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.
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.