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Hello everyone,

I am part of a new Clinical Trial (Trevi) and I start tomorrow. It is comparing a new drug by AstraZeneca to a standard of care that is different depending on if you are folate alpha high or low. If you are folate alpha high, then the standard of care is Elahere. If you are low, then the Dr will determine what the standard of care is. So if you are folate alpha high, there are two really good options. I got randomized today and will be receiving Elahere. Was hoping for the new one but, really, there are no bad options here. Purpose of my post is two things: 1- to let people know of this trial as it is a way to get Elahere and 2- to ask about side effects from anyone who might have been on Elahere. I know the basics (eyes, neuropathy etc). Just wondering if anyone did the icing as prevention and if it worked? I got very mild neuropathy with my first treatment and none with the second. 

Again the trial is Trevi run by AstraZeneca 

Hello @GoldenDaisy !

Wonderful that you are sharing this news. I have recieved my 8th Elahere (Mirv) treatment last week and will be on it until it no longer works or I develop toxicty. My dosage has already been reduced to 80% because of worsening neuropathy which started in 2023 with carbo/taxol infusions. I haven't tried icing yet. I find the evening of Mirv infusion difficulty getting around, balance and body off kilter. I must say that my first 3 treatments I felt great. I understand diarrrhea and constipation are something to watch for. Various aches and pains along with headaches seem to be par for the course for me. Everyone will react differently of course and Abbvie the maker of Elahere has a website which lists known side effects. When I started back in March my Onc and team had no info to provide. Good luck today!

Thank you @GoldenDaisy for the information on the Clinical Trial. I really hope it goes well today! 

Thank you @Vonnie_613 for weighing in on your experiences. All of your posts have been so helpful!

@GoldenDaisy if you don't mind I have a few questions regarding the trial. Your responses may be helpful for anyone who is unfamiliar with OR considering exploration of trials. First, how did you find out about the trial? Did you research it yourself? Did your oncologist raise it with you? Second, how did you find out if you were folate alpha high or low? Was that done by the trial administrators once you were accepted for the trial? 

As for icing, while I cannot speak to Elahere, I did do icing of my hands and feet during my pac/carbo chemo and will attest to the fact that it helped reduce my neuropathy. Is there science to prove that. Nope but the fact that by my third infusion my neuropathy (which was horrible with my first infusion) was all but gone was enough for me to be a believer. I just took ziploc bags and had ice put in them. I then rotated them on and off my hands and feet for 10-15 minutes at a time as long as I could tolerate it and only during the time of the actual infusion (plus 10 minutes after).

Also, for anyone interested in finding out more about clinical trials there is a wealth of information on the OCC website. See the link below.

OCC research and clinical trials

#Resources #Clinicaltrialsandresearch #Treatmentandsideeffects 

The trial was brought to my attention by my med oncologist burnt main group of drs are at the Royal Vic in Montreal and are very involved in research. If anyone looks up trevi ovarian cancer they should find it. Dont know where else in Canada it is being offered off the top/of my head. My team here had tested me in house but a sample is sent to the drug company to confirm esp seeing as there is a differrent standard of care if you are high or low. But you can get the study drug either way. But you/would only get MIRV as your standard if you test high. So it Is a good option either way if you test high. Had to do a vision test and EkG and had to have something measurable on a scan.Ask away…if it helps others then great!

btw i am back to exercising! Joined a gym 2x a week, hope Rustin and then walk the other days

@GoldenDaisy thank you so much for this information! Also yeah to you for getting back on the "exercise" train. Every little bit helps doesn't it!!

Here's a link to the clinical trial: 

https://clinicaltrials.gov/study/NCT07218809