Anyone on a clinical trial?: I just started one... - My Ovacome

My Ovacome

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Anyone on a clinical trial?

Diane1947 profile image
10 Replies

I just started one Monday night. Niraparib was USDA approved in March of this year. I am in my first recurrence, and am having a terrible time with ascites. In the past month, I have been drained 3 times. Monday it was 5 liters. That's a lot for me. Wondering if the new drug will help with this. I have been looking like I am pregnant since my recurrence in September now, even with the drains. Parenthesis is the proper name. Any advice would be helpful. Thank you.

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Diane1947 profile image
Diane1947
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10 Replies
Tesla_7US profile image
Tesla_7US

Hi Diane, "paracentesis" is the word. Did you have carbo/taxol first line? I had that and it immediately stopped the ascites. Just wondering why they are not using it again. Are you platinum resistant now?

collinst4 profile image
collinst4 in reply toTesla_7US

Hi Tesla. Apparently I am. I completed first line chemotherapy May of 2016. By September 2016, I was symptomatic again. I am anemic and I have kidney disease, so I was put on Taxol until last month, May .

collinst4 profile image
collinst4 in reply toTesla_7US

Thank you Tesla, for the proper spelling. I'm a little out of it sometimes.

kristinaapril profile image
kristinaapril

I am wondering the same thing as Tesla. Is your OC high grade or low grade? If it's low grade, I can understand why you weren't given a platinum regime, however if you are high grade, you should really ask about receiving it! Carbo tends to be what's used in first line - but there are a few others that are out there!

collinst4 profile image
collinst4 in reply tokristinaapril

I believe my ovarian cancer is high grade. I did have Carbo first line, also Taxol. Just Taxol after my recurrence in the fall.

kristinaapril profile image
kristinaapril in reply tocollinst4

I would ask your team why platinum based chemotherapy has not been discussed. How long were you NED? If it was over 6 months; platinum drugs usually are beneficial.

chrissapam profile image
chrissapam

Might be having it next week post Caelyx/Carbo. Let me know if it seems to help you! Chris

collinst4 profile image
collinst4 in reply tochrissapam

Hi Chris. You may be starting Niraparib next week? Well, I am starting post Taxol. I sure will keep in touch and let you know how it's working for me. I can tell you this, after two doses, I am feeling better. Hopefully, that's a start.

Alikay profile image
Alikay

I can totally sympathise with the ascities - I have just had my 3rd drain put in in 3 weeks. Drained 4 litres first time, 5 litres last week and still draining at mo. I'm hoping to start weekly paclitaxol on the Octopus trial next week if the Consultant says I'm well enough when I see her on Monday. I don't have any experience of the drug that you are on, but I do hope you soon start to feel better. Xx

collinst4 profile image
collinst4 in reply toAlikay

Thank you Alikay. I will be praying for you. I am hoping for you to feel better as well.

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