Need a bit of advice on treatments going forwar... - My Ovacome

My Ovacome

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Need a bit of advice on treatments going forward.. avastin vs niraparib?

Newbery3 profile image
27 Replies

Hi all 🥰 seen my oncologist today and she's happy that im Ned after my operation last month but has told me i need to decide now whether to go ahead with avastin on my 6th chemo for first line treatment for 18 cycles via intravenous in my chemo unit every three weeks or start niraparib 8 weeks after last chemo for 3 years tablet form. . Now ive read up on both and have no clue whats best! If i have avastin and then reoccur after 6months at the end i can have more chemo then niraparib but if i have niraparib and reoccur i can never have avastin but saying this it all depends on how if and when i reoccur! 🤯🤷‍♀️lost!! I dont even want to think this far ahead lol. Please help pros and cons wise. Lots of luvs ❤️ x

27 Replies
kristinaapril profile image
kristinaapril

I don't have any experience with any of those drugs. My mom was on Avastin for her first reoccurrence and ended up with two rare side effects from Avastin - nephrotic syndrome and then PRES. She ended up not tolerating Avastin well but there are plenty of women that are able to manage the side effects.

I'm from the US and recently niraparib just got removed from approval for 'heavily treated' patients as it had a 'potential detrimental effect' on overall survival rates. I'm not sure if this will be translated into practice over in the UK but it's worth thinking about that as well.

I hope other ladies are able to give you more insight!

Kris x.

P.S. Here is the article about Niraparib in the us, incase you want to look for yourself.

onclive.com/view/physicians...

Newbery3 profile image
Newbery3 in reply to kristinaapril

Brilliant thanks kris 👍 I'll have a read now, in yhe uk we are only allowed avastin with first line , how things are different in different counties 🤷‍♀️x

SEckett profile image
SEckett in reply to kristinaapril

Hi Newbury3

I had Avastin added to 5 cycles of chemotherapy. Then once chemotherapy had finished I went every 3 weeks for Avastin and was given a maintenance drug called Olaprib as well to take. The Olarprib was given to me 3 and half weeks after my last chemotherapy session. Sheenagh

Newbery3 profile image
Newbery3 in reply to SEckett

How did you find taking tge both drugs together? Im worried because you read so many ladies struggling on just 1 of the drugs? I've spoken to prof Fotopoulou yesterday and she's advised to wait for HRD results and then if positive take both avastin and niraparib the sane time x

SEckett profile image
SEckett in reply to Newbery3

Hi Newbery3,

I found it ok. I got a bit tired but for me it was doable. Sheenagh x

Newbery3 profile image
Newbery3 in reply to SEckett

Great thats encouraging 😅 as long as i can get on with my life and not feel like a zombie x

AusTig profile image
AusTig in reply to kristinaapril

Your reply is very interesting to me as you are the only other person I have heard of with PRES. I am finding it difficult to deal with. Also I have been on Niraparib.

Lyndy2 profile image
Lyndy2

I think this is such a hard choice for you. I did have Avastin after first line and it was ok. Did it prevent recurrence? I have no idea! I did recur but long after I stopped Avastin.

If I was choosing I might go with Avastin now and Parp in the future if needed. Then you run the risk that they might have restricted Parps to first line only.

Why not ring the Ovacome helpline? They will help you think through your options. Good luck xx

Newbery3 profile image
Newbery3 in reply to Lyndy2

Lyndy i was hoping youd reply as you always make sense!😅☺️ yes i will ring them tomorrow. Thank you 🥰x

Morini profile image
Morini in reply to Newbery3

What a great outcome, enjoy your NED. I did what Lyndy suggested. Avastin first and hold Niraparib on hand in casr of recurrence (assuming they haven't changed the 'rules' by then). I've aches and pains that I attribute to Avastin, but it's do-able for me, I'm workìng part time, riding my horse etc.

Good luck whatever you do.

Newbery3 profile image
Newbery3 in reply to Morini

Thanks for your advice 😊 xxx

Mai46 profile image
Mai46

I’m on Avastin after second line chemo (I have private health care in the U.K. ) & although it’s knackering, it’s keeping me stable. I didn’t get to NED with the chemo so I’m extremely glad the Avastin is working. I also tried it towards the end of 1st line chemo but combined with carbol/taxol & a stoma reversal, it was hard to deal with. I also read a lot of negative stuff about it, which in retrospect wasn’t helpful.

I can’t say what you should do but it sounds like you have more options further down the line if you have the Avastin. And you can always stop. It is full-on, combined with chemo but it’s easier once you have it on it’s own.

Newbery3 profile image
Newbery3 in reply to Mai46

Thanks mai , yes I'm thinking the same, i only have 1 with the chemo then avastin on its own x

Realistic profile image
Realistic

Cant tell you how happy l am for you just wonderful news, wish l could give you the biggest love & hugs . Just amazing news, as always your getting very sound advice from the brave girls on here. If it were me ld get as much advice as possible so you go down the right path. Ask your team for more info all the pros and cons l know things are improving for us all all the time. Things are looking great for you my ❤ we can and will beat this cancer. Im in Tenerife & as yet lve not got the frock but did buy some comfy flats . I will go to the little Spanish church and light the candles for us all my love & respect for everyone. SheilaFxxx

Newbery3 profile image
Newbery3 in reply to Realistic

Aww thank you Sheila 💖 have a lovely time in tenerife! I'm a flats girl too 🤣 can't wait til i'm able to fly off somewhere and just BE! X

Realistic profile image
Realistic in reply to Newbery3

Well if l could walk straight ld wear heels but lm quite clumsy when l walk use a stick, had problems since all my brain surgery. I could do with being a bit taller like 6 inchs & a lot slimmer but hey l do love my magnums. Good luck sweetheart. Your doing great. SheilaFxxx

Newbery3 profile image
Newbery3 in reply to Realistic

Yes thats right i had brain surgery too for an aneurysm in 2004! We have lots in common 🥰 also love a magnum 🤣🤣🤣

Pitchperfec profile image
Pitchperfec

Hi, my mum started Avastin in July after debulking surgery in December 21 and completing 1st line chemo at the end of May. She was diagnosed at stage 4 and her scan after chemo showed NED. She had to make a decision whether to have Avastin for 18 cycles every 3 weeks or not take anything and hope for a long remission. She decided to try Avastin knowing she could stop if it wasn’t tolerated or affected her quality of life too negatively. She’s now had 5 cycles and is doing okay. She has low level muscle aches and her energy levels are not what they used to be but she’s living a pretty normal life doing all the things she wants to do. It’s much easier than chemo. My mum wasn’t offered Niraparib so didn’t have to choose between them but it was still a hard decision not knowing what to do for the best so I completely understand how you’re feeling. Wishing you all the best. Ashleigh x

Newbery3 profile image
Newbery3 in reply to Pitchperfec

Thank you for taking the time to respond ❤ thats good to hear, i really just want to get on with my life! Im glad your mother's not feeling the effects thats encouraging x

Leniko profile image
Leniko

I’ve been on Avastin infusions for quite awhile, every 4, and now every 6 weeks. It’s kept my CA125 down and I don’t have negative symptoms. It’s been a godsend for me!

Newbery3 profile image
Newbery3 in reply to Leniko

Hi, well i was told avastin every 3 weeks, it be lovely if it was every 4 weeks sk will ask if thats an option too 😉 x

Leniko profile image
Leniko in reply to Newbery3

I would start w the 3 weeks and then, they can change your schedule accordingly. Praying it works for you! 🙏

delia2 profile image
delia2

I just want to say congratulations on being ned! The others have given you great advice. I would echo discussing pros and cons with your team and Ovacom. Are you BRCA or HRD positive? If you are I would go with Niraparib. Good luck with your decision. Xxx

Newbery3 profile image
Newbery3 in reply to delia2

My result for hrd was in conclusive but brca negative x

Alice77 profile image
Alice77

The article metioned by kristinaapril is interesting but appears to suggest that unless you have a BCRA mutation and have been "heavily treated" (what does that mean?), PARP inhibitors are useful. This is particularly important because originally PARP inhibitors were thought to be especially effective for BRAC patients. I do not have BCRA and there is no explanation for the cause, but I have late-stage Primary Peritoneal cancer. I had eight cycles of Paclitaxel/Carboplatin chemo at maximum dose, to which I had a very good response, followed by ultra-radical debulking surgery (the 9 hour op) and a further two cycles of the chemo. I am now taking Niraparib as a maintenance dose, two capsules a day, and have been doing so since April. I was told that Avastin was not suitable for me because of the surgery and risk of bleeding. As I am now, fortunately, in remission I did have the option of refusing Niraparib and waiting for the recurrence of the cancer, then having more chemo followed by Noraparib. at a later stage. I decided on Niraparib because I had had a hellish 18 months and really dreaded the thought of more intravenous chemo and also thought the PARP inhibitor might give me a better chance of longer quality of life. It is a gamble and we all have to make impossible choices about treatment because without hindsight who knows, particularly where relatively new drugs such as PARP inhibitors are concerned.

On the other hand I do think that I made a sensible decision in the circumstances. The first few months on NIraparib were not especially pleasant...I suffered from nausea and severe insomnia, and with PARP inhibitors you take them every day so there is no third week when you feel better. I still have the occasional sleepless night and nauseous morning but the side effects have diminished to the extent that for the most part I have a normal and very active life. It is different for everyone and I know others have given up on Niraparib because of the side efffects (which include a reduction in white blood cells, for which I have separate treatment via self-injection once a month) but in my opinion it is worth persevering with, although I will not know if it is working unless/ until I have a recurrence of the cancer. If it does come back I still have the option of further chemotherapy, of course.

As I have no experience of Avastin I can't help in that respect, but I wish you well for the future and hope that you do well whatever option you choose.

18Kathy profile image
18Kathy

Hi,

I was on Avastin for 3 years. It worked. Nilaprub/Zejula after Avastin did not work. I tried it for 6 months but my CA125 kept climbing.

Good luck.

Newbery3 profile image
Newbery3 in reply to 18Kathy

I've only been offered 18 doses of avastin🤔 are you in uk? Was told i can gave niraparib for 3yrs. Waiting for HRD results and see what im allowed then.X

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