Have any Stage 4 OC patients gone into a long/decent remission after 1st line chemo (& surgery) only?
I mean WITHOUT maintenance therapy (Avastin/Niraparib etc). I would like to try without them as Avastin does not agree with me (for max. 4 months extra remission!) . And Niraparib (for possibly better tumour free longevity) seems to also come with terrible side effects. I don’t want to trade quality of life for tumour-free life if I’m going to be suffering the whole time.
Hi - my thoughts have been similar but my decision is to give the maintenance parp a chance. Some feel quite well on the parp which is very encouraging. If that’s not the case - then it can be stopped. Remember just because there is a possible side effect - we don’t necessarily get it. (I was dx May2018 - 3B. After surgery I had 18 weeks chemo and was NED 18 months. Just finished chemo for first recurrence and plan to start Olaparib parp in April.) Blessings to you on your decision!
Good point. Maybe low dose Niraparib might work & not make life hell. But I think I’d just prefer to go NED & see what happens & only go onto drugs after recurrence. I kind of want to maximise time drug free. And there seem to be a fair few st stage 3&4ers (inc yourself) who get a decent bit of remission or even a longish (have read about a lot of stage 4 getting anything from 4 up to 10 years NED one without those drugs) one. I‘m 44 & fairly fit & feel optimistic about trying this, even if I’m completely deluded 
It is your decision. I absolutely understand - both times I finished chemo, my thought has been ‘I just want my body to be drug free’! The parp was not offered when I finished front line Oct 2018. So that it has been now - and I’ve read so many positive parp reviews - and knowing I can stop if even a lowered dosage is debilitating - well, that’s how I made my decision to give it a chance. It’s your choice - trust your instincts.
Hi EllaI had this debate too before opting for Avastin. I did have some side effects but felt so much better than I had on chemo, they were more the irritating variety.
If I was in your shoes I think I would try to do as much research as possible on the two options. Speak to the helpline and to your oncologist... even get a second opinion. For example, you don’t say if you have a BRCA gene fault... if you do the Parp inhibitors stand a good chance of working as they were created for BRCA carriers. If you don’t then you might think the cost/benefit is potentially more questionable.
Get all the facts before you decide xx
Thanks Lyndy. I wish I had tolerated the Avastin better but it was awful so I don’t see that as an option anymore. Although maybe Avastin combined with chemo has worse side effects? Yes I need to research these drugs much more thoroughly. I think you are also right about me looking at efficacy of PARP inhibitors for patients without the BRCA gene.
For me Avastin with taxol & carbo had more side effects than it has on its own. With the other two drugs I was very hoarse for a full week - virtually no voice at all. On its own I have tender feet and ankles - although they seem to be better now that I’ve started running again! - and constant sniffles. But different people, different effects and different judgements so you have to do what’s right for you.
Solo Avastin definitely easier than combined w the harsh chemo’s. I’ve been on Avastin-only for a Loooong time. Keeps my numbers down and my inoperable tumor from growing. Good luck!
I have just completed 18x18weekly Paclitaxel, feeling great & looking for either a trial or maintenance treatment!!! After my CT scan best can hope for is stabilised again, then left for ? Till it kicks off again!!! Don’t want to wait as have done twice, any suggestions? Iside
I’ve wondered similar - although from a different perspective. I’m nearly at the end of my year of avastin, and am very scared of the idea of coming off all treatment and just waiting for the cancer to come back! Thank you for asking the question
I went off Avastin and wish I hadn’t because I had a recurrence. As long as it works, your body tolerates it, and your Onco is on-board, I wouldn’t be so quick to stop. Just my opinion.
My body wasn’t tolerating it, that was the problem. I had horrendous bowel pain & problems & could barely walk plus I ached all over. How could I continue like that for 15 months with the maximum benefit being 2-3 more months tumour free?
I was originally told I’d be on Avastin for a year - but I must ask in my next clinic appt whether they’d be willing to continue it. Part of me would like to see if (what I think are) the side effects would go away if I wasn’t on it, but most of me is willing to do whatever I can that’s bearable to stave off recurrence! Since the foot and ankle issue has been the worst, but that’s getting much better now I’ve started running again, I’d be happy to stay on it if that’s possible...
I’ve been on it quite awhile. I do have foot neuropathy and runny nose etc, but it hasn’t been bad. I was getting an infusion via port every 4 weeks, now every 6. Onco reduced my dose and my CA numbers are staying low.
Oh the runny nose! I had a sinus headache for 4 days which finally cleared yesterday afternoon. Not agonising, just there. Fortunately my nose has been almost normal today, which feels so unusual now!
Hi Ella, I was diagnosed 3C in 2017. After dose dense chemo, was offered Avastin and opted not to take it (chemo took a toll, could not imagine any more drugs or side effects). I have been NED since October 2017 with a stable CA125 (was 2056 when diagnosed, 650 after surgery and my nadir was 10...up now to 47, but no evidence of disease in CT/PET scans or in any of the follow up visits). No way to know what happens next, but I don't regret the "no thank you" choice and feel I did better without it.
I know what a difficult decision it is to make and wish you well with not only your choice but also with the long term results.
Hi Ella I was diagnosed stage 4a ovarian cancer in the summer of 2011. I had first line treatment, 3 cycles of chemo, surgery and another 3 cycles. I ended treatment in January 2012 , had no maintenance therapy and so far have had no recurrence.
I should add that I wasn’t offered any maintenance therapy but I think I would have accepted it if it had been.
Wishing you the best of luck whatever you decide X
Thanks! This is very positive. I’m so glad you haven’t had a recurrence. Long may it continue.
Hi Ella , Just thinking it’s the people who’ve had chemo / surgery who seem to get the good remission with no further treatment. Rather than just chemo.I would like to be corrected on this if I’m wrong please anyone??? Also I’m thinking if you have a break now will you have the PARP in the bank as it were for later . ????
Hope you keep well whatever you decide
Jennifer
I was 6 years in remission the first time, then 5 years. Stay vigilant w check-ups.
Hi Jennifer - I was dx May 2018 - (3B) - I had surgery and then chemo. I recurred March 2020 and had 9 months of chemo. I will start Olaparib PARP in April. Elayne
Just wanted to say good wishes for Olaparib , just persevere at the beginning. It has given me a good year , although spent in lockdown unfortunately!!! Miracle drug really Best wishes
Jennifer
I can’t say. Maybe someone else can? I had debulking surgery in Nov & am now on 5/6 chemos (I’m in germany & this seems to be standard although I know in the U.K. the chemo seems to happen either side of surgery.) Yes. you’re right, I can wait to decide about the PARP a bit later.
I'm stage 3 ,had 6 cycles of chemo then surgery ,all visible cancer removed ,then 3 cycles of chemo ,I was NED December 2019 , no maintenance drug offered, recurrence 9 months later ,6 cycles of chemo ,partial response , due to start maintenance drug within next two weeks, I can't help thinking if I'd had it in December 2019 would I have had a longer remission ,I'm BRCA negative ,I'm dreading it but its my only option ,we're all different ,this disease is so unpredictable ,whatever you decide I wish you well .xxCheryl
Hi Ella1717, I can totally relate to your concerns hun, I too am stage 4, had 5 chemo then debulking surgery then 2 more chemo the last was 28th September, I am braca negative so consultant gave me anastrozole to try which may or may not work and if I get any side effects stop taking it (this was Feb 2nd) and my scan showed disease stable. Due to horrific side effects I read about decided notto take the drug. I get horrible hot flushes and joint pain as it is so making this worse I could not face.Well I have just been discharged from hospital after 6 days, I had extreme constipation and haddened had a bowmovement other than overflow for 2 weeks, my stomach blew up like a basket ball, so tight and painfull. Ended up having 5 litres of ascites drained from my tummy and finally yesterday had my first proper bowel movement but tummy still massive and sore today.
Just spoken to my cns nurse as my scan was discussed at yesterday's mdt a d they can see small pockets of fluid, thickening of my bow some lymph nodes slightly bigger than last scan, all these little things add up to looking like the cancer is waking up again. Got to wait till end of this month to see my consultant as his clinic is choca block then he is away but am assured the few weeks wait won't make a difference then I can back into some treatment.
I can't advise what's best for you lovely I'm afraid. I have been told this isn't cureable and highly likely to have reoccurance but I really didn't think it would be so soon. I pray for please of mind mainly, I just want to be out of pain and feel as well as I can for as long as I can, it's very upsetting but if I can just get please of mind to deal with it then I will be able to get on with my life and just take treatment as it comes.
I hope you too get some peace of mind, speak to your cns about any concerns you have a d best of luck to you hun xx
Sorry this was so long it's all very raw at the moment.
I was diagnosed in 2000 with stage 4 and had debulking surgery and6 months of Taxol and Carboplatin which did the trick but was awful.When I recurred in 2003 I was persuaded to have chemo against my better judgement and gave up after two treatments because of side effects. Since then I have had 3more surgeries 2004 2007 and 2011 as I could tolerate that better. Since then bizarrely I have been in remission but with ongoing problems with stomas.I am an unusual case because my tumours came back one at a time .Iwould never have chemo again but it is for each individual to make up their own mind.Don’t be pressurised by the medics or family.Good luck Vivxx.
I was in the same place as you back in August last year - hesitating, not keen on taking a PARP inhibitor after chemo and all the drugs. But the way I decided in the end was, I will try it because its being offered now -if I don't try it, it won't be offered again, and its pills to take at home. So if I felt awful or got horrible side effects, I could just stop. As it happens, although Niraparib does interfere with my sleep and I have to take more movicol because of constipation, it was fine. Except, it puts my blood pressure and heart rate up to unacceptably high levels, so I have to keep coming off it to get that settled, and take drugs to control the BP and heart rate. Were it not for that, the only thing I'd notice would be reduced sleep (meaning a nap or rest in the afternoons) and a greater inclination to constipation. And when I am on it, it reduces my CA125, when I come off it here and there, my CA125 rises, so it does work for me, its just a pain sorting out the BP/heart rate thing, trying different drugs for that. Not everyone gets the blood pressure problem either... Its up to you, but I'd say give it a go, what have you got to lose, really.... you have the control to just stop if its horrible. I'm stage 4b, if it matters.
Miriam
Good point. I can start & stop again. I’m sorry you have issues with it. I’m fearful of the constipation because my stoma reversal is so recent & blockages are so much worse than they were with my ‘pre-stoma’ bowels. Also I need my sleep, and get depressed & grumpy when I don’t get enough, so the thought of months or years of insomnia scares me a lot tbh. It’s that quality of life vs tumour free survival trade off that bugs me so much. But like you said, I can try it, I guess & see. I wish we didn’t have to make these decisions & also that we could know whether these drugs are really worth it or not.
Its not really insomnia - I go to sleep fine and sleep for about 5-6 hours, then its just sort of dozing; without Niraparib I'd normally sleep for 7 or 8 hours, albeit with getting up for the loo a couple of times. I do tend to have a little snooze in the afternoon when I am taking it, but be assured, it's not like you're laying awake totally unable to sleep all night. As for constipation, I think some women get the opposite with it, but I just take movicol two or three times a day to keep things moving.
Miriam
I was 3c in October 2017, full surgery November 17, 6 sessions chemo, then am started an immunotherapy trial May 18...recurrence December 18 😢 trial stopped, 6 more chemos, and then Niraparib since April 19. I have had no side effects and last check my CA125 was 10 😁 Tough choice for you, but thought I’d let you know my story x
Hi. You’re dealing with a gamble here. If you choose no maintenance you could be one of the lucky few who is cured and never has a recurrence but odds are you’ll have one sometime within two years. I refused Avastin because I wanted to be treatment free and my remission was nine months. I’ve been on Olaparib for almost a year and I have struggled with fatigue but I feel like it’s been a game changer for me. I still had tumor left after chemo and Olaparib got rid of it. I am somatic brca1 positive and have a PALB2 mutation. The side effects are tolerable but you can always wait and try the PARP later if need be.
I am stage 4 and am currently having 3rd line chemo. My first remission was 14 months from treatment end, the second was 18 months. I decided against a maintenance drug because I wanted to go into next inevitable chemo after a break from drugs and hospitals- but it’s all a bit of a gamble. If I had the brca mutation I’d be more inclined towards a parp inhibitor.
I have been very well and active between treatments so I would probably do the same again if I could go back and choose again. I’m hoping to have another complete remission this time but I’m aware my time is ticking.
Niraparibis supposed to be started within 8 weeks of chemo. I'm in month 5of niraparib - first month a bit rocky, but now feel better than I did before diagnosis. Fairly insomniac anyway, but not noticed any change. Obviously your decision - but check that it will be an option later.
Hi I too am at this stage but have to wait for Cat scan results to see if am NED or stabilised, as have been twice before!!! BRAC negative diagnosed 2018, 2ops. 3chemos, am in a dilemma as don’t want to just wait for it to kick in again. Any suggestions? Would appreciate, many thanks IsideX
Hi Ella,I also had a stage 4 (high grade) diagnosis.
I couldn't have a maintenance drug (Avastin) because I had had a fistula. It was good in some ways to have the decision taken away because I have had a clear scan after 6 months of feeling really healthy and well. It's early days and all our bodies and cancer journeys are different.
Wishing you the best outcome with whatever you decide. X
I think you’re right with your priorities - out of pain and feeling well, and peace of mind. I hope you get some real relief soon x
Has anyone been on Niraparib twice?
Waiting for new treatment to start getting anxious
Info request on Non Brca - Parp inhibitors Olaparib, Niraparib etc trials?
Why do they stop Avastin?
Update to confused and in pain
