Hi all - I am so thankful for this forum and the sharing. A recap - I was dx OC Stage 3 - May 2018 - CA125 was 2600 - had surgery followed by 18 consecutive weeks of taxol with Carbo added every 3rd week. For the following 18 months my CA125 was under 7 - until March 2020. I started Caelyx/Carbo every 28 days in June 2020 with CA125 at 200. Thankful the CA125 has come down each month as I was warned it might take a couple infusions before it lowered. It’s now 38 with still two more infusions scheduled. When those 2 infusions are completed - I was told I should plan to start on a PARP for maintenance. Is this now the most common thing to do after chemo ends. It wasn’t presented as an option when I finished chemo in 2018. I am Braca neg. But I am seeing more ladies mention being on a PARP. Appreciate your input - as always! Thank you! Blessings!
PARP as maintenance: Hi all - I am so thankful... - My Ovacome
PARP as maintenance
If you have a recurrence and have reacted well to Carboplatin then I think PARPS are being used. They are easier to take than chemo, with less side effects, you don’t have to travel into hospital or be in hospital for chemo and it’s not invasive all bonuses nowadays. Good luck with it.
Hi l was diagnosed in 2012 stage 4 ovarian cancer and l am braca negative, l have had 4 recurrences and have been on a parp for 2 years now with few side effects
Thank you! I was wondering too if a PARP was given continually once started or for two or so years?
Hi Elayne
Olaparib was trialled taking it for 2 years and then continually. I trialled it continually and in fact the results are in and the trial ended. I continue to take the parp (6 years 9 months to date). I have remained NED for over 7 years now. I am BRAC2 positive however.
Have you been NED since taking parb?
I presume so l have never asked just keep taking the tablets!
May I ask what Parb you are on.? Thanks.
I am on niraparib also known as Zejula l hope this helps
Thank you.
I was given Caelyx/Carbo for my first reoccurence in December. I only had 4 infusions as Covid came along and my oncologist said I could not complete the treatment as going to the hospital was too risky. I should have had 6.
I was given Olaparib after 6 weeks and have been taking them since June. No side effects and my ca125 is now 6.
As I am BRAC 2+it was suggested to me that I would take this for maintenance .Hope it all goes well for you .Ann x
Thank you Ann! Great to read you haven’t had side effects! Olaparib was one of three that they mentioned. I have two more chemo infusions so they said we’ll be discussing maintenance shortly. Congrats on your CA125 being a 6!!
Hi, I've just started my PARP today , I have Primary Peritoneal Cancer a rare type of Ovarian cancer, also have BRCA1 gene. Had my 6 cycles of chemo and debulking surgery- very lucky that treatment continued during this Covid outbreak. Feeling very positive and looking forward to prolonging my remission for as long as possible. Not sure what side effects await me, only time will tell. Good luck with your treatment x
Good luck with your treatment! I’m reading good things about PARP as maintenance so you should feel positive! Take care!
Thankyou x
Hi I have been on Niraparib since April 2019 with no side effects and CA125 of 10-12 😁 BRCA2 +
Good luck with it xx
Thank you! Such encouraging news!
Hi Elayne, oK have a recurrence and I have I more infusion well actually two as I am due carbo/gemsar on the 9 Oct them just gemsar on the 16 Oct. Following this aI am starting on a parp inhibitor Rucaparib taken twice daily. I am not BRCA positive but because I had fallopian cancer that is why it is available to me, plus also I had chemo 1st time around 4.5years ago..
From what I have read and the leaflet I was sent regarding this drug they seem to be very good although of course like everything they may not work.
My .ca 125 was 532 prior to starting the 6 cycles of chemo and my number has gone down to 39 which is great, but I am hoping that it will have dropped more after the last dose plus the one to come.
I suppose it is personal choice but I am willing to try things to give me the opportunity of more time.
I hope that this is helpful to you. I just remembered that this particular parp was only given release last Oct/ Nov by NICE.
Good luck with whatever you do. Take care.
Caleda x
Thank you Caleda! We are similar - CA125 has responded well - we have two infusions to do for first recurrence and although we are Brca neg - we can then do parp maintenance. This is better than 2 years ago when I completed first chemo. At least maintenance is offered. I’m thankful and hopeful for us! Take care!
I am also negative for that BRCA gene.
At least as you say this is better than 2years ago, which is not that long ago. I am grate for being offered the opportunity and just hope that it works for me,and you whichever parp is decided.
I will keep in touch and let you know what transpires as it would be good to compare notes. Take care
I was stage 4 and went through 7 chemos and major surgery. They put me on a parp inhibitor called Zejula. My blood hemoglobin dropped so low that I had to have a blood transfusion. I was short of breath and very dizzy on 200 mgs. that I was taking. I’ve been off from it for a week and just had another blood test today. Don’t know what they will do next.
I will hold special thoughts for you that you are able to do maintenance. I’ve read lowering the dosage can help - as well as a different parp. 🙏🙏
I believe that is Niraparib. I am on Rucaparib and the same happened to me. It is certainly easier to administer than chemo and the side effects are not so « in your face » but they are there! I was on 600 mg although I felt OK I reacted like you and my dose was lowered to 300 mg. I have been taken off it for rests twice. This is about the longest stretch I’ve been on it without incident (4 weeks) and I am getting increasingly tired. I mean I could sleep and sleep. I have to force myself to dress and do something but when I do it’s manageable. It will be interesting to see what my next bloods show. 🤞🏻To be honest as long as it continues to suppress the disease I will put up with it, work with it and count it a fantastic success. Good luck with your regime.
That Rucaparib has some high milligrams with it. The niraparib( Zejula) is 300 mgs. on the high side. I am on 200 mgs. because I weigh under 170lbs. I get tired easily too and have trouble with constipation. It will be interesting to see what my doc will do next. Take care, I’ll keep you in my prayers 🌺
Thanks for your message, ElayneZ. I will be waiting for the dr. to contact me.
I was diagnosed with 3c/4a HGSOC in May and am coming to end of my chemo on 21 Oct (yea!!). Initially they were going to put me on Avastin as maintenance but because it’s an infusion and requires a hospital visit they are putting me on a PARP instead so as to avoid hospital and Covid exposure. It was the nurse who told me this rather than the consultant.
Congratulations nearing your last infusion later this month! I have two more so will finish mid November. The PARP option is good since as I understand they are daily oral tablets. I don’t know which PARP yet but was told it would be one of three. Again congratulations!! 🎈
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