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OCTANE
Ontario-wide Cancer Targeted Nuclear acid Evaluation

My Onc invited me to take part in the OCTANE clinical study. Of course I said yes!

OCTANE is another study to provide biomarker data from targeted gene sequencing.

I told her I had already participated in POWER (London, On) and BIODIVA. She said that things could change as you move along in your journey so it may be worthwhile to do it at this point.

I had to give two vials of blood when I was there this week to get the application started. They are going to see if there is enough archived tissue to sample from my last biopsy. I had two for the trial I just completed so I'm hoping they can grab something from one of those. They will know in 2-3 weeks if there is enough archived tissue to send for this study. If not, when I progress, they will ask for a fresh biopsy sample from one of the progressing tumours.

Once the tissue samples are submitted, it will take 2-3 months to get the results.

@GloHo I appreciate your ongoing willingness and commitment to all these trials!!

OCTANE
Ontario-wide Cancer Targeted Nuclear acid Evaluation

My Onc invited me to take part in the OCTANE clinical study. Of course I said yes!

OCTANE is another study to provide biomarker data from targeted gene sequencing.

I told her I had already participated in POWER (London, On) and BIODIVA. She said that things could change as you move along in your journey so it may be worthwhile to do it at this point.

I had to give two vials of blood when I was there this week to get the application started. They are going to see if there is enough archived tissue to sample from my last biopsy. I had two for the trial I just completed so I'm hoping they can grab something from one of those. They will know in 2-3 weeks if there is enough archived tissue to send for this study. If not, when I progress, they will ask for a fresh biopsy sample from one of the progressing tumours.

Once the tissue samples are submitted, it will take 2-3 months to get the results.

OCTANE
Ontario-wide Cancer Targeted Nuclear acid Evaluation

My Onc invited me to take part in the OCTANE clinical study. Of course I said yes!

OCTANE is another study to provide biomarker data from targeted gene sequencing.

I told her I had already participated in POWER (London, On) and BIODIVA. She said that things could change as you move along in your journey so it may be worthwhile to do it at this point.

I had to give two vials of blood when I was there this week to get the application started. They are going to see if there is enough archived tissue to sample from my last biopsy. I had two for the trial I just completed so I'm hoping they can grab something from one of those. They will know in 2-3 weeks if there is enough archived tissue to send for this study. If not, when I progress, they will ask for a fresh biopsy sample from one of the progressing tumours.

Once the tissue samples are submitted, it will take 2-3 months to get the results.

OCTANE
Ontario-wide Cancer Targeted Nuclear acid Evaluation

My Onc invited me to take part in the OCTANE clinical study. Of course I said yes!

OCTANE is another study to provide biomarker data from targeted gene sequencing.

I told her I had already participated in POWER (London, On) and BIODIVA. She said that things could change as you move along in your journey so it may be worthwhile to do it at this point.

I had to give two vials of blood when I was there this week to get the application started. They are going to see if there is enough archived tissue to sample from my last biopsy. I had two for the trial I just completed so I'm hoping they can grab something from one of those. They will know in 2-3 weeks if there is enough archived tissue to send for this study. If not, when I progress, they will ask for a fresh biopsy sample from one of the progressing tumours.

Once the tissue samples are submitted, it will take 2-3 months to get the results.

Hi@Tanja

First…so very happy to hear that your last scan was clear! That is definitely great news! You must be over the moon to have received this news. Enjoy! 

Now, the promising news about Elahere…from what I've read…Elahere is being prescribed for clear cell!! However, patients must be FRa positive and have received 1-3 prior types of chemotherapy. 

This is what is on the Elahere website about determining FRa status: 

Before you start treatment, your doctor will test a sample from your tumor to confirm that your cancer is FRa positive.

Your doctor may be able to use tissue from an earlier biopsy or surgery for testing.

Now, this brings me back to my discussion about the larger biomarker studies…if you want to participate in one of the extensive biomarker studies (if one is available for you), this is the time to speak to your Onc in order to get additional tissue samples while you are undergoing this biopsy procedure. 

Thank you for letting me know that journaling about my trial experiences has been of interest to you.

I do a lot of research, self-advocate and am very active in decision-making for my care. I am very fortunate to have had health care teams that have been so understanding, open to discussions, and have offered the best advice at each stage of my journey. 

I think if you were able to get through the survey then your voice will be heard. I didn't get past the first question so I have no idea what insights they are looking for.

I totally agree that the process for approval in Canada is too far behind other countries! So very frustrating!!

#elahere
#Mirvetuximab Soranvanstine-gynx
#Treatment and side effects
#FRa
#folatereceptoralpha 
#biomarkers
#clearcell

Original Message:
Sent: 02-14-2025 09:28
From: Tanja Gonska
Subject: clinical trials

@GloHo thank you for sharing all your trial experience as I will be hading this way, I think. My problem is that with a clear cell there are actually not many trials out there. Interesting to see that you participate in som many biological trials, and I was not offered one at PMH - maybe again different tumor? I discussed with my Onc the fact that Elahere - which I think is the new rescue drug when you are carboplatin resistant - is coming so late to approval in Canada while other countries already have it available for patients. This is a systemic problem in Canada and so frustrating when your tumor survival is so time sensitive- drug access for patients is always late. This is why I actually don't understand that OC Canada does not allow other OC patient's voices to be heard in their gathering of insights. I did fill out the service and expressed my anxiety looking forward. Sad to know that they may remove my piece.
GloHo but your story is hopeful. It appears that while OC may not be curable, it can be managed and it seems you have found a really good path through it. My Ca125 was also rising (2nd surgery and C+P after recurrence in Jan 24 after dx in Feb23) but my CT last week was completely clear- yeah! I have chatted with my surgeon about it and she also felt that my bike accident last Nov with ongoing hip pain (accident was not so big but caused big hematoma on my buttock) could explain the rise in Ca125. Good to know. So, please keep informing about the trials and your trial experience. I find this really helpful.


Original Message:
Sent: 2/13/2025 4:14:00 PM
From: GloHo
Subject: clinical trials

OCTANE
Ontario-wide Cancer Targeted Nuclear acid Evaluation

My Onc invited me to take part in the OCTANE clinical study. Of course I said yes!

OCTANE is another study to provide biomarker data from targeted gene sequencing.

I told her I had already participated in POWER (London, On) and BIODIVA. She said that things could change as you move along in your journey so it may be worthwhile to do it at this point.

I had to give two vials of blood when I was there this week to get the application started. They are going to see if there is enough archived tissue to sample from my last biopsy. I had two for the trial I just completed so I'm hoping they can grab something from one of those. They will know in 2-3 weeks if there is enough archived tissue to send for this study. If not, when I progress, they will ask for a fresh biopsy sample from one of the progressing tumours.

Once the tissue samples are submitted, it will take 2-3 months to get the results.

@GloHo I chatted with my Medical Oncologist at PMH about determining the folate receptor alpha to see if I were to be eligible for Elahere, should the tumor recur. She told me that this test is not available in Canada yet and only comes with approval of Elahere. For all the others reading this, there is the option to go for second opinion to another country and they may offer you to test your tumor for more biomarkers. It does costs but this is somewhat affordable.  I guess, however, once you know, e.g. that you are positive for FRa then you really want the drug.

Hi@Tanja

First…so very happy to hear that your last scan was clear! That is definitely great news! You must be over the moon to have received this news. Enjoy! 

Now, the promising news about Elahere…from what I've read…Elahere is being prescribed for clear cell!! However, patients must be FRa positive and have received 1-3 prior types of chemotherapy. 

This is what is on the Elahere website about determining FRa status: 

Before you start treatment, your doctor will test a sample from your tumor to confirm that your cancer is FRa positive.

Your doctor may be able to use tissue from an earlier biopsy or surgery for testing.

Now, this brings me back to my discussion about the larger biomarker studies…if you want to participate in one of the extensive biomarker studies (if one is available for you), this is the time to speak to your Onc in order to get additional tissue samples while you are undergoing this biopsy procedure. 

Thank you for letting me know that journaling about my trial experiences has been of interest to you.

I do a lot of research, self-advocate and am very active in decision-making for my care. I am very fortunate to have had health care teams that have been so understanding, open to discussions, and have offered the best advice at each stage of my journey. 

I think if you were able to get through the survey then your voice will be heard. I didn't get past the first question so I have no idea what insights they are looking for.

I totally agree that the process for approval in Canada is too far behind other countries! So very frustrating!!

#elahere
#Mirvetuximab Soranvanstine-gynx
#Treatment and side effects
#FRa
#folatereceptoralpha 
#biomarkers
#clearcell

Original Message:
Sent: 02-14-2025 09:28
From: Tanja Gonska
Subject: clinical trials

@GloHo thank you for sharing all your trial experience as I will be hading this way, I think. My problem is that with a clear cell there are actually not many trials out there. Interesting to see that you participate in som many biological trials, and I was not offered one at PMH - maybe again different tumor? I discussed with my Onc the fact that Elahere - which I think is the new rescue drug when you are carboplatin resistant - is coming so late to approval in Canada while other countries already have it available for patients. This is a systemic problem in Canada and so frustrating when your tumor survival is so time sensitive- drug access for patients is always late. This is why I actually don't understand that OC Canada does not allow other OC patient's voices to be heard in their gathering of insights. I did fill out the service and expressed my anxiety looking forward. Sad to know that they may remove my piece.
GloHo but your story is hopeful. It appears that while OC may not be curable, it can be managed and it seems you have found a really good path through it. My Ca125 was also rising (2nd surgery and C+P after recurrence in Jan 24 after dx in Feb23) but my CT last week was completely clear- yeah! I have chatted with my surgeon about it and she also felt that my bike accident last Nov with ongoing hip pain (accident was not so big but caused big hematoma on my buttock) could explain the rise in Ca125. Good to know. So, please keep informing about the trials and your trial experience. I find this really helpful.


Original Message:
Sent: 2/13/2025 4:14:00 PM
From: GloHo
Subject: clinical trials

OCTANE
Ontario-wide Cancer Targeted Nuclear acid Evaluation

My Onc invited me to take part in the OCTANE clinical study. Of course I said yes!

OCTANE is another study to provide biomarker data from targeted gene sequencing.

I told her I had already participated in POWER (London, On) and BIODIVA. She said that things could change as you move along in your journey so it may be worthwhile to do it at this point.

I had to give two vials of blood when I was there this week to get the application started. They are going to see if there is enough archived tissue to sample from my last biopsy. I had two for the trial I just completed so I'm hoping they can grab something from one of those. They will know in 2-3 weeks if there is enough archived tissue to send for this study. If not, when I progress, they will ask for a fresh biopsy sample from one of the progressing tumours.

Once the tissue samples are submitted, it will take 2-3 months to get the results.