I've been on Olaparib for the past 2 years following frontline chemo (NED) for ovarian cancer (stage 3) and I'm due to finish in May. In one way I'm pleased as I've been very worried about developing MDS/AML following a few scares with my white blood cells dropping. On the other hand, I'm absolutely petrified of losing my safety net and really worry about a recurrence. I just wondered if any of you could share your experiences after ending Olaparib or another PARP. Have you had a recurrence or have you stayed NED? According to the SOLO1 trial about 45% patients made it to 7 years without a recurrence but I haven't heard of anyone directly on here or any other chat boards who have been NED that long. I just wondered what your experiences have been if you don't mind sharing. Also, do you have frequent bloods tests and scans? I think I'm feeling a little abandoned after all the help I've had from the medical staff and now facing the unknown. Thanks so much x
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Carpediem68
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I finished Olaparib in December 2021, having been diagnosed with stage 4 ovarian cancer, since then I’ve had 3 monthly blood tests and a conversation with my CNS who gave me the results, which luckily have stayed low, CA125 is at 5. February just gone was my fifth year anniversary, {which considering they didn’t think I’d leave hospital after my diagnosis is fantastic} so I’ve now gone to 6 monthly blood tests which I’m ok with. I think I’m enjoying less contact with hospitals and doctors, initially I was worried like yourself but you do get used to it. Anniversaries and occasions can sometimes be difficult, I struggled with my 5 year anniversary, as that was something my oncologist had said “cross your fingers and hope for 5 years” but that was February and I’m still going. I don’t have scans, but again I see it as a bonus, no hanging round hospitals and having a cannula stuck in your arm. You will cope with letting go of Olaparib, after all it’s not the biggest thing you dealt with in the last few years. Good luck and loads of love.
Thank you so much for sharing your experience. I'm so glad to hear that you have been so well for so long after stopping Olaparib! That's very encouraging and you must be thrilled. I think I have become a bit dependent on my monthly blood tests and close contact with the medical tram, as well as knowing I am actively doing something to keep the beast at bay. I hope I can adjust as well as you clearly have. I think it's just the unknown all over again that unsettling me. Sending so many best wishes to you that your current status continues indefinitely! Good luck! Sam xxx
Your not alone, I had a huge argument with my CNS at the end of my course of Olaparib, she had me down as finishing a month earlier than I should of and I’d had the odd break from my tablets so I’d planned on continuing to take them, she kicked my arse big time and wrote a letter to everyone who had been involved with my case, I felt like a naughty school girl, that’s how much I freaked out. So you are normal, I think we all feel the same, and it is the unknown but you’ve survived lots of unknowns so far and this one will be the same.
Hi Dee. Gosh that sounds absolutely awful! I have some tablets left too after I paused my treatment a few times and I don't know what to do. I was going to ask if I should finish them off or stop exactly when planned. Not too sure I should mention them now! It's only a couple of weeks worth. I guess I'll ask when I see the oncologist. I hope you have a new CNS now! Blimey ... xx
Hi Sam, I can laugh about it now, I had about a month’s supply and took a judgment call as I’d had good bloods for the whole 2 years, my body, my life. Yes I do have a new CNS. Good luck with the oncologist xx
Hi. I hesitate to respond but I was on Olaparib for three years after first recurrence and then went off it. One year later and I have a recurrence. However my oncologist always emphasizes how different your status is not ever having had a recurrence. You have a shot at being cured. My ca 125 is not a marker so I get scans every six months and saw the oncologist every three months.
Hi Delia. Thanks so much for sharing and I'm so very sorry about your recurrence. Don't hesitate at all to share your story. I wanted to get a feeling of everyone's situations. I guess it all feels a lot like pot luck. No one seems to know if you will recur or not. That's what makes this disease so frustrating. I'm so glad that you had a good spell on Olaparib and I'm sending you lots of luck for continuing treatment and really hope it works well for you! Is there any chance you can go back onto Olaparib as you recurred a year after stopping? Thanks so much for sharing. xxx
It was originally but my doctor said they don’t want people on it longer than two years anymore but obviously not everyone agrees. I go to one of the top cancer centers in the US.
hello there. I completed my 2 years Olaparib almost 2 years ago. I pleaded to stay on it, asked to fund it myself. A resounding NO! But thankfully I am still here and well with 3 monthly bloods and CT scan if thought necessary. Still worry about twinges and potential symptoms of a recurrence, but the worry probably has lessened. I thank God and those wonderful scientists who developed Olaparib every day. I do believe it is a wonder drug. Good luck.
Hi Rose. Thank you so much for letting me know your experience. I'm so pleased you are doing so well! I have read that they think Olaparib mostly works in the first year or two. Let's hope the scientists are right. There seems so much they still don't know about PARPS. Long may your good health continue! xx Do you mind if i ask if you are BRCA?
Hi Denise. Thank you so much. Wow! 4.5 years is very encouraging! Do you mind if I ask if you are BRCA? I’m brca1 and have the whole breast cancer discussion going on too. It never ends . Hope you stay well for many, many more years to come! xx
I think that's very good advice from your Onc! Amazing about your friend! I have the germline BRCA gene so breast cancer is also a worry for me too. My next decision if I can keep the OC at bay is whether to have a prophylactic mastectomy. BRCA really is the gift that keeps on giving....
insist on going for blood work as often as your insurance allows. I was NED for 5+ years, and had a CA, 125 Test at that time which showed my numbers were up. It’s really important to keep going back for blood work.
Hi Leniko. Thank you so much for your advice. Yes, I agree. I do worry that surveillance may not continue as frequently as I would like. I'm in the UK so I have to go with what the NHS will offer but I'm thinking of having private tests too just to keep on top of things. Thank you so much for your advice and I rally hope you are doing well now xx
You took the words right out of my mouth lol,snap!! Im the same with coming off of Olaparib after almost 2 years but from what everyone's been saying, its extremely encouraging advice, so thanking everyone for their responses, this forum really does help ease any questions we all have on this cancer journey!!NED for almost 18months now, delays from the start with 400mg daily of Olaparib as bloods were low, so they recently reduced the dose & much better with that & CA 125 had remained low but my Oncologist has said they only offer it for 2 years now(NHS) but that, the 2 years I have been ln it, its sown its seed as such putting a barrier up for any recurrence but yes I get how people would want to stay on it longer as it is a safety net, good luck with everything xx
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