New here - help!

Scared

Hi all.  Im here for my mom.  65F.  She was diagnosed with breast cancer in March 2020 at which time doctors saw a small lump on her ovary and diagnosed it as a cyst.  Fast forward to April 2021 and it turns out said cyst was a malignant tumour and she ended up with a Stage 3B Clear Cell Ovarian Carcinoma diagnosis.  BRCA negative.  Just found out that carboplatin has failed.  Looking at other options now.  Is Olaparib an immunotherapy drug?  There are no clinical trials available but oncologist did say immunotherapy may be something to consider but that it is pricy.  Any words of advice?  Im terrified. 

Fearless

@Scared I'm so very sorry for your mother's diagnosis. She is so lucky to have you in her corner and welcome to our community.  We are here to help and support, no matter if you are a survivor or a caregiver for one who's been diagnosed.

Unfortunately we're not all sensitive to Carboplatin, one of the most popular chemo treatments.  Some just don't respond at all. Others like me, lose their sensitivity over time.  But there are usually options to consider.  Clnical trials come up regularly and while there is nothing appropriate to your mother's condition right now, keep asking.  And there has been far more focus on research into immunotherapies of late so that could be an avenue for her.  If it is and cost is an issue ask for a referral to your cancer centre's financial navigator. They are incredibly helpful navigating your provincial health care plans, private plans, urgent funding and even what might be available through the pharmaceutical provider itself.  

No, Olaparib is not an immunotherapy nor is it's counterpart Zejula. They are PARP inhibitors and act in a differently way, largely as a maintenance drug to inhibit growth, but usually for those with high grade serous OVC.  

Clear Cell is not the most common of types of OVC but if you go to the search button at the top right of your home screen here and type it in you will find whatever discussions there have been on the topic. Those might prove helpful to you.  More importantly, if you haven't already, I will recommend two resources for you. Both to be found on the Ovarian Cancer Canada website: ovariancanada.org

The first is all of the information on developments in research, clinical trials and new treatments.  Some of that information could help you prepare questions for her next meeting with her cancer care team.  You will find that information under the RESEARCH tab on their home page.

The other is the booklet By Your Side that is a very valuable guide to one going through primary treatment and will also help to inform the two of you and prepare for those conversations as well.  You can go directly to https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources  It comes in both hard and soft copy. I have both.    And you might want to check out the Webinar series for any applicable information sessions.  

I am a five year survivor myself, but not cured. In fact I am now on my fourth line of treatment but still doing well lliving with this disease.  I firmly believe much of that has been by arming myself with as much knowledge as possible in order to ensure I'm well equipped to advocate for my own needs and to help make decisions informed by fact, and not out of panic.  As her caregiver, do what you do best....offer her encouragement and hope, be there when she needs to unload.  One of the hardest parts of this journey is often  feeling safe to talk about how you feel, often with those closest to you.  Give her those moments when she needs them.  

Have patience. Listen and rely on your cancer care team to offer the best options for her and to make this journey as easy and comfortable as possible.  But don't be afraid to ask questions and get clarity if anything becomes unclear or confusing.  

You or your mother are welcome to join our weekly live online chat on Thursdays at 1PM EST.  We have a great group who check in, some regularly and some only when the need arises for more immediate connection to others.  You need only sign in as usual and click on the Discussion thread TEAL THURSDAY...... to enter the chat room and participate. But you can also view previous chats at any time.  

Keep us posted and do reach out whenever you have questions or feel the need for support. And please encourage her to join up and do the same. In the meantime you and she are in our thoughts.  

  

Scared

@Fearless - Vol Mod Thank you so much for this information and for your support.  I feel so hopeless and useless right now.  Hoping hoping hoping to find something that will stop the growth so she can stay around with me for at least a few more years. 😥🙏🏼

Fearless

@Scared

Try to be optimistic but I know that's easier said than done. I can tell you I was diagnosed in 2017 with high grade serous OVC (the most aggressive) stage 3C (advanced) and told. at the time, that unless primary treatment was 100% successful my prognosis was roughly 3 years.  Well it wasn't.  I now have recurrent OVC that will never be cured. But treatment has advanced so significantly the past few years and continues to do so  that I am now in year 5, in my fourth round of treatment (primary and a 2 years clinical trial included) and still going strong.  Yes, I fear dying but instead of focusing on that I try to stay focused on learning to live with this disease.  That said, I do know how hard it is on my husband and my son so we try to keep communication on the subject open and honest and frank.  It helps me to know I can have those conversations with them and it helps them feel more informed and engaged and in some ways helping me to be in control of our future. 

Reach out anytime we can be of help to you and your family.