English Community

Hello 

I am new here - I've been reading people's post and gaining a lot of information.  I feel familiar with some of you now through your posts - this is a nice part for me.  I am HGSC non BRCA and HRD negative (probably - still waiting for tumour assessment results from USA) 

I was diagnosed in March and had a full hysterectomy etc in April.  I  will be doing my last of six chemo at the end of the month  I’m looking for  information  so I know what questions to ask my oncologist  about non recurrence drugs and follow up   

I don’t see a lot of non BRCA people- is anyone in a similar situation as me ? 
Thank you . 

-------------------------------------------

@pepperbee hi and welcome.  I just posted this evening about needing to start talking about the post chemo meds PARP inhibitors.  I too don't have the brca gene so suggested to me today that I will need to decide if I try these meds or not as there is no real evidence that it prevents a recurrence or not.  I go for my 5th treatment on Thursday. And then 3 weeks after that will be my final one.  I just had my surgery 4 weeks ago after 4 rounds of chemo.  Will be looking for insight in the coming days and weeks to figure out the pros and cons of this treatment for us non brca ladies.

-------------------------------------------

Thank you @meinvan and @ellie for your replies 

I will be looking up niraparib and making notes.  I appreciate the drug name.   I may have misheard one of the PAs  but I believe she told me that there probably wasn't any drug I would qualify for after chemo  so I feel a bit vulnerable and i need to do my homework   Such nice information from Ellie that she has had no recurrence  

As @ellie said, the HRD testing is done in the states - I believe the company is called Myriad (?)

I was told that the government used to pay for later stage testing but that the funding has recently been withdrawn.  

Thank you agin for your replies 

@pepperbee from the notes I've seen my doctor was looking at niraparib too.  Her notes mentioned there was no nurse doing hrd program, so I guess she is the one to help facilitate testing but I guess in bc we currently don't have one to do that.  So I'm not sure how or if mine will be tested for hrd.   Not sure how that affects my decision on whether or not to take this med or not.

Hi @pepperbee and welcome to the forum. I'm so glad you have received responses to your post. As you can tell, the Teal Ladies here are a group full of wisdom and a desire to share with each other. 

As for your question, while I'm certainly no medical doctor, my understanding is that Niraparib (Zejula) could be an option. You don't need to have a BRCA gene mutation or be HRD positive to take this drug. Your oncologist is definitely the one to discuss this with. My understanding is that (again I could be wrong so please validate with a medical professional), that you also need to have responded well to your chemotherapy too. Again, an item for discussion with your oncologist.

Also, I wanted to recommend, if you haven't already done so, getting a copy of the "Ovarian Cancer Canada Patient Resource Guide". I've attached a link. It's a GREAT book with lots of information. It's available in English and French and also in an online format. When I was diagnosed last February and discovered the OCC website and this guide, I had so many of my questions answered. Then when I found the OVdialogue forum, even more information became available (the Teal Warriors are the 'boots on the ground' resources).

https://ovariancanada.org/resources/support-resources

I hope this is helpful and please keep us posted on your journey. Wishing you luck as you enter into this next phase.

I believe that I don't have access to hrd testing currently, is there somewhere private to get this done?

@elliethats kind of how I feel I want to be Ned for as long as I can.  I'm scared of not taking the drug and having a recurrence but I'm also scared of taking the drug and having a recurrence too. And then of course we have to worry about when the 2 or 3 years of the drug finishes….then what?

@Meinvan it is a lot to ponder. I'm one year into Lynparza (Olaparib) and I don't think I even hesitated when my oncologist said it was the next step. To me it was kind of like, okay I've had the surgery, and then the chemo and now the next thing you do it the maintenance drug. I was just learning at that time a year ago, how fortunate I was to be able to have it as an option. I was worried whether I could handle the full daily dosage (so many people can't), and the side effects. Plus I can only currently take it until August, 2026. So yes...there are things to worry about however try to take each step one at a time. Try to breathe and not be overwhelmed. Just think of how far you've come already!!!!!!

@Alwayslearning I agree I don't think I have anything to lose in trying the drugs and well if they don't work or cause too many adverse effects we can always titrate or discontinue.  

@lbarr72 thank you for sharing your journey. For every story I read, there is a reminder of the challenges that we each have and continue to face. I wish continued NED for you as you progress!!!!

Hi @ellie thank you for sharing your story. I'm BRCA-2 positive and am 1 year into taking Lynparza (Olaparib) at the maximum daily dosage. Your comment on "reacting with desperation when faced with not being able to take Niraparib" is a reaction I've heard of before. I share in your opinion that I want to have as much support for NED as possible for as long as possible and will take the Lynparza for as long as I can, if it continues to work. I know I will face the two year threshold in August, 2026. Right now I dread it however I like to be optimistic that as research evolves, a lot can change in a year and perhaps there will be something new available and/or the timelines for taking these drugs will be extended (if there's been no recurrence). I am also aware of individuals who have not reacted well to Lynparza e.g., horrible side effects and have either had the dosage reduced and/or had to stop completely. Some of them were thrilled to be off the drug as they felt so awful while taking it. So there are definitely many sides to this one.

As always, it's a personal decision however if an option is available, it's nice that we can at least consider it. I know that not everyone even gets to that stage which always makes me sad. I want maximum survival against this horrible disease.

Thank you again for sharing. Also I wanted to say congratulations on approaching 3 years NED in December. 🙌

-------------------------------------------