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

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.

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.

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!

I who be interested, I’m 70 yrs old and I had been in ovarian cancer remission for almost 3 year. I feel very blessed but I would be interested in anything that would help my remission and not having a recurrence. Thx!

Can I ask about your 2nd treatment?

I have stage 4 ovarian cancer. I’ve went through a first course of chemo and it left me with several tumors. The surgeon who did the cancer debulking had to leave some tumors due to their location. He though that chemo would get rid of them but it didn’t. I’ve been on Avastin for about 10 months now and it’s been keeping the tumors from growing but I’ve been told that I’m lucky. Usually it doesn’t work this long.

My oncology surgeon said that when the tumors start to grow that there are 5 other chemo drugs that can by tried but there’s a much slimmer chance that any of them will work. Can I ask if your second course of chemo was done with new chemo medications?

My first chemo started October 2021. It was carboplatin, paclitaxel, and Avastin (bevacizumab). I also had HIPEC in April 2022. My second chemo started December 2023 and was only carboplatin and paclitaxel. My oncologist felt Avastin was too risky because I had had blood clot in my lung. So my 2nd chemo was less than the first. But the side effects were much worse. They say the side effects are cumulative. The more times you receive each drug, the worse they get.
The first time I went through chemo, I lost my hair and got mild neuropathy in my fingertips and feet. But I was fine otherwise. I was able to go back to work the day after each treatment.
During the second course of chemo, I got severely anemic and neutropenic. I was hospitalized for neutropenic fever. I had two blood transfusions. My neuropathy is worse. And I have debilitating fatigue. I’m still having a hard time even walking down the hall in my house. I’m getting very depressed.
The good news is, my PET scan was “all clear” (!) for the first time in 2 and a half years. I know it doesn’t mean I’m cured, but it’s the first good news I’ve heard since diagnosis.
Going forward, I’m supposed to get Avastin every three weeks for two years. I saw in one of these forums someone said the Avastin maintenance therapy caused her great fatigue…and that just makes me more depressed…then I feel guilty for being depressed after having such good news!
Which chemo drugs you get depends on what kind of ovarian cancer you have. Mine is epithelial carcinoma. It also depends on your response to carboplatin. If the cancer progresses while on carboplatin, your cancer is platinum-resistant, and they choose different drugs for the next round.
How are you feeling? Is long-term Avastin as debilitating as I’ve heard?

Thank you so much for sharing all your information. I live in a rural mountain area and unfortunately, we have significant problems with doctors and medical care here. There are only 2 oncologists here and I’ve tried both and had what I consider pretty big issues. Each time someone tells their cancer story, I feel like they were told all these details about their type of cancer that I wasn’t told at all. I’m going to our nearest city’s cancer center at the end of June and I’m going to ask lots of questions.

I think it’s always a concern to mention side effects because each of us is so different. One of us will have issues while another person won’t at all. But for me, I have quite a bit of fatigue and I’m guessing it’s from the Avastin. I kept telling my oncologist that I felt like I wasn’t getting back on my feet after chemo and I’d get a shoulder shrug. After joining a cancer support group and talking to other people on Avastin, I’m the one associating the fatigue to Avastin. But I am getting better. I couldn’t even stand in my kitchen and do things like make chocolate chip cookies or make a good meal that involves cutting up veggies to stir-fry, but now I’m doing that. I finally got out in my garden to start dealing with the weeds! I can take short walks/hikes as long as there are places to sit and take breaks.

I’m having to learn to be kind to myself. I was a special ed. teacher, gardener, hiker, and a very busy lady. When all of a sudden that comes to a screeching halt, for me “judgements” about myself came into play. I’m working on developing more acceptance of how things are each day, including my too messy house.

It must be so hard to be struggling with the joy of being cancer free but also the huge loss of your general well-being and the issues caused by its treatment. I’m sure you’ve seen Elisabeth Kübler-Ross’s 5 stages of grief. My husband was disabled and used a wheelchair. In the disabled community, they talk about how when someone becomes newly disabled, they go through those same stages until they can finally reach acceptance. We have to mourn the loss of who we used to be, but also hope that in our cases, there’s “light” and physical improvement in our journey.

I watched an instagram video by this guy who had gotten a rescue dog, a black lab. He had taken it to the beach and it was dashing through the waves, jumping in the air, and absolutely ecstatic. The guy had added this soundtrack that joyfully shouted, “I’m alive! I’m alive!” When I saw it, I thought, “I need to figure out how to bring that joy of still being alive into my life.”

@barbarawolos Your appointment is only a few days away. Is Roswell Park in Buffalo, NY? I looked it up and it's National Cancer Institute designated which I recommend to anyone here asking for ideas about where to get treatment.

That's good that you won't have to wait very long to see the oncologist. I'd like to share that I've had similar experiences with doctors who did not listen to me. We women know our bodies best and we know when something isn't right. I'm relieved to hear that you were persistent and found a doctor who listened to you and followed up.

It's difficult and stressful to go through these appointments and with that I don't always "hear" what the doctor is telling me. I also forget questions I was going to ask and so I write questions down in a notebook to take with me to the appointment. My partner came to all of my appointments with me. Will you take someone with you to your appointment? Your spouse, partner, friend?

Will you please come back here and let me know how your appointment goes?

I am truly blessed to have Roswell Park Cancer Institute in my neighborhood. Everyone I saw from beginning to end was kind, informative, compassionate and truly had a heart for this kind of care. I have surgery coming up, another ct scan and waiting on results from all of the blood work....some in but not positive. I did go to my appointment by myself and I prefer it that way. Thank you for being here for all of us.