Cns10-nps

Status
Not open for further replies.

SupportivePartner

Active member
Joined
Feb 9, 2017
Messages
32
Reason
CALS
Diagnosis
03/2017
Country
US
State
CA
Hi all,

Has anyone participated in Cedars-Sinai's CNS10-NPC stem cell study? My husband is strongly considering participating in this study and his Neurologist has been pushing him to do it, but we are obviously concerned about possible outcomes. It sounds like most participants have made it out of the surgery and are functioning as they did prior to the surgery, but I'm wondering if anyone has noticed any improvements in functioning, or conversely, has anyone experienced any negative side effects?

Thank you.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
517
Reason
PALS
Diagnosis
05/2014
Country
CA
State
Ontario
I think if you search stem cell, hear you will find it is thought to be a complete waste of money. I'am surprised a Neurologist, would even discuss it unless it was in the negative.
Al
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,240
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Al this is a legitimate clinical trial not the stem cell for money scams we mostly discuss Different animal

OP I have heard of the trial but don't know anyone in it

Good luck whatever you decide
 

SupportivePartner

Active member
Joined
Feb 9, 2017
Messages
32
Reason
CALS
Diagnosis
03/2017
Country
US
State
CA
Thank you for the clarification Nikki. We are still thinking about our decision, but are leaning toward doing the operation. Will keep you all posted.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,240
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Please let us know how it goes if you do it and are allowed to share anything. It looks like an interesting trial and I believe it is no placebo?
 

SupportivePartner

Active member
Joined
Feb 9, 2017
Messages
32
Reason
CALS
Diagnosis
03/2017
Country
US
State
CA
You are correct- there is no placebo. They treat one leg (the specific side unbeknownst to us). I'm not sure if we'll be able to share anything, but I'll find out if we can. We'll most likely have our decision made by the end of this weekend.
 

diagnosed2016

Distinguished member
Joined
Apr 30, 2016
Messages
182
Reason
CALS
Diagnosis
04/2016
Country
US
State
California
My husband decided not to participate in the study, although he was considering it. I hope you have good results if you go ahead. The procedure/hospital time etc was a bit much for us, and with only one limb treated so he didn't think it was for him.
 

SupportivePartner

Active member
Joined
Feb 9, 2017
Messages
32
Reason
CALS
Diagnosis
03/2017
Country
US
State
CA
Update: We decided not to participate in the study this month, but will likely participate early next year. We will keep you all posted.
 

AKNate

Distinguished member
Joined
Oct 25, 2016
Messages
179
Reason
Loved one DX
Diagnosis
10/2016
Country
AUS
State
NSW
Can you both let us know why you didn't want to participate now? Is it a personal reason or because of the actual trial and it's structure?
 

SupportivePartner

Active member
Joined
Feb 9, 2017
Messages
32
Reason
CALS
Diagnosis
03/2017
Country
US
State
CA
Hi AKNate,

There was a combination of factors that led to our decision. We want to have children, and it is not recommended that you try to have kids after participating in this study, so this gives us more time to try and also bank some sperm. We also have a lot going on in our lives right now (we are in the process of buying a home and we have other family stressors).

You also have to spend 5 days in the hospital following the initial surgery, and my husband felt anxious about that. Additionally, the study only targets one leg, so it's of course not a cure, and you have to go into it with the mindset that you're donating your body to the further advancement of research. I think my husband wasn't mentally prepared to commit to the study in 2 weeks. We wanted to take more time to make a decision that could potentially be life changing. We will most likely participate in the study in January, when it will be in Phase 2, and I'll let you know more about it at that point.

I know we connected a while ago regarding Radicava, and I still have your email address. I'd love to connect with you again. By the way, I have a cousin in Sydney who I believe you know- Yelena. Small world.
 

AKNate

Distinguished member
Joined
Oct 25, 2016
Messages
179
Reason
Loved one DX
Diagnosis
10/2016
Country
AUS
State
NSW
YES!!!!!!! I was wondering who that was from the forum!!! My friend SMS'd me when Yelena made the connection between us. Please email me, I would love to chat again :) Yel is a very close friend to one of my friends (who i think you met also).

I totally get not participating for those reasons - we wanted to go to Boston for the gene silencing and for very similar reasons we couldn't.
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

We appreciate your understanding and cooperation!

I've Disabled AdBlock
No Thanks