Lynparza / Olaparib - what to expect

Alwayslearning

Hello all,

I will soon be transitioning onto Lynparza. I'm wondering what people have experienced with the drug specifically side effects, and how they've managed those including working with their medical team to manage dosage amounts etc. Also curious if anyone has taken it for longer than 2 years (that's the recommended max timing per my oncologist).

Thanks in advance,

Always Learning

Strongwoman

@Alwayslearning I have not had to take this line of treatment but know several of the ladies have. I am sure they will weigh in as the days go by. They will be a wealth of info for you as you begin your journey with your new treatment regime.

FrogProf

Hello! I also have a question about Lynparza / Olaparib. I was on niraparib (Zejlula) for several months, but I learned last week that I can't go back on it. We have pretty strong evidence that nirap. was doing too much damage to my kidneys. (I have a pre-existing kidney disease, so impaired renal function was always a concern.) My gyne-onc. is making a strong case for olaparib, and there are multiple possibilities to gain access to it, but there's no way to know whether it will help me. I tested BRCA negative, but my tumor tested HRD-positive. Has anyone else made this change?

Strongwoman

@FrogProf Sounds like you have some choices ahead of you that you are navigating. To be clear, your last statement:

"My gyne-onc. is making a strong case for olaparib, and there are multiple possibilities to gain access to it, but there's no way to know whether it will help me."

Curious if you could explain a little better to help with your line of questioning. I do believe that it is considered a standard of care drug and readily available to many, as to whether it will help you or not……..this is a question that plagues many of us when we are making decisions. Are there some pros/cons that are applicable to you as an individual case that may help to sway one way or another? There seems to be some hesitancy in your question and perhaps there may be other factors to consider when looking at if it would or would not be a good course of treatment for you or not. I guess your pre-existing kidney issue would be one of them. How are they monitoring that for you? I receive mine via bloodwork to determine what my kidneys are doing. I denied (early on) to have a double nephrostomy and now my right kidney is "severe" and my left kidney has changed to "moderate" in the past few months. My bloodwork comes back normal and no symptoms to worry about so I carry on as is. But those were my choices. Did you or do you have something similar to face regarding your kidneys?

I tested BRCA negative, but my tumor tested HRD-positive. Has anyone else made this change?

I, myself, am confused by this statement and don't understand. Can you help me? What change are you speaking of? You testing BRCA negative but your tumour testing HRD positive and how treatment is based because of this? OR is there another question that I am missing from your statement?

If you can help clarify, perhaps we can get some members commenting on some of their experiences to help you make some decisions going forward. How long do you have before you have to make decisions and start any type of treatment? How are you doing with all of this info emotionally/mentally? Are you doing ok physically and not facing too many symptoms currently?

FrogProf

Thanks @Strongwoman for asking for clarification. I can see how my question might be confusing after the rest of my message.

Because the BRCA tests came back negative, I'm not automatically eligible for olaparib. Once the HRD test results were finally available, I found out that the tumor tested positive for HRD, which made me a good candidate for niraparib. (I admit that although I have some sense of what a PARP inhibitor does, I don't have a good sense of how that connects to testing positive for homologous recombination deficiency.) Niraparib often raises creatinine levels without actually damaging kidneys, so my nephrologist ordered some very specialized testing. The test results strongly suggested that the niraparib was actually damaging my kidneys. That's why my gyne-onc. is making a case for olaparib. She says that because it is in the same class and works on the same mechanism as niraparib, it might be beneficial, but there's not research available suggesting that it will.

So…my question is whether anyone out there has made the transition from niraparib to olaparib. I don't perfectly fit the profile for olaparib, but the nasty side effects (impaired renal function, high blood pressure, low platelets) I had are less likely.

Perhaps my posts are more appropriate for the Treatment category, but @Alwayslearning's post came up when I initially searched for olaparib/niraparib.

Any thoughts on my situation are welcome. Thanks!

Strongwoman

@FrogProf It is hard to make decisions and wonder what "others" have done as we can be similar but have those slight differences that makes one's decision different than anothers. I feel you will take the info that you have currently and make the best decision for yourself at the time. The added issue of the kidneys will come into play for you and probably influence heavily any decision you make. The only advice I can say is "make sure you are solid with what you decide with the info you have at the time". Knowing you can always talk to your team and see if there is way to 'shift' course if need be along the way and what that might look like. I look forward to reading what you decide and how your journey goes along as time passes. I have found those internal organs are unique and they will do what they do. We have no control over that. I am forever thankful that my blood work keeps returning showing that I am staying within the "normal" range despite the progression that is raging on.

Keep us in the loop and I will be thinking of you in the meantime. Take care of you! 🤗

Alwayslearning

Hi @FrogProf,

It certainly sounds like you have some good support from your gyne-oc. While I can't relate to your specific situation, I can definitely relate to seeking counsel from the medical team you are surrounded by and weighing any available options. That certainly helped as I navigated a few twists & turns along the way.

I too look forward to hearing how your journey goes.

Sending positive vibes! 🤗

FrogProf

Thanks, @Alwayslearning and @Strongwoman

Thought I'd give a quick update… I am off niraparib for good and haven't been able to get access to olaparib. Olaparib would be for "off-label" use (because of the lack of a BRCA mutation), so I've made peace with the decision to stay off any PARP inhibitor, unless something like compassionate use, a new study, or a clinical trial opens up. I'm going to continue taking good care of myself with diet, exercise, paying attention to my body…and anything else I can do to lower the odds of recurrence.

Alwayslearning

Hi @FrogProf,

Thank you for the update. I'm learning more and more how unique everyone's situations are. I know from my short time on Olaparib that it has it's own nasty side effects which can be quite harmful based on personal circumstance. Your decision to stay off any PARB inhibitor undoubtably comes with much personal consideration.

Continue doing what is needed for you. As always I continue to send positive thoughts your way.

Strongwoman

Sounds like a great plan @FrogProf Taking care of yourself is a chore in and of itself. Glad you have made peace with your decision as well. This means that it is the right decision for you. In the meantime, don't forget to have some fun and spend time with family/friends. Take care💕