Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 07-30-2007, 12:02 AM #11
pegleg's Avatar
pegleg pegleg is offline
Senior Member
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
pegleg pegleg is offline
Senior Member
pegleg's Avatar
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
Default Bob

where did you get t his information? and I thought I was well informed!

thanks so much

peg
pegleg is offline   Reply With QuoteReply With Quote

advertisement
Old 07-30-2007, 01:05 AM #12
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
Default Extremely informative post Bob ...

thankyou. The quote:

"Based on the findings of an Independent Data Monitoring Committee (IDMC) comprised of internationally recognized Parkinson's Disease experts, the severity and frequency of these serious side effects are in line with the complications that could normally be expected after this type of intervention".

gets me two ways, firstly that appears good news but also reflects the severity and risk of brain surgery.

Thanks again,
Neil.

p.s. do you know next weekends lottery numbers as well
aftermathman is offline   Reply With QuoteReply With Quote
Old 07-30-2007, 06:44 AM #13
BobT BobT is offline
Junior Member
 
Join Date: Mar 2007
Location: Cape cod MA
Posts: 30
15 yr Member
BobT BobT is offline
Junior Member
 
Join Date: Mar 2007
Location: Cape cod MA
Posts: 30
15 yr Member
Default

This is only 2 out of 17 pages of my consent form. Other sections It goes into everything about PD, Spheramne, screening, pre and post surgical, LT followup. It also mentions a pilot group of 6. Hmm I wonder what ever happened to them. (Just kidding) It says .........

Six subjects have been treated with Spheramine in a previous clinical research study where each received 325,000 cells injected into the most affected side of the brain. All subjects have been followed for over 4 years. One subject experienced a serious sife effect of depression and suicidal thoughts.Subjects in the study experienced involuntary movement, headache, joint pain, upper respiratory infection, dizziness, depression, limb pain, decreased sensation, migrane, abnormal sensation,aggravated PD symptoms (longer OFF times) halucinations, insomnia, menopause,postural hypotension,
increased appetite, muscle twitching, freezing, and slow movement. At this point it is not clear if any or all of these side effects were due to Spheremine. One subject had some bleeding in the brain which did not result in symptoms.
.................................................. .......................
The downside for me is most of those side effects i already had With no proof of ever having menopause though it appears I got shammed and I'll get to do it all over again. Women are so lucky
BobT is offline   Reply With QuoteReply With Quote
Old 07-30-2007, 06:52 AM #14
BobT BobT is offline
Junior Member
 
Join Date: Mar 2007
Location: Cape cod MA
Posts: 30
15 yr Member
BobT BobT is offline
Junior Member
 
Join Date: Mar 2007
Location: Cape cod MA
Posts: 30
15 yr Member
Default

Neil
i forgot you. On the lottery yes 3-4-7-17-23-26 daily 4176. you weren't specific about the state, so one of these should work anywhere
BobT is offline   Reply With QuoteReply With Quote
Old 07-30-2007, 08:53 AM #15
chasmo's Avatar
chasmo chasmo is offline
Member
 
Join Date: Aug 2006
Location: Los Angeles, CA
Posts: 714
15 yr Member
chasmo chasmo is offline
Member
chasmo's Avatar
 
Join Date: Aug 2006
Location: Los Angeles, CA
Posts: 714
15 yr Member
Default

Quote:
Originally Posted by BobT View Post
Neil
i forgot you. On the lottery yes 3-4-7-17-23-26 daily 4176. you weren't specific about the state, so one of these should work anywhere
Neil;

I'd say that BobT, "Gotcha!!"....LOL


Charlie
chasmo is offline   Reply With QuoteReply With Quote
Old 07-30-2007, 08:04 PM #16
pegleg's Avatar
pegleg pegleg is offline
Senior Member
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
pegleg pegleg is offline
Senior Member
pegleg's Avatar
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
Default Thanks, Bob!

So that's where you got that info. So you actually read your informed consetn? lol

You have to tell them every time you have gas or any little detail when you are in a clinical trial.

Peggy
pegleg is offline   Reply With QuoteReply With Quote
Old 07-30-2007, 08:29 PM #17
BobT BobT is offline
Junior Member
 
Join Date: Mar 2007
Location: Cape cod MA
Posts: 30
15 yr Member
BobT BobT is offline
Junior Member
 
Join Date: Mar 2007
Location: Cape cod MA
Posts: 30
15 yr Member
Default No guarrantees

Not only did I read it, but I still had questions. There was no info on the original 6 beyond year 2 post surgery.
The guidelines are so strict that even though I participated in Phase II. My health over this year determines my eligibilty for Phase III. Any funny blood , urine or MRI can boot me. Imagine this. I received a call one day about previous surgery, potentially eliminating me from the trial. "Bob in reviewing your file one last time before going to Atlanta I see you had eye surgery. Yes I was 3. What was it for. Correcting a lazy eye. Why is that relevent. We just need to make sure all info is correct and need Atlantas OK. Do you remember what eye. I WAS 3. I' m sorry. Yes the left one.
BobT is offline   Reply With QuoteReply With Quote
Old 07-30-2007, 08:33 PM #18
pegleg's Avatar
pegleg pegleg is offline
Senior Member
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
pegleg pegleg is offline
Senior Member
pegleg's Avatar
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
Default

Well Bob, have I got something for you!

Here are the slides for the actual presentation done at a conference done 48-months after the Spheramine surgery (the original six - one side only done)

http://www.titanpharm.com/pdf/Sphera...thsResults.pdf

Peg
pegleg is offline   Reply With QuoteReply With Quote
Old 07-30-2007, 11:25 PM #19
BobT BobT is offline
Junior Member
 
Join Date: Mar 2007
Location: Cape cod MA
Posts: 30
15 yr Member
BobT BobT is offline
Junior Member
 
Join Date: Mar 2007
Location: Cape cod MA
Posts: 30
15 yr Member
Default

Thank you I needed that
BobT is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
whats with the spoons unrouley1 Reflex Sympathetic Dystrophy (RSD and CRPS) 2 06-24-2007 09:26 PM
Whats going on? Brokendreamsz Epilepsy 5 02-24-2007 02:29 PM
Whats wrong with me? PLEASE help.. jonathan18 General Health Conditions & Rare Disorders 10 01-21-2007 12:55 PM
BIPAP..........whats it like? boomer ALS 2 10-28-2006 07:09 PM
whats going on with Kynzer??? Mom2heathandkynzer Children's Health 4 09-20-2006 01:28 PM


All times are GMT -5. The time now is 06:23 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.