Hi my name is Carol Lee. I was initially diagnosed with stage 3 ovarian cancer in October 2019 and after surgery and 5 months of intensive treatment, we thought we were “good” for awhile. Felt every bit normal until mid August when cramps returned and after a CT scan last week was given a recurrence diagnosis. Obviously something didn’t work but my CA 125 marker was 6 in August. We are trying to keep positive but is very difficult. Covid certainly doesn’t help. Anybody have any suggestions or happy stories. A lot of the posts on this forum seem to be old?
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This is wonderful group to engage with for information and support. Think about joining one of our live chats...weekly on Tuesdays at 7pm CT and Thursdays at 1pm ET for immediate feedback. Ovarian Cancer Canada also has a very helpful booklet on recurrence I can recommend. https://ovariancanada.org/Living-with-Ovarian-Cancer/Recurrence for more information on recurrence and to order the booklet.
Regardless please keep us posted on your progress and, Carol Lee, reach out anytime we can be of help.
You can also check out the recorded webinar series ....
https://ovariancanada.org/Living-with-Ovarian-Cancer/Webinar-Series
Be sure to scroll all the way down as there are several about recurrence.
Did your medical team give you some treatment options or a plan?
I am new to this site, and I love all the encouraging words I found here.
I was diagnosed in 2016 with stage 3b low grade serous OC, had surgeries and chemo, tests galore! Lately, I experienced a severe allergic reaction to Carboplatin, so the chemo was stopped. My oncology team told me they will again keep an eye on me, and I have a follow-up in person visit with my oncologist in April. I am on Anastrozole now, my last PET/CT showed no new disease, but the existing lesions are there, one has not changed, one has increased in size and activity. My Ca125 has been high and increasing lately, last reading 461. I feel like a ticking bomb!
They told me in 2019 that this cancer is like a chronic disease, and will keep coming back....
I am just wondering if anyone has/had a similar experience? Any other treatments? Has anyone gone through immunotherapy? Diet changes? I feel so helpless!
I was diagnosed in 2017 but with high grade serous...3C. For me, the cancer has recurred too and clearly the make up of the disease for me is such that I will never be cured...it will recur from time to time. But these days there are so many new drugs and treatments to help delay recurrence...and to treat recurrence...that we are now living longer and better lives than ever before.
If you haven't already, I suggest you order the two booklets that Ovarian Cancer Canada provide (in hard and soft copy)..By Your Side and Still By Your Side. The both have lots of information on the two stages of treatment...frontline and recurrent...that might help inform you and answer many of your questions. I found both very helpful guides over the past four years. Their website as well has a wealth of information from personal stories to videos you might find encouraging and helpful. This Thursday OCC is holding the first in a speaker series, this time on the topic of clinical trials that you might find informative as well. You can view the OCC website at ovariancanada.org. Order the booklets at https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources. And you can use this link to register for the speaker presentation on clinical trials: http://noca.convio.net/site/Calendar?id=101023&view=Detail&fbclid=IwAR3wlZ-uA-BCZu67Oj4om9YIfWKhEdjH-EnM6gD1KB8lfbVHKr9UWXDE1xs&_ga=2.107597894.519536456.1613841778-81262107.1582745669
Finally, you don't need to feel helpless...although what your feeling right now is normal and something most of us have experienced. This community is here for you. Feel free to reach out anytime you have questions...or just need to let off some steam. We do have a live online chat on Thursdays at 1pm EST that you might also find .. fun. You need only sign in to OVdialogue and click on the Discussion : Teal Thursdays..... to enter the chat. We'd love to have you join us, any time. In the meantime, don't lose sight of how strong and resilient you have already been.
I followed the links you provided, thank you!
It is amazing how important it is to connect with women who have similar experiences than our own. I really appreciate the sharing videos.
Thanks again!
Wishing you many many more cancer-free days.