ScottSmith
New member
- Joined
- Oct 30, 2020
- Messages
- 7
- Reason
- PALS
- Diagnosis
- 10/2020
- Country
- US
- State
- KS
- City
- Kansas City
I am trying to decide between the Healey Platform Trial and the Phase 2 Adipose Derived Mesenchymal Stem Cell Trial at Mayo. I have already been screened and gotten into the Mayo trial. But I can opt out of that sill and get into Healey. I am bulbar onset, diagnosed last year, sporadic, ALSFR 43, 39 years old.
Stem Cell Pros - No placebo. It's my own stem cells so its relatively safe. I've heard a great anecdotal story from a PALS who did it and halted progression for 8 months. It's 4 treatments (1 every 3 months).
Stem Cell Cons - A long lead in time (wouldn't get stem cell treatment till July 2021). 6 hour travel. At least one trip a month. They aren't adding neurotrophic factors like NurOwn did. No open label extension.
Healey Pros - I have a clinic doing it right here in Kansas City. I could get treatment as early as March. Open label extension. Relatively short (opportunity to get into another trial).
Healey Cons - 25% chance of placebo (still pretty good but worse than 0%). Don't get to choose the therapy (I'm wanting the CNM-Au8, very strong pre-clinical data).
I know that I'm really fortunate to have options. I don't want to pretend I have a real dilemma here. But it does feel like a big decision to guess right on. After all, many of us only get one shot at this. Thanks for your help and support! I'm curious to hear the feedback.
Stem Cell Pros - No placebo. It's my own stem cells so its relatively safe. I've heard a great anecdotal story from a PALS who did it and halted progression for 8 months. It's 4 treatments (1 every 3 months).
Stem Cell Cons - A long lead in time (wouldn't get stem cell treatment till July 2021). 6 hour travel. At least one trip a month. They aren't adding neurotrophic factors like NurOwn did. No open label extension.
Healey Pros - I have a clinic doing it right here in Kansas City. I could get treatment as early as March. Open label extension. Relatively short (opportunity to get into another trial).
Healey Cons - 25% chance of placebo (still pretty good but worse than 0%). Don't get to choose the therapy (I'm wanting the CNM-Au8, very strong pre-clinical data).
I know that I'm really fortunate to have options. I don't want to pretend I have a real dilemma here. But it does feel like a big decision to guess right on. After all, many of us only get one shot at this. Thanks for your help and support! I'm curious to hear the feedback.