English Community

Just a quick update regarding my virtual appointment with Princess Margaret yesterday.  It was actually quite disappointing.  Because the tumour was of mixed etiology (mostly high grade serous but a small amount of carcinoma sarcoma in uterus), it makes me ineligible for most clinical trials.  I had actually forgotten about the sarcoma that they had found in the biopsy.  The doctor suggests that I continue with my current plan/treatment since it is slowing down the progression of the cancer and hopefully the cancer is alpha receptor positive and we can try elahare.  She will have me come in to get some bloodwork done and sign consents on case anything comes up in the future.  She states that it would likely be only phase one trials if something does come up.  So disappointing but at least I know where I stand with respect to clinical trials

@Sheryl I know how you feel. As someone with clear cell ovarian carcinoma, I am almost never eligible for a trial. I read up literature and news from conferences and try to keep current with what is going on. There is an increasing number of interest to a) either find a drug that kills all the solid tumours and b) more personalize to your actually biology of your tumor (regardless whether it is ovarian or not) to develop drugs. So, scientist are on to this problem.
Meanwhile elahere could be a really good option, so I you have positive receptors, go for it.

Thanks Tanja.  I really had never thought of this as an issue until it became one for me.  It must be discouraging for you and others like you, who don't have the more common high grade serous carcinoma.  I tend to be an information seeker/ follower too, so this is definitely good advice for me.  It seems to be such a hard cancer to treat.  Thank you for your kind words of support.  I really appreciate them and wish you all the best in your treatment and health journey.

@sheryl

Sorry to hear there is no clinical trial available for you at this time.

I'm glad your current treatment is keeping the cancer stable.

I am currently waiting for my FRa results. It does take awhile to get the results - it's been well over 8 weeks now. So, the sooner you can get in for bloodwork to get the process started, the better. 

When you go in to sign the paperwork, I would suggest you discuss their process for tracking individual patients waiting for trials. Personally, I would set up a check in schedule with the Dr to see if there are any new trials. They are very busy and my concern would be that my file falls through the cracks. I'm not sure what that schedule would look like…every month or two you could call in to inquire? Also see if there is someone you can contact directly each time…that way you don't have to explain why you're calling each time.

@GloHo. Good advice. I also feel that there is a bit a person missing who keeps the view to match patients to available trials - it is too much for the docs.
Do you know who does the FRa receptors? Do you know if elahere is available as clinical drug or only in a trial setting? I know I discussed this issue with my PMH doc and learned that approval in Canada may still take some time.

@Tanja

I would hope there's a point person in the gynaecology unit for the Drs or maybe someone in the clinical trials unit? I'll put that on my list for feedback/queries when I talk to the clinical trials unit. 

Elahere is still under review. I think Drs are just preparing for approval and getting the tests done now so they'll be able to move eligible patients into treatment quickly.

There are two clinical trials available in Canada for Elahere. One is for platinum sensitive and the other is for checking ocular side effects. 

If anyone is interested in getting Elahere, check the criteria on the Elahere site. It's approved in the States so the criteria is available. Then talk to your oncologist about it. Your oncologist would have to send in a fresh or frozen tissue sample and bloodwork to get the test done. Both of these processes take time so the sooner the better. NOTE: I believe this is the process. 

My personal experience…the Dr I saw mentioned that he was putting in a compassionate request for Elahere for me and my oncologist was planning on sending a sample from my recent biopsy for testing. I am not eligible because of the number of treatments I've had…and, FRa positive is a requirement…waiting for that result. There was absolutely no prompting on my part…the team just started moving on it!! I don't know if PMH is just on top of these things and tends to move faster than other centres?

That's my take on things. 

Thanks GloHo.  Good advise.  The tumour is currently being tested in London for FRa.  I will ask about how I can check in with the doctors at PMH to see about any new trials I might be eligible for.  I appreciate all your good advise😊

Hi @sheryl Sorry to hear the news about the qualification for most current clinical trials. I'm glad they at least have a path forward with continuing with the current plan/treatment since it does seem to be having an effect. I'm going to have to do some research on what an 'alpha receptor' is however I hope you have those so that Elahare becomes an option. Thinking of you and sending nothing but positive thoughts your way.

Thank you so much😊