konagirl
Active member
- Joined
- Oct 16, 2015
- Messages
- 56
- Reason
- CALS
- Diagnosis
- 04/2016
- Country
- US
- State
- FLORIDA
- City
- Jacksonville
Hello,
My husband is eligible for 3 different trials coming up in the next month or so under Mayo here in Jacksonville (Dr Boylan). Because they will all overlap on time frames, we have to chose just one. I'm curious to know, does anyone have any experience with the phase 1 trials? My gut is telling me to take this route but I'm just unsure. Our options are this:
A: GDC-0134 (Phase 1 study) "This is an oral medication that is thought to help by blocking the activity of a protein in your brain cells called DLK (dual leucune zipper kinase). Blocking DLK my protect neurons and prevent them from dying in ALS"
This will require 4 consecutive nights in the hospital 4 separate times, with the trial lasting between 3-5 months. They are accepting 32 patients and our Dr is slotted for 8 of them. The study is funded by Genentech.
B: Ezogabine (Phase 2 study) I believe most of you are familiar with this one. The study will last ~14 weeks and there will be 192 patients accepted, 12 of which where we are.
C: Tirasemtiv (Phase 3 study) I believe most of you are familiar with this one too. This study will take ~60 weeks to complete and they are accepting 445 people, 35 of them with our clinic.
Thoughts? Weigh-ins? My husband turned 37 in March, diagnosed with PLS in January of 2016 and just recently his diagnosis changed to ALS on April 14 2016. He is showing no bulbar symptoms, he has severe spasticity in his legs and his hands are losing strength quickly.
My husband is eligible for 3 different trials coming up in the next month or so under Mayo here in Jacksonville (Dr Boylan). Because they will all overlap on time frames, we have to chose just one. I'm curious to know, does anyone have any experience with the phase 1 trials? My gut is telling me to take this route but I'm just unsure. Our options are this:
A: GDC-0134 (Phase 1 study) "This is an oral medication that is thought to help by blocking the activity of a protein in your brain cells called DLK (dual leucune zipper kinase). Blocking DLK my protect neurons and prevent them from dying in ALS"
This will require 4 consecutive nights in the hospital 4 separate times, with the trial lasting between 3-5 months. They are accepting 32 patients and our Dr is slotted for 8 of them. The study is funded by Genentech.
B: Ezogabine (Phase 2 study) I believe most of you are familiar with this one. The study will last ~14 weeks and there will be 192 patients accepted, 12 of which where we are.
C: Tirasemtiv (Phase 3 study) I believe most of you are familiar with this one too. This study will take ~60 weeks to complete and they are accepting 445 people, 35 of them with our clinic.
Thoughts? Weigh-ins? My husband turned 37 in March, diagnosed with PLS in January of 2016 and just recently his diagnosis changed to ALS on April 14 2016. He is showing no bulbar symptoms, he has severe spasticity in his legs and his hands are losing strength quickly.