Stem cell clinical trial- has this been posted yet? - Page 2

rocmg · 09-22-2009, 11:56 PM

a prayer will have been answered for whatever PALS is chosen to go first...

i suppose they will be choosing patients who are in the latter stages of disease -- if death is delayed for 2 years (length of study time?), then the researchers and doctors might be able to deduce that the stem cells have played a part in that..

brooksea · 09-23-2009, 07:12 AM

It seems they may be looking for those pALS that have rapidly progressed with their disease and therefore if the experiment goes wrong, "no harm done." My husband and I spoke about this and he still wants to participate. I, however would like to wait for further trials.

To answer your question Erica: My husband started with bulbar and hand symptoms simultaneously.

pocuita · 09-23-2009, 08:54 PM

Quote:

a prayer will have been answered for whatever PALS is chosen to go first...

i suppose they will be choosing patients who are in the latter stages of disease -- if death is delayed for 2 years (length of study time?), then the researchers and doctors might be able to deduce that the stem cells have played a part in that..

I am praying this works!!

My Father was dx 4/09 he went from walking to needing a feeding tube

I pray they stop the progression!

Big Mike · 09-25-2009, 03:06 AM

Quote:

Originally Posted by rocmg

a prayer will have been answered for whatever PALS is chosen to go first...

i suppose they will be choosing patients who are in the latter stages of disease -- if death is delayed for 2 years (length of study time?), then the researchers and doctors might be able to deduce that the stem cells have played a part in that..

Yes, but if some of the participants are on a trache and vent, then time to death will be more indefinite.

pocuita · 10-01-2009, 09:04 AM

My father had a visit at UofM yesterday and they said he would be a perfect candidate for this trial. They are considering him. They are accepting 12 patients.

They also talked about potential risks. My mom did not have time to tell me exactly what they are, just that it could be bad.

I will keep you updated.

Take care
Jen

hopingforcure · 10-01-2009, 01:55 PM

I will be very interested to hear more about your father and the trial. Thank you for the post, this forum allows us so much avaliability to share such important and helpful information.

Blackpool · 10-01-2009, 03:43 PM

Good luck to your Dad, keep us updated.Maybe this is the break through.

flyingaseagles · 10-01-2009, 10:57 PM

I hope they do come through with stem cell trail. That would be so wonderful !!!

gramma · 10-05-2009, 07:55 PM

Quote:

Originally Posted by pocuita

My father had a visit at UofM yesterday and they said he would be a perfect candidate for this trial. They are considering him. They are accepting 12 patients.

They also talked about potential risks. My mom did not have time to tell me exactly what they are, just that it could be bad.

I will keep you updated.

Take care
Jen

Hi,

May I ask who would be the best person to contact at U of M regarding the trial?

Thanks.

rocmg · 10-05-2009, 08:10 PM

Quote:

Originally Posted by pocuita

My father had a visit at UofM yesterday and they said he would be a perfect candidate for this trial. They are considering him. They are accepting 12 patients.

They also talked about potential risks. My mom did not have time to tell me exactly what they are, just that it could be bad.

I will keep you updated.

Take care
Jen

Jen,

Please keep us updated as to the requirements of the study and if your dad is successful in being accepted. I hope he is.

Please God, something good will come of this. we all -- PALS and CALS -- desperately need it.

R.

pocuita · 10-06-2009, 08:22 AM

Quote:

Hi,

May I ask who would be the best person to contact at U of M regarding the trial?

Thanks.

I will ask my mom. I know they talk to Anne Marie and my dad had scheduled an appointment with the clinic, I am not sure who they spoke with.

Cassandra · 10-06-2009, 11:56 AM

The following is from the Emory site:

This trial will deliver neural progenitor cells to the spinal cords of ALS patients. These cells have been demonstrated to differentiate into neurons and glial cells. Their therapeutic impact in animal models is attributed to the ability of the neuronal progeny to secrete inhibitory neurotransmitters, and the ability of the glial cells to secrete trophic factors and scavenge excitatory amino acids.

The trial will initially recruit nonambulatory patients to undergo lumbar spinal cord transplants. If these transplants prove safe, ambulatory patients will be recruited for lumbar transplants. Finally, if these patients have an acceptable level of complications, we will recruit ambulatory patients for cervical spinal cord transplants, with the goal of preserving respiratory and upper extremity function.

KinzaDAF · 10-14-2009, 04:48 PM

Is it going to be two years then, until this phase is over and ambulatory patients will be considered? Sigh. HURRY!

Debbie

pocuita · 10-15-2009, 07:56 AM

I spoke with my mom about this again. She is being told it could be a year before they even start the treatment!! Sadly, I think it will be too late for my dad to be apart of it, because he is progressing very fast.

It is so frustrating to be so close but yet so far!!

Praying the speed this trial up for everyone!!

FindlayPALS · 10-16-2009, 02:35 PM

My husband has been in contact with U of M and Emory regarding this trial. He is, of course, very interested. He was told it will probably be several months before necessary approvals are obtained to begin. He was also told they are most interested in candidates living in the Atlanta area, since frequent visits and close monitoring will be required. Emory will be deciding who participates. Further criteria was given as "significant leg weakness but with good breathing (a forced vital capacity of greater than 60%)." They're expecting it to take 2 years+ for completion of this first phase.

As a side note, my husband is thinking about the ceftriaxone trial and he was told by both parties that would not affect his ability to participate in the stem-cell trial at a later date.

Hope this info is helpful.