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Trials
Comments
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@annlaba Hello! I do not take them but typed those two names in the search bar but then did not come up with much. So, I looked up niraparib and found out it is also called Zejula. When I typed Zejula and Avastin in the search bar, much more info and posts came up. Try that and see if it helps, if not come back with your questions. I am sure a couple of the ladies have had this treatment.0
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Has anyone taken part in a US American trial? There are so many more than in Canada and it is pretty difficult to get in. I was offered to participate but would need to pay the standard treatment component. Anyone with any experience?
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@Tanja I myself have not participated in a US trial ( nor Canadian) but it's interesting to read that Canadians are allowed to participate in American trials. Now that I think about it, I don't see why not. I have not spent a lot of time researching trials. If I read correctly I see you have clear cell , so do I . Have you recently been diagnosed? I think you are right when you say it is difficult to get accepted into a trial. I wonder how much it would cost to pay for the standard treatment?
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@Tanja Thank you for your input into this. I am going to defer to our most esteemed @GloHo on this as she is the most up to date on the trials etc and active on the site that I am aware of. She may have some light to shed on this as well.
It would make sense that yes you can participate but…….the hangup is this…..meaning that you have to pay for part of the treatment. The cost sometimes is the biggest barrier for many as it is so out of reach for so many of us, I truly hope that changes or that the cost of that changes to make it more affordable for more Canadians. Perhaps lobbying for this with local MP's or with OCC would help. You could start there if you want to make a change and see if it gets anywhere,
Where does that leave you with treatment and with your clear cell? I know it is a rarer type and don't recall where you are in your journey.
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Hi all. @Tanja @melissa @Strongwoman
While it is true that I have done significant research into Canadian trials, I have not yet really researched US trials.
It is my understanding that some US trials will accept Canadian participants. I have also heard that the costs of tests, etc. would be paid by the participant.
I do have a recollection that I read somewhere that one of the international organizations (NIH, NCTI, other?) may cover those costs for participants from other countries in their trials. Of course, transportation, accommodation and food is the responsibility of the patient (this is true for most Canadian trials, too).
There may be services or financial aid through Canadian organizations that would support a Canadian participating in an out-of-country trial.
There are so many pieces to pull together for a US trial, I just haven’t been able to really sink my teeth into it.
Now that this is back on my radar (I expect to be withdrawn from my current trial shortly), I think I will just call up some of the larger centres in the States to see what they say and will try to find that reference regarding international participants. I will also see if I can get in touch with someone at the Canadian Cancer Society who may know about out-of-country trials.
I suffered trial burn out and stopped researching for a bit!🤣🤣0 -
Thank you @GloHo for all that info and for looking into this a bit further for the ladies. I appreciate any knowledge you can give in this area. Or anyone else that may have any knowledge they would like to share. It is a community after all and how we learn and grow from that matters. Thank you!
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Hi everybody,
thank you for the discussion. To me: diagnosed with ovarian clear cell OCCC in Feb 2023 stage IV. Good complete surgery and 6 cycles of Carbo+Paclitaxel (Standard) + Avastin. Avastin for total of 12 cycles. Small splenic recurrence seen on CT in February. I am not classic OCCC as my genetic show that I am TP53 positive. They categorize me as Carbo platin sensitive, but recurrence was after 7 months - so barely sensitive. Trial that was offered in Buffalo was Pembrolizumab (PD-1 antagonist, immune therapy) + immune enhancer _+ Avastin. Made sense to me. Also understand that cancer is a systemic disease (book "Emperor of all maladies"). But caveat was that participation not before August and inclusion in trial is not guaranteed. I actually now learn that getting on a clinical trial is actually really difficult. Also self-costs would be $12-13,000 per cycle or $255,000/year or CAN$ 355,000/year. On the other hand, my oncologist here (PMH) gave me the chance for 2nd surgery and I am going for it tomorrow.
I am a scientist myself and dived into ovarian cancer research - like most of you. There is not much out there for clear cell. It behaves differently compared to serous cell. It does not well respond to carboplatin and associated drugs, PARP inhibitors don't work but may respond better to immune therapy. Most of the clinical trials include serous cell but not clear cells. There is a very limited number of clinical trials in Canada. This because a) smaller country and b) more restriction from Health Canada. Yes, we need to advocate, and I am so happy to see that you are all doing this already. If you look for clinical trials: go to
https://ocra.careboxhealth.com/
this is a site from the Ovarian cancer research alliance (US based) or go to - all clinical trials need to be registered on this site. You can type your cancer in there. There is an email contact for each clinical trial.
talk to you soon agin.
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@Tanja Sounds like you have found a solution at home here. What kind of surgery are you having tomorrow and what is your down time etc? How are you feeling about it all? Yes, your type of cancer is rarer. I believe I am TP53 as well. They can't find anything specific for me to target unfortunately in the two panels I have done. Perhaps in the years to come they may find something. Would be nice. Anyhow, I wish you the best tomorrow and hope your recovery goes as well as can be expected. Take care of you and rest so you can recover well.
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Hi @Tanya, it’s been a while, I do hope all is well and that your 2nd surgery went ahead with promising results.
I too have clear cell ovarian cancer. Had a total hysterectomy 4 years ago, followed by platinum chemo. Simultaneously I also had Breast cancer, which was considered to be a the lower risk, but as fate would have it, 2 years ago, I was diagnosed with metastatic stage 4 breast cancer, for which I am now back in Treatment.
I still feel I’m not necessarily out of the woods where the OC is considered, so I try to pay attention to what is happening in this part of my life too. Especially trying to follow those with Clear Cell such as yourself. I do hope you are doing well.
best regards.0 -
@Strongwoman and @Tinazzie. I am doing well. Recovering from the surgery with only single site recurrence. They took the spleen out. But there is a next chemocycle with the same old Carbo + Paclitaxel. I am currently trying to get another round of Bevacizumab financed. While doing this, I learned that we in Canada actually never got the original Bevacizumab but the biosimilar MVASI. Should work alike but it is not the same. I will need to find how far I get. There is really an urgent need to open up drug access in Canada.
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@GloHi, last time there was 3 week gap, this time is a 5 week gap to chemo start. However, I wish to start as soon as possible. I feel that if you want to win the race against cancer, you can not wait too long.
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When I had my surgery I remember my surgeon telling me in the recovery room that she was going to try and get me my first chemo dose while I was there in the hospital..... Meaning the day after my surgery. At the time I thought to myself...... Is she nuts?? 6 days after surgery I had chemo #1 now I realize she was doing what she could to help my odds
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