I am new here

[MaryRay]

I was initially diagnosed with Ovarian Cancer in 2015 treatment - surgery and 6 rounds of chemo. I had a little over 2 years of remission, it came back in Oct. 2017. I just finished another 6 rounds of chemo and am currently taking Lynparza for maintenance. My 125 is no longer valid - it continues to register as 1 or 2 even though I have cancer and the only way they can monitor results of treatments is through scans. I am having a really difficult time with the Lynparza. The oncologist tells me that it has the fewest side effects of the PARP inhibitors and asked that I give it another month to see if I adjust. Anyone else with difficulties taking Lynparza?

[Tesla_7US]

Mary, in US there is a new PARP inhibitor called niraparib aka "Zejula" that has recently been approved for BRCA 1+ 2 and non-BRCA patients as well. Allegedly this one has fewer or "better" side effects.

[Freedomgpho in reply to Tesla_7US]

I’ve been on it since October! There are side effects but manageable with both medicine, diet and medical marijuana which is legal in pa.

[Tesla_7US in reply to Freedomgpho]

wow, sounds like zejula is chemo in a pill! I'll have to decide whether I want the side effects. I'm BRCA negative so the benefit to me is very limited.

[MaryRay in reply to Tesla_7US]

Interesting - my oncologist told me that Lynparza has the fewest side effects. I have been taking it for 5 weeks and it is not agreeable. They asked that I stick with it for 8 weeks to give it a fair chance and it sometimes takes that long for a body to acclimate to it. I have tried managing the side effects with medical marijuana, prescription meds, and diet. Nothing works consistently so it is a crap shoot what will work on any given day. I will look into Zejula. Thanks.

[Tesla_7US in reply to MaryRay]

Before taking any drug ask to see the long term study data that proves it will be of benefit to you. Some of these drugs seriously impair quality of life. It is a deeply personal decision, this drug taking. For my part, quality of life is paramount. I do not want me or my loved ones to suffer from the "fighting" of this disease.

[Cjbloomq]

I have been on Zejula for over a month.I am BRCA negative.The only side effect I have is controlling my bloodpressure which I got on Avastin 2 years ago. I take meds for bloodpressure. I feel fine so far. Good luck with whatever you decide to do.

Caroline

[Angella51]

Hi Mary, first sorry to hear you have to go through this, my CA 125 is also (and has been) low, was yours ever high? Also how did you know you were having a recurrence? My CA125 is very low but I’m so symptomatic. Thanks and hope you are well

[MaryRay in reply to Angella51]

Hello Angella51, my CA 125 was high when I was first diagnosed 3 years ago - 146. It dropped after my surgery to around 56 and by the 3rd round of chemo (the first time I went through it) it dropped to less then 10. The two years I was in remission the CA 125 never went above 4. When the cancer returned last fall, I had just started getting symptoms and I knew it was back even though the CA 125 tests came back with 1 or 2. I have since read that the CA 125 becomes invalid in nearly a quarter of women with OC. It makes it more difficult to know if treatment is working - you have to wait for a scan.

[Angella51 in reply to MaryRay]

Thanks for responding, I’m just not having any luck with my Drs. My CA 125 never went above 31 even when I had a cantaloupe size tumor and nothing new has showed on my scans but I’ve lost 35 lbs without trying and feel awful most of the time so I was wondering what symptoms you had.