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

My Ovacome

17,594 members19,873 posts

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.

Written by
Diane1947 profile image
Diane1947
To view profiles and participate in discussions please or .
Read more about...
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 to Tesla_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 to Tesla_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 to kristinaapril

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 to collinst4

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 to chrissapam

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 to Alikay

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

You may also like...

phase 1 clinical trials at Royal Marsden — anyone has experience?

1 , a possible new drug is having its first tests but in phase 3 , the drug has been shown to work...

Waiting for Appointment for Clinical Trial

only 3 drugs, I just feel that I haven’t tried enough yet for that to be it! Also, how long have...

Taken off clinical trial

was having pain every time I breathed, but today I have none! I am feeling really down wondering...

Requests to Join Clinical Trials

the UK. This helps to fill trials with the best patients, it helps patients access new treatments...

No Clinical Trial available for me

was told they can use drugs in their very early stages and have not always been used on humans...