Parp Inhibitor

[Brenda9a]

Hi - is anyone taking one of the Parp Inhibitors and would be willing to talk with me? I'm going to start the drug soon and would appreciate hearing about your experience. Thanks.

[Bahamas22]

Which one will you be taking? I was in Zejula ( I forget the proper spelling) for about 6 months. But it stopped working. They recommend 300mg. was way to high for me. Made me very sick. Went down to a 100mg then Worked up to 200mg. So start low work your way up if that is the one they are giving you

[jclee77]

I took Zejula for three months....lowered my CA125 first two months, then stopped working...dr took me off and went back to Taxol & Avastin combo. THAT worked-CA125 went down to 5. Made me sick at 300 mgs...lowered to 200 mg...

[SurvivorSusan]

I took Olaparib for 7 months and then it stopped working. Now I am doing chemo. The side effects were minimal, but I did notice a decline in energy. I was just so shocked when it stopped working because I thought i was home free. Then my doctor told me that they all eventually stop working.

[9667]

I am absolutely happy to talk to you...Let's talk WED. or THURS. this week.

What is your cell # and a good time frame to call ? I am on CA time.

[Beachperson]

I have been on Lynparza a little over two months. Find out next week if it is working. Started out at 300 dose and reduced to 200. I feel perfectly well but for some reason my kidneys expel too much salt from my body on higher dose. Taking salt pills now. I also have all my old energy back. The inhibitors only target bad cells so I think that's why I feel so great. No other side effects at all.

I understand the norm for this drug working is six to eight months but has worked for some for over a year. That's for someone like me that doe ex nt have the BRCA mutation.

For those with the mutation it works much longer. As in years.

I was concerned about side effects and prepared but I never had side effects (that I could feel) with other chemo treatments either. Very blessed with my treatment at Cith of Hope

[BetsyL]

I was on Zejula. It did a number on my platelets, so I went from 300 to 200 to 100 mgs over six months. My doc and I decided that I couldn't stay on it. I was nauseous and tired while on it. At one point I wanted to go off of it and take my chances with a recurrence. Which happened anyway...

[Cjbloomq]

I am on Zejula since May 2017. I have been on 300mg from the start,take at bedtime. No real side effects,but dry mouth and a little tired but not enough to keep me down. Ca125 has stayed around 7. I am BRCA-negative.So far so good. Hope this helps,have questions I'm here.

Best of luck,keep the faith.

Caroline

[jtbaart]

I've been on Lymparza for over a year. My numbers great and they tell me I was one of the sickest patients the team at Sloan Kettering had in treatment.

Jeannine

914-525-3812

[Fixerupper1234 in reply to jtbaart]

Jeannie I to am a patient at MSKCC. I am thinking about asking if I can go on a Parp. Did you have any side effects?

[9667]

I would be happy to talk to you. Email me your cell # and I can call U ?

I am on Lynparza.

[e-mail]

[9667]

First of all sorry that also happened to you...my favorite word is SHITZKEY!!

I was diagnosed 1 year ago. I was stage 3 Ovarian "C", BRCA #2, had 3 chemos, then a hysterectomy, and 3 more chemos. I am now 66.

I did well on the chemos (Taxol/carbo), and was encouraged to begin Lynparza, 3 months after the last chemo.

I have been on Lynparza for almost 5 months. I DO believe that I am doing great. I do get fatigued but really at the end of the day (7 PM ish).

I live a full life, exercise daily, travel, no issues eating, but I do get tired. I am a very positive person and I KNOW THIS HELPS!!

Please feel free to ask me anything. I have so appreciated gathering info. from people since this whole shebang began.

Debi

[e-mail]

[9667]

I did reply...did we talk and do you have more questions?

[e-mail]

[Mamaw1]

I am on Zejula. Have been since January 2019 after second occurence and three heavy duty rounds of taxol and carboplatin which I reacted to this time around and had to be desentisize. I tried Avastin but it sent my blood pressure into dangerous levels. My c125 is holding at 13. I have no side affects except my appetite has changed, I eat less lol. Take 200mg a day.

[smithgirl44]

I have been on Rubracca a parp inhibitor for a year after 2 round of chemo. Ca 125 remain at 9. Only side effect is fatigue. I was first diagnosed in 2014 with stage 2 ovarian cancer.I had a complete hysterectomy at that time. After 3/1/2 years I had a recurrence with ca 125 of 73. I had another round of chemo ending with an infusion of avastin. Started pills last aug2018.