A sad update.

[John Pollman]

Today's a hard day.
This morning I took the last dose of my trial drug. I've been on this treatment for almost three years. This drug trial is pretty much the only treatment for my Late Onset Tay Sachs. I have had no negative side effects and I feel that it has helped me. The trial sponsor feels differently and has shut the trial down unexpectedly. In a couple of weeks, I'm headed to NIH in Bethesda, MD for four days to get the final lab work and tests done to wrap up the trial.

This is very hard but I'll get through it. It just feels like a light at the end of the tunnel has been extinguished.

 

[Don Baer]

John, I am so sad to hear this new. I know how much you have been relying on this trial to be a solution to you health issue. I also know that you are a strong person and will find a way to cope with your health issue. Hand in there Bud.

 

[Vaughn McMillan]

Sad news indeed. Sending my best in hopes you can find a new light for your tunnel.

 

[Darren Wright]

Sorry to hear this, but hang in there John. Hopefully they will have better news for you when you do labs.

 

[David Johnson]

Perhaps the lab results may shed a new light on things for going forward. The best of everything to help your condition. Bummer to get such unwelcome news.
Daid

 

[Jonathan Shively]

John, I have written and deleted a half dozen supposed uplifting ideas. Then it hit me that you have been so resilient in your fight that nothing I say can offer higher spirits. Sorry about the news of the ending of the trial. Who knows what opportunity this may open up. Talk to your doctors and research more research trials? Have you in my prayers and keep up the good fight. None of us are guaranteed tomorrow.

 

[Leo Voisine]

I do hope that the test results shows positive that the trial drugs were an answer. If not then the hope of a new more better treatment is available.

 

[Ryan Mooney]

John, I have written and deleted a half dozen supposed uplifting ideas. Then it hit me that you have been so resilient in your fight that nothing I say can offer higher spirits. Sorry about the news of the ending of the trial. Who knows what opportunity this may open up. Talk to your doctors and research more research trials? Have you in my prayers and keep up the good fight. None of us are guaranteed tomorrow.

This said everything I was thinking more succinctly. I have faith you'll keep fighting the good fight and keep my fingers crossed for more options opening up!

 

[allen levine]

keep punching, the fight is still on.

 

[allen levine]

i dont6 want to tread on your thread....but wanted to mention, and yes, this isnt about me, but the past year or so my myasthenia is torturing me. Im having more eye problems and shaky hands and muscle weekness.
its been a real problem, I go to one of the top neurologist on long island, he cant offer me anything else accept a shrug, not much I can do as I age and it progresses. I was on infusion ivig for 10 years but stopped working so I stopped it......nowadays, ;im no longer able to put in 8 hour hurricane sessions in the shop.....it disturbs me, but hey, we are vertical, we have family who loves us, so Ill just woodwork a bit less.\
its a reason me and elen have been running on alot of short roadtrips as at least if we go somewhere like a casino, I can spend half the day resting and half the day doing whatever.
stay strong john. never let the beast win.