Decisions and advice

[dryden1]

Hi everyone, I hope you are as good as you can be.I finished by 3rd line of Chemo 5 weeks ago saw oncologist yesterday to get post Chemo scan and the results are good tumours hhaveshrunk nassivvely and my .CA 125 back to normal He is suggesting that I go on one of parp inhibitors either Niraparib or rucaparib. I am BRCA neg says both have pros and cons . Didn,t go into much detail except for say the former in some people does have severe side effects. The choice is mine. I want to get as much info as possible before I decide. So, for those who have had or are on the drugs what have your experiences been ? I am also told you can,t drink alcohol when on the drugs. ARgh ever???

Chris x

[Veronica58]

Hi,

I have been on Rubraca for a year now. Had dose reduction after 2 months as the fatigue was overwhelming. Managing really well on reduced dose....still feel tired at times but on the whole quite well.

Veronica

[Rachael47]

I've been on Rucaparib since last November. The worst side effect initially was insomnia, but my oncologist reduced the dose to 1000mg a day and I got over it. I had a wonderful few months when I felt better than I had since before my diagnosis in 2016. I think it may be wearing off, my CA125 has been rising (although it had decreased from 218 to 200 last month), I am increasingly exhausted and have stomach pains, although this may be my pre-scan result hypochondria.

Like all medications, it is very hit and miss. It suited me, but not everyone. I am BRACA negative, but BRIP positive. Unfortunately BRIP doesn't seem to make anything work better.

I don't drink much but certainly the odd glass of cider doesn't seem to hurt!

[Maxjor]

I was given the choice of all three (Rubraca, Lynparza or Zejula). My son does massive research (his way of coping I believe) and he said studies show Lynparza has the least side effects (in what HE read) but that does not at all mean its the best one. We chose it because I was so petrified from all I had read and wanted the one that I thought I would worry least about taking. It worked on me for about 9 months before my numbers starting rising by 2s so we kept on it for another 4 months till they started tripling and I had a scan.

I went for a second opinion to another cancer institute when I started to relapse and saw an oncologist who specialized in recurrent OC and she told me she adamantly believed in Zejula and that after my next round of chemo I should go on that one even though I had been on Lynparza and it stopped working before a year was up. I am not there yet--still in chemo- but am seriously considering Zejula when done. The side effects of which it seems to have the most are controlled usually through dosage. I understand some start at 200 mg and do not go to the standard 300 mg originally thought to be best. I think Zejula is the only one they recommend based on weight (under 170 pounds, 200 mg is suggested in the U.S.). I wish you luck in your decision and hope it keeps your numbers low or you get to NED!!! oxox

[bamboo89]

Just to say that Zejula is available here, but its called niraparib in the UK...and Lynparza is olaparib , with rubraca being called rucaparib in the UK. I think olaparib is still restricted to BRCA positive women, but not sure.

[Mptelesca]

Hi, Chris. Congrats on finishing your chemo and hope you are well. Great news on the scan.

I have been on Zejula for a year now. Last year after chemo I overheard my onc and nurse discussing which one to put me on and I interjected and said I liked the way Zejula sounded (like it's a pair of shoes I'm buying. lol). I'm BRCA neg so they said that the Zejula is meant for negative but also goes easier on Hemoglobin (I'm always below normal). So, the only thing it affected was my platelets. I started on 200 and then went to 100 and now I am on alternating 100/200 every other day. My platelets are back in range. Took about 5 months.

Whatever side effects I had (constipation, stomach discomfort and high BP) have now resolved. Seems our bodies adjust to this new drug. Good luck to you!

XOX

Marisa