Hello ladies,
I'm wondering if anyone can help me understand what the maintenance treatment options are for women without the brca gene for high grade serous OC? And how soon should they be using something, if anything?
Are there any research efforts to make a maintenance drug for these women?
Thank you 🌻
Hi I am the parp inhibitor niparapib for maintenance 5 weeks in and I do not have the brca Gene. I am stage four diagnosed 2012 and have had four recurences . I am afraid I don't know the criteria for this drug.Best wishes Pam
Thanks Pam, it sounds like you're doing well, that is great. What was your treatment during recurrence? Are you in the US or UK? Thanks very much.
Hi initially was on carbo\ taxol but I had to stop the taxol owing to really bad nerupathy.on second recurrence it was carbo\gemcibide followed by Avastin for maintenance which after16 months had to stop owing to poor kidney function. I was then on carbo/ caelyx, and then carboplatin for four infusions a break of six weeks when I started the parp inhibitor. I am in the UK. Pam
Do you still have neuropathy and how do you get it out of your system - presumably your doctor or palliative specialist is helping you with it.
Yes it has never really gone completely it kind of dulls between treatments, I think I have learned to live it!
Hi, i am also on niraparib...one week in. Seems to be going ok. I don’t have the BRCA gene.
Hi, my sister is like you high grade no brca gene. She had chemo surgery and more chemo. Just finished her front line chemo regime. She has been cancer free since her surgery in may. Gyn oncologist told her that here in states, FDA has not yet approved parp for non BRCA ladies who have not had a reoccurence. So she is on maintenance Avastin every 3 weeks. Hope this helps. Xoxo nancy
Hi Nancy, thank you for your reply and so nice to hear your sister is doing well. I didn't mention before but my question is for my mom actually. We're in Canada and the avastin is only covered if surgery is unsuccessful. If it's successful then they don't cover it. It's very strange but we had said we'll pay for it and oncologist said it may be good just to save it for later on so she's on nothing now, she has had good results otherwise. I wonder if in the US it is covered or do you have to pay?
Its so confusing.
Thanks.
My understanding is that there's just been an amazing result from a Phase 3 trial of Olaparib as firstline maintenance but it only included people with BRCA mutations. Up until now they haven't used PARP inhibitors until there were multiple recurrences so this is a major breakthrough. It probably means it will get approved for BRCA positive people soon but they are also pushing its use for non-BRCA subjects. Otherwise I think Avastin is the only option for first line maintenance. xo
Hi, yes I heard the same news which is very promising for that group of women but am disappointed that it's not an option for the others. The oncologist explained to me that Olaparib would not work on other women because it acts on suppressing the cancer cell from repairing itself, causing death of the tumor / cell. However he told me this action has only been confirmed in brca gene mutations. I felt upset to hear that since it sounds like it's not a matter of approval, but that it wouldn't work. Has anyone heard a different explanation?
When I heard this I knew that so much more research and progress is needed for ALL ovarian cancer types.
What are the timelines for avastin as first-line maintenance? Anyone know?
Would it be right after chemo? Is it too late to get on it months later if there is still no recurrence?
Might be a question for the doctor but I know this group is so informative so am asking away.
Thanks for replies 🌻
Hi. I do think there is a push to expand the use of PARP inhibitors by combining them maybe with immunotherapy. As far as Avastin goes I think often it's used along with first line chemo but then as maintenance though you might be able to get it just as maintenance. It works best on people who are worse off (sub-optimal debulking or ascites or Satge 4).
Yes hopefully the push for PARPs and immunotherapy will speed up. The way they make new breakthroughs is through trials that succeed. Need more trials and funding all over.
The oncologist also explained to me that the cancer cells may mutate so at one point they might be brca negative but then it may change in some way. Not always, but possible. He spoke about tumor testing coming up that will try to identify the cancer tumor's dna I think, and a specific way to treat each patient. I suppose that's the immunotherapy? Being in Canada things go a bit slower with approval so am also curious about differences between countries.
Hi Luci22 where abouts in Canada are you? I am in Vancouver. My mom also has HGS 3c, we finished frontline in Sept.
We are just outside of Toronto, treated in Mississauga. Sorry you're also going through this. My mom was diagnosed July 2017 and her frontline finished in March. Have they offered any maintenance for your mom or next steps?
No maintenance. They are going to do a watch and wait approach and said to keep an eye out for symptoms with a check in every 3 months. They don’t regularly check CA 125 for the sake of patient anxiety. Which is super scary for us!
Same procedure here, the watch and wait, though they are checking CA125 every 4 months. Sometimes you can ask your GP for the test and pay out of pocket maybe. Hope your mom is feeling well and can enjoy herself now that her treatment is over.
I'm halfway through 3rd line chemo and BRCA negative and I've been told that as long as chemo is successful, Niraparib would be available via the cancer drugs fund and Olaparib via a clinical trial (I'm at the Christie). Unfortunately I may not be able to go on the Olaparib due some other meds I'm on for a lung condition. I would have preferred Olaparib as there are slightly less side effects according to Prof. There is also a trial ICON9 svailable to those after succesful 2nd line recurrence, which is a combination of Cedinerib and Olaparib for both BRCA positive and negative ladies. There are also treatments available such as letrozole for those with oestrogen receptive tumours, not forgetting alternative therapies.
Good luck to you. Hope this helps. 💐
Thanks for that comprehensive survey, Sandra. Hope you are doing ok. I'm being scanned and reported on this week - down at the Christie tomorrow and Thursday. Bit anxious because of lymph node activity so interested to read what might be available treatment wise further down the line. xx
Hope this week goes well Christine. I was there last week and you get positive news. My ca125 has gone down from 2000 to 509 and my tummy is much less painful do I'm guessing it's working. See you soon. Sandra x
Sounds like you are going in the right direction - fingers crossed!
Oh interesting, so it seems like there are several options available, depending on the situation of each woman, that is good to learn. I have now heard of Niraparib and Olaparib and the ICON9 trial sounds somewhat familiar so my learning continues.
The only maintenance my mom has been doing is from a "natural standpoint". She's taking baby aspirin once a day (with pantaloc to protect her stomach) - the idea was taken from Dr. Du's posts on NSAIDS - we first consulted with family doctor. She's also been seeing a naturopathic oncology doctor doing IV vitamin C , mistletoe injections and some supplements. This is not cheap either. We don't know what works or what doesn't work but trying to do what we can since no other medical therapies are really available for the non-brca patient population after firstline treatment. I'm am glad there is this phase 3 trial going on , hopefully with great results. Being positive and having hope and support is very helpful too, for example this great site is full of that.
I also think ovarian cancer needs a larger spotlight overall. I would love to see more. Ovarian Cancer is not just one disease as I'm learning, but a layered one that is multifaceted. In Canada for example, Ovarian Cancer Canada has various campaigns to raise awareness and funds. I feel like there needs to be so much more on an enormous scale. During September, Ovarian Cancer Awareness month here, I was annoyed and disappointed to see NO publicity for this cancer on my local tv. Not one commercial. It's possible I didn't catch it at the right time but there wasn't much. I was actually seeing breast cancer awareness during OC month. The ELLEN show was airing upcoming show announcements about breast cancer awareness during September when it was Ovarian Cancer's month. Actually, on a recent Ellen show (about fundraising for breast cancer) the actress Ellen Pompeo incorrectly gave advice on ovarian cancer screening. Dr. Jen Gunter had to correct her on twitter. Here's that headline and link: "Ellen Pompeo gives terrible advice about ovarian cancer screening on The Ellen Show" drjengunter.wordpress.com/2...
(I think I will post that for all the ladies in another post )
I rambled a bit there, sorry about that! But thank you for the information you provided and that you took the time to write. All the best with your current treatment. Hope you feel well and are able to get the niraparib too.
My oncologist told me that brca neg ladies with serous g3 who have had 3 lines of chemo and a six month gap since their last platinum Therapy, are eligible for niraparib. So worth discussing
LA xx
Glad your mother is taking baby aspirin. Best wishes to her
Eileen x
Parps and Caelyx/Carbo???
low grade serous oc and parps
BRCA testing now available for free in Australia*
Brca test
