Hi again, I've got an appointment with my mums consultant tomorrow. I want to ask about her her second line treatment and if there is anything else that she could be trying. Has anyone tried parp inhibitors with positive results? Or any other medication alongside chemotherapy?
She has started carbo/Gem last week.
Hi Raquel. Im currently on a trial for Olaparib, have been since January 2014, currently NED since August 2013.
Hi was this given after a reacurrance or as first-line treatment?
Its a trial. the third ive been on. Ive been on Olaparib following a second recurrence and after completing chemo.
What other trials have you been on? I will definitely mention Olaparib!
Originally when I was first diagnosed I was on a trial for Avastin, following my first recurrence I was on a trial for Cederanib and now Im on Olaparib x
Thank you I'll mention then
Raquel, glad you are having success. I am in a trial for Olaparib also but had having to have a scan every two months. Have you had to do this?
Hi. originally yes. Im now on checkups every 12 weeks, a scan every 24 weeks. How long have you been on yr trial. Kathy xx
Hi there, yes do ask it will not hurt to ask. Has your mother being offered a maintenance drug yet? If not then do ask if she can be put on one. Also has your mother been tested for the BRAC gene? If so & she is positive then there are more options on offer. I have read that some woman that are not BRAC positive are being offered the parp inhibitors.
So you don't forget write all the questions down for tomorrow. I know how easy it is to forget the important questions when there is so much to take in. Good luck let us know how you get on take care Cindyxx
Yes she is BRCA positive so am I. What options are there for BRCA positive patients? And no she has never been on any maintenance drugs. She has only been on carbo/taxol for her first line treatment and now 20 months later on her first reacurrance they want her to go on carbo/Gem.
Hi there, first I want to say how sorry I am for you & your mum because it's a such shock it find this out & a double shock that you are both BRCA positive.
All I can tell you is my onc said I would be better off being BRCA positive because there is more treatments available. On here ladies that are BRCA positive seem to be doing quite well maybe because of the drugs on offer.
I am not BRCA positive so far I haven't been offered a parp inhibitor.
As for a maintenance drug like Avastin yes ask for it.
The best person to answer your question is Katmal she has been there & like you is BRAC positive. She is also one of the most positive adviser on here.
I want to wish you & your mum all the best for tomorrow take care Cindyxx
Hi Raquel, was interested in your post as my mother has been told she will be able to have a parb inhibitor when she next has a recurrence. She was 1st diagnosed with primary peritoneal cancer in 2012..chemo & surgery. 1st recurrence was 2015...chemo. As her sister passed away from the same disease many years ago I suggested genetic testing. Turns out my mother has brca1 and I have just found out I also have it.
It was only then we were informed that people with the brca mutation often respond better to chemo. My mother responded well both times and has been on avastin (maintenance) drug for the past 15mths or so. Still no evidence of disease and she is enjoying her life. They are scanning every 3 mths and monitoring Ca125 every 3 weeks when she gets her avastin.
The consultant informed us that having the brca mutation also means she will be eligible for a parb inhibitor. She will have to have chemo when disease is evident again but will prob only need 4rounds...enough to prove that the disease responds well chemo and then she can start olaparib. We are in Ireland so guidelines In U.K. Possibly different. Hopefully it will be available for everyone with this disease soon. Treatments are changing all the time. It's amazing to think avastin wasn't even available when my mum was first diagnosed and now we have parb inhibitors.
Ask plenty of questions to oncologist to ensure best treatment for your mother.
Best wishes to you both x
Also just want to say my mother was on the same chemo as yours for first line and second line. She found carbo/gem combo much tougher as she kept becoming neutropenic and often had to miss the second week. It was a scary time as we worried missing some of the doses would mean a poor outcome but it didn't. So keep faith. It will be difficult but she'll get there 🙏
Thank you ive asked about avastin but they say it's a first line treatment and won't give it to my mum now that she had a reccurance! And in regards to the parp inhibitors they are only offered at third line. It's devasting to know you just have to wait it out.
That's weird about the avastin as Mam got it after 2nd line but then it wasn't available the first time round. She will get parb after 3rd line. I suppose everything has side effects even the avastin and parb so at least she will be able to enjoy her remission drug free. Really crap to have to go through chemo all these times but as nothing is curative as yet it's good to have options available down the line especially since thee seems to be good reports about parbs.
Did your mum reach NED status after chemo alone?
Yes both times. Ned after first line...2.5 year remission. Ned after second line but were told at that point that although the scan showed no cancer and the Ca125 levels were under 10 that there would always be tiny microscopic cells lingering somewhere. They basically said once there is a recurrence of this disease it's not curable and to view it as a chronic disease that will raise its head every once in a while. Chemo needed to reduce it again. My understanding of avastin is that it doesn't destroy the cancer cells just tries to obstruct or slow the blood supply to these cells thereby slowing things down. (Having said that my Mam had swollen lymph nodes evident on scan last august...even more 3months later. They were watching them closely. The most recent scan..no sign of these lymph nodes. Ca125 had been rising slowly since finishing chemo and on avastin 15mths ago. Only in low 200's now. On a couple of occasions it even dropped by 20 or so. ). I don't know much about parb inhibitors next or the reason for holding them until 3rd line is complete.
Did your mum have any other tumors visible or was it just the lymph nodes?
They just mentioned that there were a few swollen lymph nodes in the abdominal area near the aorta so would have been too risky to biopsie and they were prob too small at that stage. He just presumed they were cancerous given her rising Ca125. The wall of her large intestine showed thickening too but no mention of it on last scan report. Recent colonoscopy was clear.
At the time of first diagnosis, there were cancerous tumours throughout her pelvic area with a large one on her omentum and some which had invaded her colon. She had full hysterectomy, omentectomy and a bowel resection.
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