, I better listen.  But that is me and I have a different type than yours.  
      So, I am positive the other ladies can assist you along with yours that have the same type of diagnosis.
    Keep us posted.
  • @Strongwoman Thank-you for your input. It helps to hear about others having the same emotional roller coaster ride with the CA125 numbers. 

    I remember being shocked when a physician at a supportive cancer care organization mentioned that I was palliative. Other than the pleural effusion and feeling tired (which I attributed to working 6 days a week, commuting for work and still training hard in the pool), I had no other symptoms. Since then I have reduced work to part time, and eliminated the commute by finding a job locally. 

    Spoke to the oncological team later today and they need another CA125 reading a month from now before they can make a decision. I had COVID during the last month when the CA125 rose 11 points, so they need to rule that infection out. It is sobering to read about your numbers. Life sure has its challenges, doesn’t it?!

  • @PaulineJ
    I'm sorry to hear about your distressing situation. It's so hard waiting each month to see what's going on. 
    Up until last week I too was on Niraparib. My ca125 rose in August and again last week. Between some stomach discomfort and a rising ca125 my doctor felt it best to stop the parp and get a ct scan. I understand that everyone's situation is unique. Just a little history: diagnosed in May of 2018 with HGSC followed by surgery and chemo. A recurrence last year with 6 more rounds of chemo that finished in March of this year. I started the parp in mid May. I don't know if this is  helpful, but just thought I would share my experience. 
  • There is little doubt about what we are dealing with, and it is such a hard road to follow! Thank-you so very much for the information. It is very helpful. You are helping me while bravely fighting your own battle.

    By stomach discomfort do you mean bloating? Pain in the abdomen?
    May I ask if you know at what number your doctors said they start to worry, or what your number was when they ordered the CT scan? I realize that at 34, my CA125 number is comparatively low. However, it has been climbing gradually ever since the end of my initial chemo/surgery last fall. My oncologist told me that if the number spiked suddenly to over 50 then she would want to address the issue. But I was listening to an ovarian cancer podcast just recently and that oncologist said they start to pay attention when the number is over 35. Granted, this was in the USA, so any excuse to treat someone helps generate income (sorry if that sounds unkind).

    Best wishes!
  • StrongwomanStrongwoman Peer Support Vol
    @hope2022 @PaulineJ
      From my reading normal CA 125 level is 36.  So, I understand the oncologists point of view of the numbers and what they tell patients.  It is also not a number to be relied upon solely from my reading/information as well.  Continuous climbing numbers, symptoms and any other testing is what they usually go by.  As I said in mine, although my number in March was only 4 points above the norm, I was experiencing symptoms, questioned the CT scan at the time and that was all I could do.  I had to wait out "the process" to go further with it.  
    So, as frustrating as waiting is, sometimes it is all we can do.  In the meantime for anyone out there, document your symptoms as I tend to forget each and every day what happens except for the more memorable ones. Sometimes, some of the things we experience we take as our "norm" but could be indicators for the oncology team.  Like......bowel movements, urinary symptoms/flow, headaches, GI symptoms, cardiac symptoms (shortness of breath, pain), pain levels on a day to day basis.  They can all be small pieces of the puzzle for them.  Some could indicate disease progression to the oncology team. Document your sleep patterns/difficulties too as there are some medications out there that can help with that and may be of benefit to you.
     Food for thought as we all continue our journeys separately but together.
  • @PaulineJ
    I'm happy to hear that my post was helpful. It's difficult to know sometimes when you share your story if it's a good thing or not.
    I have been feeling a little fuller than normal recently, most noticeable around dinner. It was a little too familiar from my symptoms last year. I cut out a few items from my diet this past week and my stomach has been much better. I feel it's a good sign, but not quite sure what to make of it. 

    My ca levels have always been relatively low, even at diagnosis in 2018 it was 40. My cuŕrent oncologist and the one that retired last year have both said that it's concerning when the ca goes up by 10 points from where it settled in at end of chemo treatments. My ca was 7 for about 18 months after first chemo and went up and down for about 8 months. When it got past 20 I had a pet scan that showed 3 tiny spots, too small to measure. When I completed treatment in March this year, ca was at 11 and stayed there until August. It rose by 6 and then again by 5 last week, so just over that magic number of ten. That's just me though. The doctor has always told me it's not so much the number, but the direction it's going in. I know it's not always a good marker for what's going on. 
    Sorry for this long explanation. I hope it all makes sense. The ca125 is so differnt for all of us. 
  • @hope2022 you hit the nail on the head with your last comment.  Yes, the CA125 is so different for all of us.  It can be so confusing for us, as patients, to try to not put so much importance on CA results. An your doctor is right in saying it's not the score but the trending over time they look to.  But there are so many nuances.  I believe we will be having another Symposium this fall, and OCC will continue with their Monthly Speaker series.  I've suggested in past that something be devoted to a solid explanation of the CA with lots of Q&A to address the realities and more so the myths.  There have been recent changes in OCC so I will do this again to ensure those involved in developing those programs don't lose sight of a need we have for more clarity.  

    If it gives you any solace though, when my last recurrence appeared my CA125 had gone from something in the 40's to over 7500 with the trend over the past four months all being upward in increments that were about doubling my score each time.  Yet, when the CT results came in the progression in both areas they monitor was only in the millimetre range and there was no evidence of any new disease.  I learned long ago though not to waste my energy fussing over scores and just leaving my oncologist to make her own determination about what it all means and what we need to do, which is usually one of two options:  do another in 30 days to begin to establish if there is a trend or order a CT since their is an upward trend that means something may possibly be going on and it's time to investigate.   
  • @Fearless_Moderator
    Thanks for sharing your experience about your last recurrence. It's good to know that a rising ca doesn't always mean significant progression. 
    My doctor told me last year that my ca doesn't seem to correlate with pet/ct scans. For myself I know it's the symptoms that guide me a little more as to what is going on. 
    It appears the Niraparib didn't work for me, so I would be platinum resistant, which of course worries me a lot. I am eligible for a clinical trial and my doctor thinks it's the best option for me right now. After the ct I will find out what that is all about when I meet with my doctor. Still waiting for a date for the ct. I hope it's soon if the cancer is growing. 
  • @hope2022 and @Fearless_Moderator You are both so brave! It sounds like you are able to accept your disease and its progression, while focusing on the details that are positive and that give hope. 

    I suspect that niraparib is not working for me either. I read somewhere that we all need to shift the language we use to describe  ourselves from labelling our disease as “resistant” to recognizing that the drug is ineffective in treating our disease  (even if it may have bought us two or three extra months). This puts the onus on the medical system to come up with effective treatments, and gives us permission to demand change.
  • Hi everyone, @Fearless_Moderator, @hope2022,

    On the subject of  CA125, and recurrence, I will let you know that I have now started chemotherapy for a relapse. In the space of a few weeks since my last posting here,  my breathing became more difficult and my CA125 shot up from 34 to 85. I had already requested an x-ray a month earlier because of my lungs. The question was whether the rise in CA125 and trouble breathing while swimming was due to a COVID infection or cancer. Well, last week’s x-ray showed that the malignant pleural effusion was back. So in my case it is the combination of a trend in the CA125 and the symptoms which tipped me off as to the recurrence. 

    This past Tuesday I stopped taking niraparib and started a 6 month chemotherapy treatment of carboplatin and doxorubicin pegylated liposomal (Caelyx). Had an allergic reaction but got through the first treatment eventually. Now that I am a few days into treatment, my main symptoms are fatigue, a little nausea and acute leg pain (which can be treated with Tylenol).

    Hopefully this will give me a few months of stability in the spring.

    All the best,

  • @PaulineJ
    Hi there, back in chemotherapy is a tough place to be. I can certainly relate. The fatigue can be a little frustrating, not being able to do all the the things you like to do. Last year I too was on Caelyx. It caused some mouth sores and severe constipation, which were both manageable. 
    I'm not familiar with a pleural effusion, but hope it doesn't cause you too much distress. 
    I will be starting chemo this week, just carboplatin on it's own. I am just on the cusp of the 6 months, so my doctor wants to try it again, as it worked so well before. The 2 open clinical trials aren't an option right now as they both require a biopsy. The  only tumour large enough to biopsy is not in a safe spot to access. 

    I can only speak for myself, but focusing on just one day at a time has really helped me get through this journey so far. 

    Take care
  • @PaulineJ
    I'm just seeing this thread now but thanks all of you for this discussion. I have some commonalities and and differences that might be helpful.
    Background. In Nov 2021, I was diagnosed Stage 4 HGSC. Previously, I had abdominal bloating and bowel issues for a few weeks started the process to see my family doctor. Around Thanksgiving last year and like you Pauline,  I was swimming lengths and had to stop I was too weak and breathless. I thought I might have COVID. It took a while to see my family physician but she was fast in ordering tests, endoscopies etc but the real delay came in waiting for an x/ray, ultrasound. Anyway by the time I was diagnosed I had ascites throughout my abdomen and like you a pleural effusion. To be honest this was the worst symptom and meant it had metastasized to my lungs, liver  and a lymph node. Frightening as I was not able to breath properly and getting worse. I felt like 'Violet Beauregard' from Willy Wonka's chocolate factory after she eats the blueberry gum. Like I needed a pin to pop me and the pressure was intense in my abdomen and chest. Was diagnosed at emergency after my xrays and ultrasound showed my lung was compressed by 30% and masses in my abdomen. They drained the fluid (thoracentesis) and it offered some relief but not until I started chemo on Dec 3rd did that begin to reduce, thankfully. 

    I had a clean cyto-reduction surgery in March and responded well to 8 rounds of carbo/taxol until July of 22. The lowest they were able to bring my CA-125 was 58 and it started to slowly increase but I still had hope that it would stabilize. I felt great by end of summer and went on Zejula in October 7. There were access problems that delayed my start by 2 weeks.  However now I have another pleural effusion, some constipation, some mild abdominal pain and my CA has jumped to over 3000. Further background. When diagnosed last Nov 20th, my CA-125 was over 22,000. (yes 3 zeros).  A bit of bright news, my oncologist wanted me to stay on Zejula (started at 100 mg now 200 mg) and give it a chance to work as we just started it and although there was increase between the last two CA results the rate of increase had reduced substantially which could be a sign that is at least partially working.  I will be getting a CT scan. I have been getting regular blood work including CA-125.
    It's a bit confusing because many of the symptoms of recurrence, including dyspnea,  (not an effusion but inflammation of the pleural lining), are similar to Zejula adverse affects based on the product monograph which I have poured over multiple times. 
    In the meantime we need to treat the effusion. Along with thoracentesis,  they can put in a chest tube for longer term and there is a procedure pleurodesis, that fuses the lung to the chest wall to prevent further fluid. It's supposed to be effective with not a lot of lasting damage but I have not been able to get my head around how this would work and not have lasting negative impacts.  So I'm hopeful they can address this debilitating symptom and if Zejula is working then they could stabilize peogression. Fingers crossed. 

  • oh no I typed out a long response to add to this discussion but when I made an edit did not save and post. I will try and recompose in the next while. 
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