Hello lovely helpful ladies. My mum has just finished six months of chemo, this is her third lot in four years, her ca125 was a thousand and something it is now 125. She is non braca she had niraparib previous to this chemo which stopped working, so any ideas what she could go on for maintenance really love some help. Xxx
Hi, has anyone mentioned Avastin?
Hi Can't really offer advice but wanted to wish you and your Mum well. As this is a global group you do sometimes get advice is given re meds/treatment etc that may not be available in your country, so maybe ask where contributors are from . I am waiting to find out where I go from here as 1st line treatment and maintenance has not been affective. I am in UK. Good luck. Xx
Hi Ali,Like Katmal says, you and your Mum need to ask about Avastin, it’s not available on NHS if you’re in UK but your oncologist can apply to the Drug Fund and if this was you’re Mum’s first line of chemo it should be funded through that.
If nothing is offered try to persuade your Mum to get a 2nd opinion as new drugs are becoming available every year.
Good Luck to you both🍀
Sending hugs, Iris 🤗🤗
Sounds like your mum is in a very similar position to me. I am non BRCA and niraparib does not seem to be doing all I had hoped. They think they might take me off it after next scan. So disappointed. I don't know what the next option is for me either. A reply says Avastin is not available on NHS but it is in Cumbria, UK, where I live. However, I cannot have it because of cancers in lymph nodes near heart and aorta. I am going to seek a trial in the hope it does some good at holding back the cancer's growth. Have you sought a second, or even third, opinion? It might be worth trying. All good wishes, love and hugs to you and your mum x
Thank you for all your reply’s wish I could help you all get rid of this you are all doing amazing supporting each other and getting through x
This is mums 3rd lot of chemo is four years she has done amazing would avastin be available now ? as this is her third lot of chemo in four years. I’ve asked her oncologist a few years ago and he said no it wasn’t available for her. if we could get her this it may really help her do you know what I need to do please love ali xx
Prescribing protocols have changed a lot in recent years, so it's definitely worth asking about it again. There's a FB page for parp inhibitors and trials, which might be worth your investigating - I've seen a good few ladies on there go to a second parp recently. x
Thank you so much without the help of you all I would be lost xxxx
I see others saying that Avastin is/isn’t available in their areas. I just wanted to say that it is available in Gloucestershire, Herefordshire, and Worcestershire, ao it’s definitely worth asking.
Another thing you could ask about is HRD testing if you haven’t already had it. It’s new, done only in the US, and takes several weeks to come back, but is now fully funded by NHS. If you test neg for BRCA (the usual reason to be prescribed Niraparib) but you test positive for HRD, you should qualify for Olaparib (which used to be be prescribed for BRCA+ only).
Hope this helps, best wishes
Annie
Hi Annie that’s a great help we having an appointment with mums oncologist so will see what he says, this is mums 3rd lots of chemo sessions in four years do you think you can have a avastin after fours years as I know you have to meet the criteria which seems terrible if it’s someone’s life. Thanks you so much for your reply Ali xx
Caelyx as maintenance
Maintenance therapies?
PARP as maintenance
Maintenance meds
