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OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
How much did your CA-125 go down after chemo 1?
Some distressing comments made today by my oncologist's nurse upset me. I got my blood work back - all red and white counts were very good but today during Chemo #2 they gave me the CA-125 test result taken after Chemo #1- only decreased by 12% after treatment one. I realized I had been given no parameters to interpret this or what they were hoping for/expecting to see if Carbo and Taxel were working. I asked the chemo nurse who told me to ask Stacy, my onc's nurse. She said, "Yes, I spoke to Dr L about it last night" (indicating it's not a normal/good result or why bring it up especially?) She said, 'Dr. L said we'd monitor the next 1 or 2 results.' But there was something in her voice that was guarded - like my result wasn't good news. I asked, 'Does this small change mean it's not really working?' Instead of answering my question (Yes, no, maybe, we don't know) she actually said, "This is the only treatment! We will monitor it." I was upset and teary upon hearing this. I cannot believe that this combination of 2 drugs is ALL they can offer me. I've heard of people switching drugs all the time - or going to older drugs if the tumors are Platinum-resistant. Also, I'm still waiting for my genetic testing which may provide clarity on how to treat MY tumors more productively. The chemo nurse saw I was distressed and she asked why and I told her. She agreed with me, that Stacy should never have said that - yanking away hope like that.
Do you remember how much your CA-125 went down after treatment 1? And after that? I tried to find parameters online - nothing really came up, but one site said a 50% reduction after chemo 1 is good news. Did anyone have a CA-125 result like mine and then went on to better results? If this result is poor, it makes me feel their 'iffy' diagnosis of high grade serous cancer may be wrong - it could be low grade and less responsive to chemo.
Do you remember how much your CA-125 went down after treatment 1? And after that? I tried to find parameters online - nothing really came up, but one site said a 50% reduction after chemo 1 is good news. Did anyone have a CA-125 result like mine and then went on to better results? If this result is poor, it makes me feel their 'iffy' diagnosis of high grade serous cancer may be wrong - it could be low grade and less responsive to chemo.
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@BellaDonna1959 you'll find from the voices here no consistency in the answers to your questions. The CA scores are not hard wired. The test itself is at best only an marker but has no reliability for accuracy. As an example, when I was first diagnosed in 2017 my CA was in the 900 range, with one tumor the size of a large grapefruit and several smaller ones on my other ovary and scattered with in my peritoneum. But the CA for my last recurrence 5 months ago was 7500, yet the two tumors that they monitor are only millimeters in size. What they look to to estimate the efficacy of your chemo is the trend, not the score. If it's consistently going down, no matter how much, it's an indicator the chemo is working. Definitively, it's the scans that really provide a more accurate picture. Trying to rely on a CA score after only one treatment is dangerous for your emotional health. The efficacy of your treatment only increases over time. That's why you're generally told how many cycles to expect...usually six in primary treatment, either all following surgery or split pre and post surgery but everyone is different so you can't rely on that other than as a general benchmark.
As for platinum resistance, it's generally assessed based on the success of your first line treatment. If your CA scores trend up, and your scans show progression while on treatment, or within six months of treatment then there is cause to consider you may be platinum resistant and another line of treatment may be more appropriate. But it's way too early, and especially with your first CA showing a decline, to even think about resistance or any change to the treatment you're receiving.
I'm not sure what 'sites' you're using to research your treatment but please be careful There are many out there that are unreliable in the accuracy of the information they provide. And definitely there is not one answer that reflects what expectations should be for everyone. I am so sorry your nurse responded to your questions the way she did. Your CA score should have been very hopeful information and if the chemo is working you should be seeing ongoing trending in the right direction. . That said, you may also find blips from time to time. The CA125 is not just reactive to cancerous tumors, it will react to other abdominal inflammatory conditions. Don't panic, stay with your treatment and assess over time and the bigger picture. The treatment you are receiving is a practice standard for those of us with High Grade Serous OVC and generally very effective.1 -
Thanks for the info - I appreciate it. They 'think' it's high grade, but not definitive. Still waiting for some genetic testing to come back. It makes me a bit nervous. I appreciate the perspective you shared. Rough day yesterday.
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