Hello

[Sonya49]

I’m Sonya from NZ and I was diagnosed with Stage 3B Endometrioid Ovarian Cancer in Jan this year. I’m in my 40s.

I’ve had full debulking surgery and have just finished my 6th (and final scheduled) round of carbo/taxol chemo. I’m BRCA negative.

I’m keen to find out if any women here with the same subtype are taking any preventative medications?

Anyway- a problem shared is a problem halved right? 😊

[Sk72]

Hey Sonya, I'm in the same boat 3B epithelial, diagnosed in Nov last year (right before my 51st birthday). Went through the same surgery and chemo. My doc has me on an ongoing targeted therapy (Avastin), every three weeks. It inhibits angiogenesis or so I'm told.

The other stuff I'm taking/doing

- a plant based medicine with ginger as the main ingredient

- meditation and gratitude

- practising breathing to improve immunity - wimhofmethod.com/breathing-...

- exercise (swim/Pilates/walks)

Am also looking into mistletoe extract and Vitamin C.

Ping me if you'd like to chat - troubles halved indeed

Oh, I'm Sunitha from India

[Sonya49 in reply to Sk72]

Thanks Sunitha. So cool to have people from all over the world supporting each other on here.

Unfortunately Avastin is not funded in NZ and costs $50,000. I have a big list of questions to ask my oncologist at my next appointment!

Interesting about vitamin C. Someone else mentioned that and it’s on my ever-growing list of things to look into!

All the best to you 😊

[Kcwz]

hello, I too got diagnosed with an Endometrioid cancer in march - have my last cycle of carbo/taxol in 2 weeks. I am also in my 40s and also keen to try and adapt life to prevent reoccurrence! I have changed my diet to help aid medical menopause as not having HRT - increased exercise to aid bone density. But to be honest I have been given very little information from oncology teams about how to move forward! I have an oncology appointment at the beginning of September and have my list of questions so will share any helpful info!! Well done getting through treatment!

Have a great day

Kerry

[Sonya49 in reply to Kcwz]

Thanks Kerry. I feel the same. I’ve been told of 2 medications that I CAN’T take, but not what I can try. It seems there’s preventative meds available here for high grade serous and for BRCA positive.

Nice to hear from you. 😊

[Saintgermain]

Hi Sonya,

I was diagnosed 3B endometroid in 2021 this type is estrogen driven I would speak to your onc about letrozole an aromatase inhibitor as maintenance I regret not taking it after frontline I chose to follow a low estrogen diet recured after 22 months I added it then but didn't work as the best time to start is right after finishing carbo/taxol and optimal debulking which is key. I'm in the states recently flew to MD Anderson for a consultation with an expert in low grade as ours is a bit rare. Currently I'm on Doxil/Avastin for a recurrence. I also take supplements I will PM message you with the info.

[grammeejill]

hi Sonya!

I was diagnosed Stage 3B Endometrioid Ovarian in September of 2015.

I had 6 rounds of Carbo/Taxol and have had no maintenance drugs. I did have a small recurrence in the form of a small lump in the inguinal area. Surgery and 25 rounds of radiation took care of that! I wish you well please keep us updated! Jill

[Kcwz in reply to grammeejill]

Sounds positive xx glad you are well

[AuntyOrange]

Hi Sonya, I totally agree with Sunitha. On top of most of her advice, I also follow a vegetarian diet. I've been on Avastin for a couple of years which is covered here in Australia so I'm surprised it's not in NZ. I'm PALB2 positive so even with all of my preventative therapies, I have still had 3 reoccurrances since original diagnosis in 2015 but I believe they have got me through my ops & chemos to still be here today. Love & light. 👩‍❤️‍💋‍👩

[Sonya49]

Thanks Aunty! Yes I was wondering if it was covered in Australia. We are waaay behind Au and Uk with available funded meds here unfortunately.

Have a great day 😊