Ovarian Cancer: Should I go on Maintenance Therapy?

@juliea55 Thank you for your well-written comment. June 5th I have my next 3 month follow-up appointment. At that time, if I remain NED, I've decided I will request the Avastin.

@charli7 I am 70. Everyone has to do what feels right for them, but with risk sometimes comes reward. I was also reluctant to take Avastin alone, but one of my mentors said with this disease you need to be brave. Weirdly I felt better combining Avastin with something else, which I thought might make it more effective. I started out positive, but for now I am negative for even microscopic disease. My only real side effects have been fatigue and some manageable raised blood pressure. There are no future guarantees and yes, I could have toxic side effects. I hope I will be one of the lucky ones and do my best to guard against that. No one wants to take unnecessary risks, but you and I are well aware of the long-term odds against us. In my case, I simply decided the risk of progression outweighed the risk of trying some of these drugs. Hugs!

My Oncologist felt the 3+ months of PFD that you get is not worth the risks of the drug...TIA/stroke, cardiac complications i.e.enlarged heart, loss of kidney function and bowel perforations. I don't know if my age at 75 was a reason, as well, although, I'm very healthy.

@charli7 I was stage 3c hgsc primary peritoneal cancer, a relative of ovarian and epithelial cancer. Like you, I have no positive genetic markers that help with treatment, but do not despair. More treatments and therapies are coming online for us each day in the event of relapse. One recently approved by the FDA involves a combination of Avastin, Keytruda and low-dose cyclophosphamide. I have been on this regimen for nearly a year with no significant side effects and very good success. I originally said I wouldn’t consider something like Avastin if it would only buy me a few months. But I have reconsidered and now I think that may buy me time until an effective treatment becomes available. Moreover, you need to remember that the numbers thrown out are just averages and some people do significantly better than average. So I am willing to try these things and see if they work. As one of my nieces said to me, “If they work for some people, why can’t it be you?” Do your best to manage your stress, whatever that takes, and live your life. Hopefully, we will both benefit from the many treatments in the pipeline.

@charli7
I had mvasi (avastin) every 3 weeks for a year. I'm interested in your oncologist's opinion why Avastin is risky. Can you share.

@charli7 Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. While we wait for others to respond I'd like to share my thoughts and feelings about being constantly worried.

If you choose to read through other Discussions in our support group you will see that many of us (dare I say most of us) have that state of worry that you mention. My diagnosis of endometrial cancer was in 2019 and then a recurrence in 2021. It took me awhile to address those worries, observe them, and see them less often as time went on. I still worry and I accept that my worry may never completely go away. I'm still going to follow-up surveillance appointments every 6 months and it's shortly before and during those times that my anxiety increases. What will be found? What will the CT show? Why can't I live day-to-day and enjoy my life just as you note.

The diagnosis of Stage 3c high grade serous epithelial and the genetic markers that are not treatable is something you likely never thought about prior to your diagnosis? I know I didn't think about a cancer diagnosis prior to my own. We now are in the midst of adjusting our thoughts and views of ourselves. How do we do this? I pulled out the coping skills I've developed over the years to get through periods of anxiety and depression. These include going for walks, going to the gym, wandering around my favorite places to look at birds, breathing practices, looking at the sky and trees while I did the breathing exercises. These work for a little while and then if the worry pops back I do it all again.

Do you have a therapist you work with? If no, would you like to ask your oncologist for a referral to a therapist, usually a social worker, in the oncology department who you can talk with?

I have Stage 3c high grade serous epithelial ....completed the Frontline treatment - completed Nov 5 '25. I do have positive genetic markers like BRIP1 ..however, no markers that are treatable. Thus I'm not eligible for maintenance therapy. My first 3 month follow-up March 1 had normal CA125 and HE4. My next follow-up is June 4th. Are there any longterm survivors who did not receive maintenance therapy? I should be enjoying my life but I'm constantly worried. I did ask my Onc about Avastin....he does not like it. He feels too many risks involved.

Hi Denise. Thank you for sharing. I have also looked to what I can control in this journey and changed my diet and exercise, but I still have room to grow. However, I have learned a great deal about ultra-processed foods and their impact on chronic health issues, and I am overwhelmed by the negative impact it has had on our culture. And for the most part, I, as well as many others, have been oblivious to the reality of the situation. I know it is difficult to make the change, as I am a chocoholic and have always loved sweets! But I agree, it is the lesser evil in this case. I, too, have experienced irregular heart rhythms, and I am scheduled for an echo myself. I wish you the very best as you move forward. Thank you again.

I understand having competing health issues. I have Crohn's Disease and I'm being treated for a rare aggressive uterine cancer.

But cancer trumps Crohn's in my opinion. My maintenance drug can cause heart failure. I'm receiving what will be maintenance drug with my chemotherapy regimen already. We see from the echocardiogram that there has hee negative impact on my heart, (I didn't have heart issues going into this. )

I want to live. Bottom line is I'm going to try everything that has some science behind it to live. I decided I am going to add a cardiologist to my team to monitor my heart as I receive the treatments.

I also discovered that food choices can impact high blood pressure and Autoimmune diseases. I first worked with a dietitian to learn how to eat for health then I turned to a Functional Doctor to help me regain my health. Almost all his treatments address diet. It's a difficult transition to go from being someone who only knew the Standard American diet to a whole food plant based diet.
For me it's worth risking my heart health to survive cancer, but I'm going into it knowing the risk and I'm trying to initigate him as much as possible

Thank you so much for your thoughtful response. I appreciate all of your helpful suggestions. I wish you all the best as you continue on your journey!