ALSFORUMS.COM   - ALS/MND Support Group   - Fibromyalgia Support Group   - PLS Support Group   - PBP Support Group   - PMA Support Group   -  
Old 06-01-2013, 06:26 PM   #1 (permalink)
Member
Registered Member
Join Date: 2013
City: Birmingham
State: Iowa
Country: US
Diagnosed: 01/2013
Posts: 217
dbltree is on a distinguished road
Default Engineered stem cell advance...

Engineered stem cell advance points toward treatment for ALS (May 28, 2013)

dbltree is offline  
Old 06-01-2013, 07:39 PM   #2 (permalink)
Senior Member
Registered Member
 
Nighthawk's Avatar
Join Date: 2013
City: Anne Arundel Co
State: Maryland
Country: USA
Diagnosed: 12/2011
Posts: 833
Nighthawk is on a distinguished road
Default Re: Engineered stem cell advance...

I am hoping many of this generation of PALS could still be alive by the time these Stem Cells treatments are widely available for use in patients.
Fingers crossed.

NH
Nighthawk is offline  
Old 06-02-2013, 02:26 AM   #3 (permalink)
Member
Registered Member
 
Txgirl's Avatar
Join Date: 2013
City: 000
State: Texas
Country: US
Diagnosed: 04/2013
Posts: 254
Txgirl is on a distinguished road
Default Re: Engineered stem cell advance...

Quote:
Originally Posted by Nighthawk View Post
I am hoping many of this generation of PALS could still be alive by the time these Stem Cells treatments are widely available for use in patients.
Fingers crossed.

NH
I agree and I would participate in the trial. My ALS doctor mentioned a trial that starts this fall. It is injection and no placebo. I will see him again on June 7th at the ALS clinic and will get the info for the trial he mentioned to me last month.
Txgirl is offline  
Old 06-02-2013, 01:50 PM   #4 (permalink)
Senior Member
Registered Member
 
Nighthawk's Avatar
Join Date: 2013
City: Anne Arundel Co
State: Maryland
Country: USA
Diagnosed: 12/2011
Posts: 833
Nighthawk is on a distinguished road
Default Re: Engineered stem cell advance...

Quote:
Originally Posted by Txgirl View Post
I agree and I would participate in the trial. My ALS doctor mentioned a trial that starts this fall. It is injection and no placebo. I will see him again on June 7th at the ALS clinic and will get the info for the trial he mentioned to me last month.
Good to hear that you are interested on participating in such trials.
Stem Cells treatments hold the key in a future cure for ALS and other MND.
Is this trial going to be offered at your ALS Clinic? If so, try to get enrolled as soon as you can.

Good luck to you.


NH
Nighthawk is offline  
Old 06-02-2013, 02:19 PM   #5 (permalink)
Member
Registered Member
 
Txgirl's Avatar
Join Date: 2013
City: 000
State: Texas
Country: US
Diagnosed: 04/2013
Posts: 254
Txgirl is on a distinguished road
Default Re: Engineered stem cell advance...

@Nighthawk My understanding is this treatment will be held @ my clinic in Dallas. I will post the details of this trial (which one he was referring to) when I return home on the 7th. I would have asked him for more details when he told me about it, but he had just confirmed my ALS diagnoses and my mind was going everywhere at that time. My doctor is an ALS specialist and very active & involved in the drug trials.
Txgirl is offline  
Old 06-07-2013, 09:02 PM   #6 (permalink)
Member
Registered Member
 
Txgirl's Avatar
Join Date: 2013
City: 000
State: Texas
Country: US
Diagnosed: 04/2013
Posts: 254
Txgirl is on a distinguished road
Default Re: Engineered stem cell advance...

I went to the ALS clinic today. The name of the clinical trial will be Questcor. It is not on the trials list yet. It should be on the list early this fall. It will be an injection under the skin. My doctor said he is excited about this drug and trial. He also informed me that I may not be able to participate in the trial because my breathing is at 50 and needs to be at 70 or above.
He said that I needed to be on bipap. I am so disappointed that my breathing so bad but very hopeful about this trial.
Txgirl is offline  
Old 06-08-2013, 12:03 AM   #7 (permalink)
Senior Member
Registered Member
Join Date: 2011
City: nixa
State: mo
Country: US
Diagnosed: 02/2010
Posts: 555
pearshoot is on a distinguished road
Default Re: Engineered stem cell advance...

txgirl if not doing it now start exercise called stacking air two or three times daily. need instructions pm me
pearshoot is offline  
Old 06-08-2013, 01:23 AM   #8 (permalink)
Senior Member
Registered Member
 
Nighthawk's Avatar
Join Date: 2013
City: Anne Arundel Co
State: Maryland
Country: USA
Diagnosed: 12/2011
Posts: 833
Nighthawk is on a distinguished road
Default Re: Engineered stem cell advance...

Quote:
Originally Posted by Txgirl View Post
I went to the ALS clinic today. The name of the clinical trial will be Questcor. It is not on the trials list yet. It should be on the list early this fall. It will be an injection under the skin. My doctor said he is excited about this drug and trial. He also informed me that I may not be able to participate in the trial because my breathing is at 50 and needs to be at 70 or above.
He said that I needed to be on bipap. I am so disappointed that my breathing so bad but very hopeful about this trial.
Hi,

How come they turned you away if as you said in your post the Stem Cells procedure was going to be performed as injections under the skin (I'm assuming IM or IP injections) which wouldn't require anesthesia? I'm curious.
Unless the injections were going to take place in the spine, which would imply anesthesia and thus, they can turn PALS with FVC < 50% away to avoid breathing complications due to the anesthesic.

NH
Nighthawk is offline  
Old 06-08-2013, 01:13 PM   #9 (permalink)
Member
Registered Member
 
Txgirl's Avatar
Join Date: 2013
City: 000
State: Texas
Country: US
Diagnosed: 04/2013
Posts: 254
Txgirl is on a distinguished road
Default Re: Engineered stem cell advance...

Quote:
Originally Posted by pearshoot View Post
txgirl if not doing it now start exercise called stacking air two or three times daily. need instructions pm me
I have not heard of this exercise. I looked it up on Google and will start doing it. Thank you for telling me about it. I haven't set up a PM yet or would have sent you a PM. Thanks again.
Txgirl is offline  
Old 06-08-2013, 01:22 PM   #10 (permalink)
Member
Registered Member
 
Txgirl's Avatar
Join Date: 2013
City: 000
State: Texas
Country: US
Diagnosed: 04/2013
Posts: 254
Txgirl is on a distinguished road
Default Re: Engineered stem cell advance...

Quote:
Originally Posted by Nighthawk View Post
Hi,

How come they turned you away if as you said in your post the Stem Cells procedure was going to be performed as injections under the skin (I'm assuming IM or IP injections) which wouldn't require anesthesia? I'm curious.
Unless the injections were going to take place in the spine, which would imply anesthesia and thus, they can turn PALS with FVC < 50% away to avoid breathing complications due to the anesthesic.

NH
This trial is not stem cell. I asked my doctor if the injections were in the muscle or in the spine. He said "under the skin". They have determined that ALS has to do with immune system and that is the purpose of this drug trial.
I'm sorry but I really do not understand the rest of your post. I do not know what IM or IP injections are, as I am new to all of this.
Txgirl is offline  
Old 06-08-2013, 02:45 PM   #11 (permalink)
Senior Member
Registered Member
 
Nighthawk's Avatar
Join Date: 2013
City: Anne Arundel Co
State: Maryland
Country: USA
Diagnosed: 12/2011
Posts: 833
Nighthawk is on a distinguished road
Default Re: Engineered stem cell advance...

Quote:
Originally Posted by Txgirl View Post
This trial is not stem cell. I asked my doctor if the injections were in the muscle or in the spine. He said "under the skin". They have determined that ALS has to do with immune system and that is the purpose of this drug trial.
I'm sorry but I really do not understand the rest of your post. I do not know what IM or IP injections are, as I am new to all of this.
Hi,

Sorry for not explaining myself better.
IM stands for Intra Muscular (injections).
IP stands for Intra Peritoneal (injections).

Thank you Lord because they (Researchers) are proving me right. I have always suspected that ALS has to be an AUTO-IMMUNE disorder.
Why I think this? Because, how can it be possible that ONLY the Motor Neurons are SELECTIVELY targeted for destruction?
What targets them? Why?
It looks to me that some Lymphocytes see the Motor Neurons as an enemy and selectively kill them.
If this process can somehow be stopped or reversed, then the rest of the Motor Neurons can be preserved.

No wonder why they (Researchers) have not found an effective cure for this disease, because they are using the WRONG approach to fight it.


NH
Nighthawk is offline  
Old 06-08-2013, 04:20 PM   #12 (permalink)
Member
Registered Member
 
Txgirl's Avatar
Join Date: 2013
City: 000
State: Texas
Country: US
Diagnosed: 04/2013
Posts: 254
Txgirl is on a distinguished road
Default Re: Engineered stem cell advance...

Quote:
Originally Posted by Nighthawk View Post
Hi,

Sorry for not explaining myself better.
IM stands for Intra Muscular (injections).
IP stands for Intra Peritoneal (injections).

Thank you Lord because they (Researchers) are proving me right. I have always suspected that ALS has to be an AUTO-IMMUNE disorder.
Why I think this? Because, how can it be possible that ONLY the Motor Neurons are SELECTIVELY targeted for destruction?
What targets them? Why?
It looks to me that some Lymphocytes see the Motor Neurons as an enemy and selectively kill them.
If this process can somehow be stopped or reversed, then the rest of the Motor Neurons can be preserved.

No wonder why they (Researchers) have not found an effective cure for this disease, because they are using the WRONG approach to fight it.


NH
Thank you for explaining about the injections.
He explained to my husband and I that "they" have determined that the immune system is involved because blood samples from ALS patients show a "jacked up" immune system.
He asked us if we would like to give blood samples for this controlled study. Mine as an ALS patient & my husband as a normal (non ALS person). Of course we said yes.

I told him my theory of ALS being contagious, but not to all people. Only people that were somehow susceptible to the disease. He looked at me & said "I believe you are right and we are almost there". I said so it is contagious? He said "it is a very good possibility but we are not quite there yet."

This drug trial that is suppose to some out this fall is very important and I am heart broken that I can't participate. I will do whatever I can to get my breathing up and avoid the bipap, so I can participate.
Txgirl is offline  
Old 06-08-2013, 04:35 PM   #13 (permalink)
Senior Member
Registered Member
 
Nighthawk's Avatar
Join Date: 2013
City: Anne Arundel Co
State: Maryland
Country: USA
Diagnosed: 12/2011
Posts: 833
Nighthawk is on a distinguished road
Default Re: Engineered stem cell advance...

Quote:
Originally Posted by Txgirl View Post
Thank you for explaining about the injections.
He explained to my husband and I that "they" have determined that the immune system is involved because blood samples from ALS patients show a "jacked up" immune system.
He asked us if we would like to give blood samples for this controlled study. Mine as an ALS patient & my husband as a normal (non ALS person). Of course we said yes.

I told him my theory of ALS being contagious, but not to all people. Only people that were somehow susceptible to the disease. He looked at me & said "I believe you are right and we are almost there". I said so it is contagious? He said "it is a very good possibility but we are not quite there yet."

This drug trial that is suppose to some out this fall is very important and I am heart broken that I can't participate. I will do whatever I can to get my breathing up and avoid the bipap, so I can participate.

Please, do the STACKING AIR exercises as suggested by "Pearshoot". They will help you increase your pulmonary capacity by increasing your FVC (should be over 50% if you want to participate on this drug trial). You will need to do these exercises at least 2-3 times a day.
They can be done with help or...without help.
Just try it.
If you don't know how to do it, use the Search function of these Forums and look for old threads referring to this subject.
It would be good for you not to be turned down from this drug trial just because of your breathing.

Good luck to you.


NH
Nighthawk is offline  
Old 06-08-2013, 08:08 PM   #14 (permalink)
Member
Registered Member
 
Wings's Avatar
Join Date: 2012
City: NZ
State: NZ
Country: NZ
Diagnosed: 07/2011
Posts: 149
Wings is on a distinguished road
Default Re: Engineered stem cell advance...

perashoot ty for this suggestion i looked it up and found a really good pdf doc on it with instructions i will postthe link here but may go to mods
Wings is offline  
Old 06-08-2013, 08:10 PM   #15 (permalink)
Member
Registered Member
 
Wings's Avatar
Join Date: 2012
City: NZ
State: NZ
Country: NZ
Diagnosed: 07/2011
Posts: 149
Wings is on a distinguished road
Default Re: Engineered stem cell advance...

this link goes to a pdf doc on explaining an exercise pearshoot was talking about above re BS Braeth stacking

http://www.providencecare.ca/objects...0handbook.pdf/

Wings is offline  
Closed Thread

Tags
als, cell, stem cell, treatment


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search


Similar Threads for: Engineered stem cell advance...
Thread Thread Starter Forum Replies Last Post
Cell Medicine/Medistem ALS stem cell treatment reporterrob ALS Research News 2 11-23-2010 06:12 AM
stem cell gordon ALS Research News 3 01-05-2009 08:57 AM
stem cell and ... Shane the Pain General Discussion About ALS/MND 2 09-12-2008 03:25 PM
stem cell barbie General Discussion About ALS/MND 5 05-31-2008 11:30 AM
stem cell treatment Jane General Discussion About ALS/MND 10 02-16-2004 07:53 PM


    
   
   
   
   
  ALSforums - Get help and support with ALS/MND