Is there anyone on here that is in the The ECLIPSE PV trial with Besremi ?
I am thinking about trying to join the trial at MD Anderson In Houston.
The ECLIPSE PV trial will evaluate an accelerated dosing schedule for Besremi and compare it with the dose that is currently approved.
I know many on this forum like the low and slow approach.
Just wanted to see if anyone was participating in the study now ?
I am a proponent of the low and slow approach for most people using interferons. I am already borderline with acceptable leukopenia at 175mcg Besremi. I would not tolerate proposed higher dosing pattern. That is not to say that others would not do OK with more aggressive dosing. We are all different.
I expect that the data will ultimately support the low and slow approach, but that is an unproven hypothesis. We need better data to inform dosing practices. Hopefully people will volunteer for the clinical studies needed to gather the data.
I'm in the Exceed ET trial, which uses the accelerated dosing schedule of Besremi for ET patients.
I started January 11th, so I've been at the 500mcg dose for 2 injections now. I'm struggling with a lot of fatigue, but that's it. I also felt a lot of fatigue before I started Besremi, but this is definitely next level. I did have some injection site reaction after the first 2 injections that went in my belly, but since I switched to injecting in my thigh you can't even tell where the injection site is. It does hurt a tiny bit more when I inject in the thigh, compared to the belly, but it's totally worth it for the lack of reaction for sure.
Otherwise, no complaints here. My platelets have come down by about 100 since I first started. My next dose is this Thursday, but I have a bit of an infection where I had a skin biopsy done last week, so I'm not sure how that will affect my blood counts this week.
If you have any questions feel free to reach out to me! 😀
Hello all. This is my first time posting but I want to thank you all for the wealth of information and sharing on this site.
I have joined the study at MD Anderson, although it was not referred to as Eclipse. My paperwork calls it the study P1101. My concerns about side effects led me to decide that being part of the study with the immense amount of testing and monitoring would help me feel more at ease with taking Besremi. Although I must admit that the three days of testing at MDA was not fun. I was diagnosed with ET in 2014 at the age of 48. After 4 years it progressed to PV, but with very mild impact to my life. I experienced very mild itching, occasional dizzy spells, and occasional nose bleeds. The Nose bleeds were the worst as they would happen at the most inopportune time. (By the way, my ENT recommended a nasal emollient called Ponaris that has helped me to eliminate nose bleeds for over a year. I love that stuff!) However, in 2023, I become very anemic after all the therapeutic phlebotomies. I began to experience extreme fatigue, and horribly painful leg and toe cramping. My blood work was also looking really bad for almost a year with WBC at 19 k/ul, / Platelets at 1 million and HCT hovering at 45 to 47 even with phlebotomy. I worked with Dr. Verstovsek for years at MDA and he was always very conservative with me and didn’t want me to start any drugs as he considered me very healthy and low symptom. After he left in 2023 I began working with Dr Masrova and I think she agreed with the Anemia it was time to do something.
I have only been on the study for three weeks. I was assigned the low and slow arm of the study. My only side effects was significant diarrhea in the first week. We will continue to monitor that as we go forward. I was told not to expect my CBC numbers to approve for several months. What I will say about this study is that if you are on the aggressive dosage and you do not respond well, they would adjust for individual tolerability.
I did ask how many people were on the study at MDA and was told it was only a dozen or so as the entire study was only about 100 people. That is what the drug company wanted to target as they are paying for the drug. I also asked about the crazy price of Besremi and was told that pricing is based on how much it costs to make and how much they expect to sell. If the doctors can prove that the drug is safer for more people, the pricing will be adjusted based on forecasted sales. It does not help that some European countries will not cover it as they feel it is too expensive to justify, as the price will only go down when more people have availability. Seems like a chicken and egg situation.
I feel blessed to be in Houston and have availability to the MDA drug trials. And so far so good. Wishing all the best of luck with your journeys also.
thank you for all the info
I would be on the P1101 study also at MD ANDERSON
Am going to go forward with the consent next week and start the testing. Praying I am on the slower arm of the trial.
I started on Feb 20th. I was comforted by the fact that if you don't respond well to the higher dosage they will adjust for what you can tolerate. I believe this is in the consent form as well. Good luck to both of us!
I would give the clinical trial a try if I were you. I personally consider the manufacturer promoting the rapid escalation dosing schedule only to promote its sales which does not make a lot sense. However, in a clinical trial you will receive arguably the most comprehensive treatment and monitoring. In addition to that, you can always request to lower the dose or even leave the trial if you cannot tolerate the high dose. Its worth considering.
thank you for all your view points. If I get in the study I will let you know which arm and how it is going
Update: I did get into the Besremi clinical trial with the more rapid dosing schedule. I had my first injection at 250 last Tuesday.
I have had flu like symptoms and fever on and off. Then some fatigue!
I will keep you updated
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