Nirapaib

[Merrymaid]

Morning lovely ladies

My cancer returned, slow growing apparently, under surveillance but in pelvis and outside of liver. Anyone else had similar? Also anyone been told about Nirapaib as possible treatment.

[Pianoplayer731021]

Hi, I take it that you had at least 6 cycles of chemo with debulking surgery between them. That’s what I had. My ct scan showed NED when I was finished with it. I started niraparib in July, but you need to watch your blood counts. I’m not sure why your cancer came back, but maybe because you didn’t start on a parp inhibitor. Either that and time just let the cancer cells to return. Anyway, I wish you well whatever the doctor’s treatment will be. Hugs , Donna xx

[delia2]

Hi. It seems unusual to use a PARP in that situation rather than chemo followed by PARP but it would be easier than chemo. Are you high or low grade? If the cancer is slow growing chemo might not work so well?

[Merrymaid in reply to delia2]

High grade, have to trust that your oncologist has it right, difficult sometimes.

[WendiC]

I will share my personal story - which is MY story and is here for your information.

I am BRCA 1 (I assume you are too) and my OC came back in 2019 after being gone for 14 years and treated with Taxol Carbo 4 rounds as it nearly killed me so I had to stop. There was no such thing as a PARP back then. BTW I was 50 - I am now 65 and had a recurrence in early 2019 - what a shocker! My CA 125 contd to elevate over 4 months while we made sure it was the same primary cancer - which lead to exploratory surgery I insisted on. When I went into survey on June 13th 2019 - I uttered “check my right side” as I went under. I love my Gyn surgeon. There is us no one I trust more. He found. Small spots of cancer (same primary cell type) on my bladder, colon, peritoneum, and my appendix (right side) was covered in cancer, puss, and ready to burst. As it turns out - that is what was causing my symptoms of unable to bare down fir a bowel moment, right side back pain,. My surgeon said I I was lucky that it didn’t burst.

He said a few shots of chemo and you’ll be good to go! My CA 125 was 3,800 post surgery. In late September 2019 I started 3 rounds of Doxil and Cisplatin. Early December my Oncologist was going in holiday and tested my CA 125 2 weeks early - and it had dropped to 40 - but I still had 2 weeks to go for the test to be apples to apples. Onc wanted me to have 3 more Doxil - but I refused and I suggested we wait until the 2 weeks is up to test -my CA 125 - we did and it was normal. We continued to test it every 30 days, and about 6 months later it started to creep up. I had a CT scan when it was 120 and NED.

I had been researching and listening to other Zejula (naraprib) patients and found the side effects frightening. I also saw a recurring problem - blood transfusions - but that stopped when the patient’s dose was lowered. I kept discovering that women who were down dosed after horrible side effects - did well on 100mg a day.

I decided on my own to start at 100mg a day. I told my Onc surgeon (the trusted one) after he was so impressed with how my CA125 dropped 200 points in the first 45 days. I also told him to keep it confidential. He is Onc /Gyn/ surgeon - and agreed I was doing the right thing.

I continued with little side effects, blood is tested once a month -on month 4 my Onc Pharm nurse called to tell me my CA 125 is now 20 and how happy they were. Well that is when I told here I took 100mg a day not 200mg. She said to keep doing what I was doing. I only hope they take the info to help others.

People get angry at me when I say I took this into my own hands. But, I was willing to use myself as a test because it just didn’t make sense to me that so many women were suffering. Plus I just saved Kaiser - the cost of double the dose ($24,000 a month) and blood transfusions, etc. I don’t need to refill for another 4 months because I was taking 1/2 the prescribed dose of 200 mg a day.

So please do your research on dosage. I totally recommend taking it - but like with anything else - starting at the low dose - should be the norm - but I feel big pharma is still using “us” as test rats by “Over Treating” - why do we need to suffer more than we do - a lot of women are NED on 100mg a day.

That’s my advice ❤️

[Merrymaid in reply to WendiC]

Thank you for sharing, will defo bare in mind.❤️

[Colleenmary in reply to Merrymaid]

I have been at this for 10 years! Still going, praise God!!! I am presently on Niraparib using it as a treatment. It has stabilized my cancer these past 7 months. I could only tolerate 100 mg as well. Before that I used Lynparza as a treatment also at the lower dose. These Parps can be used as frontline treatments!!! God bless you!!

[Merrymaid in reply to Colleenmary]

Thank you for taking time to reply.xx

[Irii in reply to Colleenmary]

That’s good to know. So, did you start with 300 mg dose ?

[Sashay2020 in reply to WendiC]

Thanks so much for sharing your story, WendiC. When I completed my front line chemo, my doctor wanted to put me on niraparib 300 mg. I went online and read though the information on the pharmaceutical company’s website for the brand name, Zejula, which indicates that lower doses are still effective. My doctor agreed to start me on 200 mg, but he would not start me on 100 mg. I had trouble with my bloods during chemo and had to have Udenyca shots (filgastrin) to bring my bloods back up. I was diagnosed by a rheumatologist years ago with fibromyalgia which causes me pain. Chemo only added to it, and the Udenyca shots were very painful for me. Because I am BRACA negative, I weighed risk benefit and quality of life and declined the niraparib. I am so enjoying being off painful treatment. I know my choice may shorten my life, but I made the best decision I could for me at this time. I expect to reoccur and when I do, if niraparib is still an option at that time, I may take it then. Thanks again for sharing your story, andBest wishes from Louisiana,

Sashay

[WendiC in reply to Sashay2020]

I felt the same. And during my 2nd infusion of Doxil In 12/20 I lost 15 lbs in a week as I was given Filgrastin (3 in 3 days) it made me feel horrible, bone pain, etc. I know it was Filgrastin because my 3rd Doxil I felt lightly bad for about 3 days and not 18 days like the session before. It also caused 1/3 of my hair to fall out a month after I had finished my 3 rounds. So the Filgrastin may have helped your blood count but it makes one feel bad.

I hesitated too to start for all the same reasons. But when my CA 125 started to rise 4 months after chemo, I thought. I will try it - but only at 100 mg. I will give it 6 months and then tell ONC. . By month 4 my CA 125 is normal - I did Not suffer any side effects.

And now I plan on taking it for as long as I can - as Ovarian Cancer is the silent killer - so why not try to kill it silently.

it’s not like Chemo - if you stop the side effects go away fast. .

Dont be afraid to start because of side effects - That’s why I used myself as a test - and started at 100 mg against my doctors orders. I can’t bare to hear stories like this - of women afraid to live.

There is a FB Group called PARP Inhibitors- where women share ALOT - and if you are not a member - it’s a great resource. ❤️❤️❤️

[Sashay2020 in reply to WendiC]

Thank you. Very valuable information!

[Irii in reply to WendiC]

That’s a good info. My doctor has advices 300 mg to start with. I will wait for 1 week to see any side effects and blood count information and then ask my doctor to reduce thek dose

[Irii]

It is a good therapy to keep the disease away