Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
HGSOC with BRCA negative and no HRD
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Hi,
I am posting this to encourage those who fall into the HGSOC with BRCA negative and no HRD to respond. I would like to hear your stories. My reason for this post is to learn what others with this type of OV are experiencing. While HGSOC is the most prevalent form of OV, approximately 50% of HGSOC patients are BRCA positive and/or are HRD positive. These patients have the best prognosis of all of us with survival rates upwards from 50% at 5 years. Much research focuses on improving that 50% prognosis for BRCA positive/HRD positive. Hopeful survival stories for HGSOC patients usually reveal a BRCA positive/HRD positive or associated mutation background. For example, a RAD51 mutation is linked to BRCA positive.
I am seeking stories from the other 50% of HGSOC patients. I hope that some are hopeful, some will not be, but everyone's response helps me round out my view of our mutual challenge. It is difficult to sort through others' stories when the 'cause' is different...our disease is incredibly complex so I find it helpful to narrow the field.
Hope to see others' stories.
Always hopeful.
I am posting this to encourage those who fall into the HGSOC with BRCA negative and no HRD to respond. I would like to hear your stories. My reason for this post is to learn what others with this type of OV are experiencing. While HGSOC is the most prevalent form of OV, approximately 50% of HGSOC patients are BRCA positive and/or are HRD positive. These patients have the best prognosis of all of us with survival rates upwards from 50% at 5 years. Much research focuses on improving that 50% prognosis for BRCA positive/HRD positive. Hopeful survival stories for HGSOC patients usually reveal a BRCA positive/HRD positive or associated mutation background. For example, a RAD51 mutation is linked to BRCA positive.
I am seeking stories from the other 50% of HGSOC patients. I hope that some are hopeful, some will not be, but everyone's response helps me round out my view of our mutual challenge. It is difficult to sort through others' stories when the 'cause' is different...our disease is incredibly complex so I find it helpful to narrow the field.
Hope to see others' stories.
Always hopeful.
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Comments
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@ellie I hope you get the responses you're expecting however it's important to note that while testing for the BRCA 1 and 2 gene has become pretty standard in most cancer centres, testing for HRD is generally only done when there is a necessity to know. My tumor tissue was tested for HRD 4 years ago when a positive was a requirement to participate in a specific clinical trial I had applied to join. Otherwise I wouldn't know nor do any of my circle who have had only BRCA testing. Fortunately the BioDiva study and other efforts to "bank" the genetic pool of survivors will help expose a better understanding of what is out there for both clinicians and patients.0
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Understood Fearless Moderator. And your remarks are valid. While the HRD component may be unknown by many at this time, I hope that anyone with BRCA1 negative would respond. I expect HRD testing will become more prevalent as it is important in many clinical trials. PMCC does test for this now; it is one of those indicator tests when the sea of unknown mutations is broad and deep within the HGSOC domain.1
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@ellie I am BRCA 1 and 2 negative as well as negative for HRD. I paid to have it tested by a US lab (myriad) before starting Zejula as I thought it might help me make decisions around treatment if Zejula side effects were too difficult. I am negative for HRD as well. I did not have trouble with side effects except for rapid heartbeat but I recurred 6 weeks after starting which makes sense considering my negative status but very disappointing. I realized that I was no longer in the 'statistically more hopeful group' that responds to targeted therapy and it left me feeling vulnerable however I have been on weekly TaxolAvastin and responded very well and fast. Disease is still there but receded and most of my symptoms are gone. Not at all what I expected considering how aggressive it was in December and how much pain I was experiencing. I have been given a treatment break to go on a delayed honeymoon to the UK and i"m active and mobile so I will enjoy myself. I I fully understand the emphasis on research and treatment for BRCA?HRD+. It's where they can make the greatest difference and in the end findings and treatment for BRCA/HRD + will expand. I guess it's important to know that even if targeted therapy is not for some of us, the old standbys are still working and we are living longer and better than in the past. Oh and I was also in the Bio Diva trial. No mutations out of the over 500+ except for TP53! I think this was the most disappointing. I wish they had found something. It would be something to go on at least.0
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Thank you @mjmck21. I am grateful...to have a colleague with similar challenges. I do hope others respond who share our profile. It is difficult to identify those with our profile in other OVDialogue discussions.
As you pointed out, research and treatment focusing on BRCA?/HRD+ makes sense. Hearing some positive results using old standbys is encouraging. Gives one hope where not much exists currently. I believe that clinical trials involving T cells could eventually apply to ovarian cancer. However, clinical trials are often focused on solid tumors associated with various organs--I assume that trial results are more obvious when the tumor(s) is simpler; eventually OC is tested for any recurrence benefit but often appears to be a year or 2 (or later) after the initial clinical trial.
TP53 seems to be present in many OC subtypes. My pathology report also identified PAX8 and WT1. PAX8 is frequently (maybe always) present in HGSOC; I am not sure about WT1. PAX8 may be a promising target for clinical trials in HGSOC but the article I have was online in 2022; thus any clinical trials and benefit would be some years away.
I also have been on Zejula--since completing my first line chemo. I am now experiencing a CA125 increasing trend so most likely, it is not working now. I am waiting for results from a CT scan. When I had to stop Zejula due to plummeting hemoglobin, I felt a lifeline had been cut, however short that lifeline was.
My hope is that others with our profile will engage and share. Please share when you can @mjmck21.1 -
Thank you @strongwoman and @ellie I should correct my use of term targeted therapy. I implied that I wasn't able to use targeted therapy but Avastin is considered targeted therapy so there is that. I was referring to the more recent therapies where bio markers indicated improved outcomes like PARP I. Anyway targeted therapy is a broader term. If I have this wrong please let me know.
Also I am unable to find the article now.... but I believe I read that Ottawa Hospital is considering expanding the application of CAR-T therapy beyond blood cancers and Ovarian might be one of them. This would be a ways off but to the point about T cells being the next development. The trial at PMH I was hoping participate in was for an immunotherapy treatment. I mentioned in other posts that I needed to have certain bio markers which I did not have, so was excluded from that trial but it is encouraging that immunotherapy is being considered for OC. I do not understand why immunotherapy has not worked for OC and have wondered but it turns out that the OCC research forum in June will address that very question so I will be looking forward to that.0 -
@mjmck21
I wish you a wonderful and trouble free delayed honeymoon to the UK! Thanks for the heads up on the OCC research forum. I do hope and expect that a recording will be available as I will be in the air at that time.
Re immunotherapy, from what I have read, OC is characterized by a cold tumor immune microenvironment (TIM), whatever that means. Seems like other cancer cells do not develop tumor-specific immune cells, as does OC. I have read that OC turns Tcells into cancer cell supports which is frightening. Love to learn more about all of this as it may provide some hope eventually.
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