Hello, My name is Nicole. Im 42 and live in Florida with my husband and our two children 8&9. i had battled and won stage I breast cancer when I was 26 years old in 2009.
I had been complaining of all the symptoms in 2022 only to be brushed off and not taken seriously. When my OBGYN took me seriously and sent me for the right tests I was diagnosed with Stage IV Ovarian Cancer. It was next to each clavical and next to my heart. Then it surrounded my lady parts. I started chemo right away and finished with the fourth one and had another scan done. The spots next to my clavicals and heart were gone. I was cleared for surgery. Surgery was longer than expected since they found cancer in my diaphragm, on my liver, bladder, and small intestine. I came home and recouped for a month and then started back up on the chemo treatments. I finished on 7/5/23.
I have been on Lynparza for about 6 months. I was first put on Zejula and it dropped my platelets and my numbers dangerously low. I had to get platelet and blood transfusions. Then they switched me to Lynparza. Im at the year mark for being NED and scared to death every single day.
How long have some of you been on parp inhibitors for and how long were you NED from it.
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Hi Nicole, I have no experience with parb inhibitors but I can relate to you and you're fear of cancer returning. I was initially diagnosed in 2015 aged 48 yrs, had surgery and chemo, unfortunately I had a recurrence exactly 2 years later, more surgery more chemo, I found it very difficult 2nd time around. Today I'm well, my scans have been reduced to once a year now, every negative scan lessens the fear a little more. You've been through such a difficult time, best of luck going forward
Hi it was carboplatin and gemcytabine,if I remember correctly the schedule was both drugs week 1, gemcytabine week 2 and week 3 was a free week, had that for 6 cycles. Now I'm on letrozole (aromatase/oestrogen blocker)tablet daily as maintenance.
Would you mind sharing what type of OC was this regimen given for? Low/grade serous? Endometrioid? Thank you, Tvam and so very happy that you’ve been well since the 2nd intervention!🙏
Hi Nicole! After a recurrence and treatment with chemo, I was stable for just under two years on Lymparza. For reference I also have stage 3c HGSOC. I am BRCA - genetically, however. (Sounds like you might be BRCA+?) I was hoping for six months! It was never NOT nerve wracking though. If you're BRCA+ the research for stability of that med is even more encouraging.
Hi, thank you for your reply. I am BRCA 1 positive. They said because I did have the mutation that my body was receptive to chemo. Every time I had chemo my counts would cut in half, so I finished chemo on July 5th last year and so far my CA125 is within range and between 14-17 every month when they check. Thank you so much for sharing!
Hi Nicole. I had high grade serous OC stage 1C in 2017. A recurrence in 2020. I started Lynparza after chemo. I couldn’t tolerate 600 mg so I ended up on 450 per day. I stayed on it for a year and a half. I didn’t quite make the two year mark because it affected my bladder. So far I’m clear. I just had surgery for breast cancer and I see my oncologist tomorrow. My numbers started to go up but not doubling like w OC.
I just wanted to tell you that I think you’re amazing. Your story will help me if I think I’m having a recurrence. I get really nervous but you are incredible. Take life a day at a time and enjoy every moment. I try to only deal with cancer when I absolutely have to because I want to enjoy every single day of life to the fullest. That thought and my Faith is what carries me. ❤️
Your message helped me too see a different perspective. Thank you so much for reaching out to my message! Im glad Im able to help you and other women as well. This card were dealt is unfair but Im trying to make the best of it and be grateful as much as possible. Thank you! Hope to chat soon.
Hi Nicole, I am also BRCA1 positive. I started taking Lynparza in July 2021 after a recurrence. My dosage had to be reduced twice to get to a level that I could tolerate without it dropping my counts too low. I am currently taking 400 mg daily, and my CA125 level has been at twelve the last two times it was tested and has been as low as seven. I wish you the best of luck. Anne
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Seeking advice from Lynparza, Rubraca or Zejula patients.
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