Who’s interested in a group for Ovarian cancer 60 and over?

I’m 5 months out from frontline 3b,living in the nw. Tried lynparza for 3 weeks 150 mgs, and I couldn’t tolerate the headaches, stinky and unhealthy poops, neuropathy, brain fog, blurry eyes, bone pain….
There’s more, but you get it.
Asked my doctor to do a signatera test, feeling like it’s back. She asked me what would I do if It did show a return? Basically would i do a treatment, she also suggested doxil w avastin,… pretty sure doxil has low success. So more debilitating side effects for maybe a year. Tough choices.
So, open to feedback and suggestions. Trying to keep a positive attitude and live the best life for today.
I feel for you, it sounds great to meet up in person, however another group might be better. Or I’d share how you feel. I have felt there are some groups that shun from sharing anything but positive. Like your story isn’t welcome, i get that they’re wanting to show a face of success.
Take care of you, if you’re not getting what you want there…..

How have you prepared for the worse and what’s been available to assist you. Got a little swelling belly, frequent urine, a few other things make me feel it’s back. Not sure if I can tolerate any more treatments. So, trying to map out all possibilities while I have a clear head. Lol
Exercising what and when I can, enjoying socializing since I’m not on anything. And trying to keep a balance and take care of concerns here. Any input appreciated.
I appreciate your attitude!

jm, exercising and socializing are SO important! Keep it up.
I complained before about how I never had any good news to share. That made it easy to remain pessimistic. So now (ironically?) I finally got some good news. My second course of chemo is finally finished. Got a PET scan to see whether or not it was helpful. On our way to get the results, I warned my husband that if the cancer progressed during the chemo, I would not be eligible for a third course of chemo. I would be referred to hospice. So I was trying to prepare us both for the worst, as well as hoping that the PET scan would at least show a little improvement.
So I was shocked when my oncologist said, “All clear!” No evidence of disease (NED). First good news I’ve heard in two and a half years!
As a medical person, I certainly understand that doesn’t mean I’m cured. But at the very least, it buys me some time.
I can’t exercise due to profound fatigue. But I am trying to socialize as much as I can!

L!Congratulations, I’m so happy for you , that is such great news. So thanx, ill certainly celebrate your good news. Iget it on the fatigue and neuropathy for me, but i push myself as much as I possibly can. Sometimes it’s really paid off, i have gotten stronger and feel better in some ways for sure.
Will you do maintenance? The side effects and chemo brain get old and embarrassing. Not sure what all to do.

I will be on Avastin (bevacizumab) every three weeks for two years. It has fewer side effects than carboplatin and paclitaxel. Most of its side effects have to do with bleeding and clotting. It blocks the growth of new blood vessels, which tumors require in order to grow. It’s not really chemotherapy, so I don’t expect chemo brain. 🤞

@dlainie, that is an incredible timeline. It must've come as a shock to have a recurrence 18 years after your first diagnosis and now again 15 years later. Recurrent ovarian cancer is treatable.

Earlier this month, Mayo Clinic published this article:
- Ovarian cancer: New treatments and research https://cancerblog.mayoclinic.org/2024/05/01/ovarian-cancer-new-treatments-and-research/

What treatment options have been suggested for you at this time? How are you doing?

I’m on Avastin as well. I have been on Avastin alone since last August when chemo ended. In my case, chemo didn’t get rid of all my tumors so I’m on it until for some darn reason the cancer adjusts to it and my tumors start growing again.

Originally, I thought of Avastin as very benign. I guess compared to chemo it is. I really wasn’t sure what side effects to attach to it. Mostly, I’ve had severe fatigue which really affects my ability to do much. I tell people that I have 3 good hours in me each day and then I’m done. I was confused whether the fatigue was the result of a long period of not feeling well and being too inactive. Recently, I’ve learned that it’s probably a side effect of the Avastin.

I was a fairly active person; a gardener, hiker, etc. I had retired and I wanted to work part-time and volunteer work as well. I haven’t figured out how to either of those, although I am able to volunteer at our hospital’s infusion center for a few hours one day a week. Anyway, I’ve had a really hard time accepting the pretty severe fatigue I’m experiencing. Recently, I started attending a women’s cancer group and discovered that I’m not alone on this. Knowing that has allowed me to be more accepting of the situation I’m in.

We are all different and can respond to medications and treatments differently. I don’t know if you will experience a level of fatigue with Avastin that’s frustrating or not. I just wanted to say that if you do, know that it isn’t a personal flaw in you and be kind to yourself.

Just found out today....I'm 68

@barbarawolos Welcome to Mayo Clinic Connect. Did you find out today that you have ovarian cancer? You may have had symptoms but a diagnosis like this is really a shock. You've arrived at a very supportive place where you will receive emotional support and suggestions for how to get through this. I hope you will allow us to help you. I'd like to encourage you with Hope. I think of Hope as optimism in the face of uncertainty. When I was diagnosed with endometrial cancer (in 2019) I found out that I needed to listen to my cancer care team and realize that with ongoing research in cancer there are new developments I knew nothing about.

When do you meet with your oncologist to talk about your treatment plan?

My first appointment at Roswell Park is on Tuesday. This is a shock because I wasn't able to get a doctor to listen to me, they all thought I was just overeating and getting fatter but I knew this huge belly was something else. Finally, someone listened and here I am.