Hello Everyone - update!
I went to MD Anderson the end of January (and got caught in the ice storm!) and met with a specialist in rare ovarian cancers. He was exceptional. He explained that Clear Cell Carcinoma is the highest grade of all the subtypes - so that helped clarify how serious this is ... They also recommended starting with 6 rounds of chemotherapy which I am doing now and tolerating well. I am getting vitamin infusions the second of every 3rd week during chemo and following a mostly ketogenic diet after reading the Metabolic Approach to Cancer, as well as meeting with a nutritionist that teaches that protocol - so specifically for cancer patients. The oncologist at MD Anderson kept reminding me that "Anything is Possible" which was helpful. Early stage or late stage does not always predict length of survivorship. Anything is Possible ☺️ He is running a handful of genetic and molecular tests to find out if I am candidate for immunotherapy if there is a recurrence. He said there are immunotherapy drugs that have been successful for clear cell as I have read from women on this forum and Inspire. Specifically Keytruda I have read. So I am taking notes on these forums too. I also found out that I have the genetic mutation PALB2 which makes me more susceptible to ovarian, breast and pancreatic cancer. This will help my doctors and myself be more vigilant about monitoring me in the future. Not sure if any of you have had genetic testing done ... And in regards to my initial question on this thread, if anyone is reading this and questioning chemotherapy for clear cell as I was, I now support doing it. It is not as bad as I had imagined and knowing what I know now, feels like it is the smartest decision to do as frontline treatment as well as an integrative approach.
Thanks to those of you here that helped encourage me to be brave and begin. Please know I am thinking of you as we are going through this together, and I am grateful for this platform to share experiences, ideas, knowledge, and receive support so we do not feel so alone. Thank you ALL!!! 💜

Hi Melanie, This is really helpful information. I am really sorry you are going through this, but am relieved to hear the Chemo is working. That is good news. Stay in touch. I will be thinking of you. I hope things continue to go well for you.

I do. I am getting my second to last chemo treatment today. I’m stage four. My ca125 numbers went from 35 to 5. It is working now for me. The thing is that clear cell can become resistant after time so it might not be the case for me soon.

I have the same - clear cell stage 1A. I did NOT do ANY chemo. My CA125 was 799 before surgery and now 22. I still have one ovary and 4 fibroids one is huge. I still have periods. God Bless.

Rebecca2, Have you been told how your CA125 levels have been doing? If they are declining that is a good sign that things are working